Public Health 2.0: Re-mixing Public Health

Public Health 2.0: Social Innovation and the Rise of Open Health Jody Ranck, DrPH Principal Investigator, Public Health Institute August 2009 "We need to convert the social safety net into a social safety network through the creation of smarter communities that are information-rich, interconnected, and able to provide opportunities for all citizens." -Rosabeth Moss Kanter & Stanley Litow “Innovation is something everyone wants more of, but nobody is too sure what it means exactly”-John Gapper Some Social Media Factoids to Digest:1 -25% of Americans have watched a video in the last month, on their phones -there are over 100 million videos on YouTube and YouTube is the 2nd largest search engine on the web -Facebook added 100 million new users in 9 months, if it were a country it would be the 4th largest in the world -the Dept. of Education found that online students out-performed face-to-face teacher-student learners -Wikipedia is more accurate than Encyclopedia Britannica -1 of 8 couples who met in the US last year met online -there are 1.5 million pieces of content on Facebook -80% of the “tweets” on Twitter are from mobile devices The list could go on. Something has shifted in how we communicate. Public health professionals can no longer dismiss social media as the playground of teens. Those who do may soon find themselves largely irrelevant to the public(s) that constitutes public health. Networks and communication tools are central to how societies organize themselves. We’ve seen text messaging both overthrow despotic rulers as well as incite ethnic violence. Mobiles are changing the way resource poor communities access services, obtain market information and improve their livelihoods. The challenge is this—publics around the globe are See “Social Media Revolution”: http://www.youtube.com/watch?v=sIFYPQjYhv8 1

ahead of public health in their ability to use these tools to innovate. We’re playing catch up again. Innovation in the field of public health too often has meant innovation in the life sciences and medical device world. We need to rapidly develop our thinking around social innovation and innovation systems that can move beyond the traditional confines of biomedical and healthcare innovation. The nature of the web in this point in time is evolving rapidly toward the “network as platform” model where the more people use the platforms and applications the better they become.2 This means that people contributing content, data, and insights act as a form of sensor for what is going on around us. Furthermore, there are more physical sensors and mobile devices that enable us to “see” what was previously invisible and make connections to health outcomes. Your average smartphone now contains numerous sensors such as microphones, cameras, motion sensors, GPS, etc. As Tim O’Reilly observes, even Apple’s iPhoto ’09 has pretty good facial recognition features. During the summer of 2009 we have witnessed a dramatic increase in augmented reality applications that take additional layers of data and add them to the physical space in front of our eyes via mobile devices. The call for better open data polices and frameworks is accelerating in government circles with efforts to track stimulus spending and the creation of new jobs. This paper will provide some initial thoughts as well as attempt to map an emerging landscape of tools, technologies, and innovation insights as an initial step towards developing frameworks for social innovation in public health. The underlying rationale for this paper is first to provide a preliminary overview of some of the technological changes that are happening and make the connections to public health and why we need to become more engaged with technology debates. Furthermore, how can we drive the politics of technology deployment to make sure that the right technologies get into the right hands, the data measure the right things to drive better health outcomes, and generally to think more strategically about social media, mobiles, sensors, visualization tools within the context of intentional innovation policies for public health. Introduction: This paper will explore the emerging landscape of innovation in public health through the lens of social media, mobiles and design and the possibilities that may evolve from the tools and ethos of social media (or web 2.0 as these tools are often referred). The emphasis is going to be on social innovation, or innovations that have the effect of changing social practices. My objective is to shift the emphasis in how we talk about innovation from a focus merely on ‘things’ or new technologies and to think about the complex networks of people, technologies, and nature (eg. microbes) that come together Tim O’Reilly (2009). Web Squared: Web 2.0 Five Years On. Web2Summit.com 2

to form an “assemblage” of elements that produce new social outcomes, namely preventing disease, ameliorating the negative consequences of global climate change and addressing the social inequalities and determinants of health. As Ilona Kickbusch (2008) has recently noted, innovation in health and healthcare all too frequently refers to the innovations in biotechnology and pharmaceuticals that deliver medical value rather than social value. Furthermore, she notes, we are undergoing a major shift in respect to health and its role in society. Health is no longer, if it ever was, a function of the delivery of medical care despite the almost obsessive concern with medical care in “health reform” debates. The boundaries of what constitutes health are broad and fluid and increasingly we must think well beyond the health sector to account for the social determinants of health and the range of factors that influence health outcomes. Yet rarely do we do this in practice or in a manner that is sustainable and actually brings sectors from outside of health in a robust manner. The innovations that are occurring on mobile platforms in low-resource contexts are making those who espouse luddite perspectives on technology in public health increasingly irrelevant. However, we must also be cautious to think critically about the considerable amount of hubris that Silicon Valley-influenced technolibertarianism often mobilizes in the political economy of hype and hope to create new markets. The underlying rationale for the way of thinking about innovation proposed here will attempt to provide a way of thinking about health and tools to more readily enable us to see and make the connections that can encompass this rather complex and challenging thing called health. The purpose of social innovation in this context is about developing the next generation of public health tools, practices and politics that can respond to the ever-growing demands that the public(s) demands of public health professionals, calls for the democratization of knowledge, expertise and more participatory practices of public health. There is a need to create more innovative approaches to health that enable new voices and knowledges to be at the table, and to catalyze development of approaches that can address the complexity and global nature of public health challenges. We must now recognize that ‘global health’ doesn’t mean public health elsewhere. While much of the paper will provide examples of technology or social networking platforms being used today, I want the reader to think beyond the technology. Think of the examples in socio-technological terms. Too often, in my experience, when we mention new technologies, particularly social media, in a public health setting the first questions are focused on technologies used by teens and therefore considered irrelevant to public health or the view that technologies are artifacts that the poor lack. An additional concern

that health professionals have at the mere thought of democratizing knowledge and expertise is the perceived threat of inaccurate health information. While this is certainly a problem I have strong reservations as to whether it is nearly the problem that health and medical professionals make it out to be. Yes, we can certainly find quackery and an abundance of conspiracy theories on the internet. But this does not discount the enormous positive contribution that publics make to the development of knowledge and expertise in health. Deshpande and Jadad (2009) argue that it is time for the health professions to move on from the skepticism they exhibit towards online health information and engage with the incredible number of expert patient/citizen science communities that are growing daily and co-creating important health knowledge. A growing number of citizen science projects worldwide can attest to this (Corburn 2005). I will argue here that social media, mobiles, design, open innovation, cloud computing and new forms of technological citizenship (Barry 2001) will enable a very different form of public health in the future if we engage with the public in a more open manner. Across the governmental sector we’re finding that the magnitude of problems (particularly post-September/October 2008) is growing, the diversity of stakeholders is broadening and geographical scope and scale of issues is becoming more challenging (eg. climate change). With the increased focus on governance and transparency coming from the public and NGOs and fueled by the web 2.0 revolution, we will need to adopt a different approach to knowledge creation, innovation and the politics of health. The private sector has recognized that innovation is often best achieved when the boundaries of the firm become more porous through the adoption of open innovation methods (see Nambisan and Sawhney 2007). Non-profits have grown in number and so has the fragmentation of the non-profit sector (Moss Kanter and Litow 2009). This has resulted in a growing call for mergers and strategic partnerships. But will this solve the challenges we face? Not unless we manage to drive social innovations that radically change organizational forms and platforms to take advantage of our growing knowledge of networks. This is why we will be looking at the role of social media in public health. It is my opinion that we are still fighting network problems with analog institutions despite having many networking tools at our disposal. Yes, many public health professionals use social media tools in their professional and private lives, but have we thought through how we can innovate in terms of organizational forms, innovation platforms and our understandings of networks and health in a robust enough of manner to confront the tasks at hand? It is commonly heard that public health, as a field, averages roughly 8-10

years behind the innovation curve of other sectors. I have frequently heard young innovators mention that public health is where innovation goes to die. This doesn’t have to be the case. Things are beginning to change if we look at the early stages of the mobile health revolution taking place in Africa, for example. But how can we create the institutions and innovation networks where we will be in a position to drive innovations in social media and networking? Going forward, this will be one of the imperatives of public health. If we are going to stake a claim in the arena to work with not only the public at large, but the most marginalized we will have to become masters of creating the innovation systems that integrate the voices of end-users into the early R&D of new technologies and policies. New innovation systems for global health are growing in importance and we are just now beginning this discussion within the domestic US public health space. Hopefully this paper will contribute to the debate. Social Media: What do we mean by web 2.0? For many in the public health field the terms “web 2.0” and “social media” were rather alien species until 2008-09 when Twitter became a mainstream news item due to celebrity adoption of the tool. After the Mumbai terrorist attacks the growth of Twitter took off due to the attention it received on CNN for its role in late breaking news from people on the scene. However, web 2.0 and social media have been around since the early 2000s, if not earlier. What we’re really talking about here is an eco-system of communications tools that evolved online from the first generation of the internet that we all experienced from the late-1980s through the 1990s. This was an internet of mostly one-way communications tools where information was pushed out to an audience in the traditional publishing mode. Tim O’Reilly coined the term “web 2.0” around 2005 when, in the wake of the dotcom bust, new “platforms” arose that enabled users of the sites to share and create content, and find like-minded people. Most of these platforms also offered free services and were very inexpensive companies to create. In fact, many of the web 2.0 business models posed challenges for venture capitalists who were often not as necessary to the launching of companies as they had been in the 1990s dotcom boom. Figure 1 below was the overview in 2005 of the platforms and tools that made up the web 2.0 eco-system at the time. Figure 1: O’Reilly Web 2.0 Meme Map

O’Reilly described the emerging web 2.0 as constituting an “architecture of participation”. For the reader interested in learning more about the history of the emergence of web 2.0 one can consult the original O’Reilly piece (2005). For now, one should recognize that what we’re talking about is a more “social” web that enables one to tap into the collective intelligence of online communities, share content, create mashups or remix content (eg. Google Maps mashups). Social media are about the sociality that the web platforms enable. Below is a list of common tools that are included in this social media eco-system: Social Bookmarks: Rather than bookmarking a website on your own computer you can “tag” a site and share those tags with a social network. Some examples: Delicious.com, Ma.gnolia, Diigo, StumbleUpon Crowdsourced Content: Rather than obtaining content through a traditional newspaper, print journalism mode one can “grab” content from a variety of sources, comment, rate and share. Some examples: Digg, Yahoo Buzz, Mixx, Reddit, Newsvine

Blogs: self-publishing of content using a wide number of platforms from Wordpress to Blogger and then some. In contrast to traditional media sites the ethos of blogging is about sharing content and creating a conversation. You can search blogs through sites such as Technorati, Google Blog Search, etc. RSS or Really Simple Syndication: This is a format used to update readers on new content published on blogs, news sites, etc. in a standardized format that can be seen as “feeds” that are aggregated in an RSS Reader/Aggregator such as Google Reader. This enables one to follow a large number of feeds in one site rather than having to track down every website that one monitors on a regular basis. Micro-Blogging/Micro-Media: Twitter is the most well known but these enable the user to publish short entries of information. Other examples include FriendFeed, Tumblr. Twitter has its own eco-system of tools that can run on the API and enable the user to do surveys, fundraise, post documents, music, video, etc. Social Networks: These are platforms that enable like-minded individuals to congregate and create profiles, share content, update information, etc. These include Facebook, LinkedIn, MySpace, Beebo, Ning, etc. Video and Photo Sharing: Social media tools also include video platforms such as YouTube and Vimeo, photo-sharing sites such as Flickr, document sharing such as Scribd, presentation sharing such as SlideShare. Twitter: Twitter has become one of the most popular social media sites over the past year and is a service that enables users to generate messages of up to 140 characters. The simplicity in design and use betrays the power of the medium for building communities of likeminded individuals who share links to content, generate discussions, fundraising campaigns and collectively aggregate content through the use of hashtags (using “#” in front of a keyword allows users to readily search for the “tweet” (posting)). While there is a certain amount of hype about the effects of twitter in various discourses there is no denying that the social impact of the tool has been considerable when we examine everything from the Mumbai terrorism attacks to the Iran election protests to everyday development of online conversations around social entrepreneurship, global health, healthcare reform and technology development. I will attach an appendix of some of the most important health professionals on Twitter. Brian Solis has created the following social media map in Figure 2. The reader should note that the map is somewhat dated and there are additional entries under most headings and some of the companies on

this map have ceased to exist.

Figure 2: Social Media Map (Brian Solis)

In my appendix I provide links to some social media primers for those uninitiated into the world of social media. The Mobile Web. An important thing to keep in mind is that the web is becoming increasingly mobile. With the release of the iPhone 3G in July 2008 we witnessed a step-change in innovation and the number of people accessing the web from a smart phone. In August 2009 the European Information Technology Observatory (EITO) estimated that the number of people worldwide using mobile phones rose from 3.9 billion in 2008 to 4.4 billion in 2009, an increase of 12% resulting in nearly 2/3 of the global population now possessing a phone.3 Not all of these phones are smartphones capable of accessing the worldwide web, however one must conclude that overall access to mobiles worldwide greatly exceeds the 2/3 of the population due to the fact that the mobile is not always constructed as a “personal” device and is 3

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frequently shared across households or communities in lower income settings. The CDC noted in late 2008 that nearly 20% of all US households no longer had landlines, a trend that was increasing due to the recession. Some recent Pew Internet data is useful as well. When one looks at traditional internet access points via broadband approximately 46% of African-Americans have broadband at home (Figure 3). Figure 3: Pew Study on Broadband and Mobile Access

However, once one looks beyond broadband to mobile devices the picture begins to change. Access for African-Americans begins to change dramatically (See Figure 4). African-Americans are 70% more likely to access the web via a mobile device than White Americans. Yet, we still find many skeptics in the public health community questioning the relevance of social media and mobile technologies for lower-income communities and minority populations. If one looks at the applications available in the iPhone AppStore, out of the 65,000 or so applications most, arguably, are not applications designed to produce public health outcomes. One of our innovation challenges going forward will be to find ways to engage citizens on mobile

platforms in ways that speak to their lived realities and own constructions of technology use. A great deal of the content that will be presented in this report will be artifacts, ideas, trends and concepts that we can work with in our “innovation sandbox” to achieve these goals. While the mobile is not the only platform or technology available, it is growing in importance worldwide. The next generation of public health practitioners will need to find ways to develop innovation systems and platforms to get out in front of the curve rather than following, and many years behind as is often the case. Figure 4: Wireless Access in the US

Despite the challenges of small screens, limited bandwidth of mobile carriers, interoperability issues, security and privacy challenges, the mobile web is rapidly approaching (perhaps it is already here, we just haven’t noticed). So as we go forward thinking about social media and health it will be very important to keep these insights about mobile usage in our heads and remember that the web is increasingly mobile, so much so that within the next several years it will just be referred to as the web, not the mobile web.

Social Media and How We Can Think about Public Health 2.0 Strategies Now that we’ve been introduced to a range of tools and insights on where the web is going and a cursory view of some of the effects of the web on organizational life it would be useful to think about some of the functions of web 2.0 tools in the social sector so that we can create the building blocks for innovation strategies. Gaurav Mishra provides one of the most basic frameworks to describe how social media are currently being used in the non-profit sector. His “The 4Cs of Social Media” looks like this:

Content: Social media tools enable anyone to create content and distribute or publish this content via a range of social media tools such as blogs, wikis, YouTube, etc. Social media tools also enable readers and users of content to tag and share resources, create mashups via data visualization tools or Google Maps. Co-creation is becoming increasingly important in social services and health as we move the compass from more bureaucratic, top-down approaches to more bottom-up, user-generated content scenarios in health. While one may not replace the other we will have to think about how to effectively manage a medically and socio-politically pluralistic universe of ideas and knowledge. There are also content aggregators such as alltop.com. Some examples of platforms for creating/curating content would

include the following: Social Documentary (http://www.socialdocumentary.net) This site aggregates content (photography, documentaries) from individuals on critical issues of the day. The goal is to use photography to motivate action on a particular issue. The site also serves as an image bank for students and professionals concerned with social issues.

Witness (http://www.witness.org/): Witness uses video to fight human rights abuses worldwide. Video content is used in conjunction with litigation, research and organizing for change using conventional human rights tools and methods.

Collaboration: social networks, blogs, Twitter, etc. enable users to find like-minded individuals and aggregate voices in a more nimble way than traditional media sources. Anything from conversations around emerging issues to co-created knowledge to rapid responses to breaking events, legislation, etc. are facilitated by social media platforms. One can begin as a conversation, if curated or fertilized by "community gardeners" , can evolve into co-created knowledge, new partnerships or new products. Moving ideas from conversations to aggregate actions, on legislative issues for example, requires both online and offline integration. Some examples: City of Toronto’s Transit Camp (http://transitcamp.wik.is/): When the Toronto Transit Commission needed to develop a new transportation policy they created the Transit Camp site and activities to engage the citizenry. Rather than generate a policy prescription that is then communicated to the public after the fact, their approach solicited feedback on the community’s own framings of transportation issues first and their ideas for solutions. Policy-makers could then build on the “crowdsourced” proposals and suggestions.

All Hazards Consortium (http://www.ahcusa.org/) : Disaster Preparedness involves many different sectors involved with evacuation planning, infrastructure protection, food security and cybersecurity (Nambisan 2009). This diverse eco-system not only has different players but each may have a different framing of the problem and ideas for how to best address the problem. The All Hazards Consortium created this portal to bring together the different parties to settle on a common framework for addressing the problem and then bringing all of the stakeholders to the same table. Through the forum they learned how different agencies constructed “special needs” and shelter requirements differently. The Consortium was able to sponsor working groups to generate discussion and consensus across agencies The All Hazards Consortium example has become a very successful case study in how to create a collaborative platform. The sponsor of the platform had the responsibility of creating a collaborative environment where all parties could voice their perspectives. In other words, the role of government became less a matter of leading the direction of change and more about developing and maintaining an infrastructure for social knowledge creation.

Community: sustained collaboration is the basis of many professional communities. From building a community around a conference so that collective action and community can evolve post-conference to maintaining effective collaborations among geographically dispersed individuals, social media tools can be effective if the role of community gardener is developed and the community is fertilized with good content and effective (time-saving, ideational, etc.) tools and relationships. An example would be the political blog Daily Kos (http://www.dailykos.com) that creates communities of progressives to exchange ideas and commentary and occasionally organizing political action.

The number of health communities online is proliferating. Referred to as Health 2.0 sites, they are having an impact on the doctor-patient

relationship. In fact, what we’re seeing here is a form of online biological citizenship with examples such as the Genetic Alliance (http://www.geneticalliance.org) and PatientslikeMe.com demonstrate (Rose 2006). When individuals with similar biological (health, medical, environmental) experiences come together and work to refashion that experience, share data, make claims for access to resources and clinical trials, for example, we are seeing this emergent form of biocitizenship in motion. Rose discusses the new relationships that patients frequently have with their bodies and disease within these communities as a form of “somatic ethics” that is being reworked in relationship, or at odds, with traditional bioethics. Within the health blogosphere we increasingly hear about “Information Rx” and “Patients 2.0” as phenomena associated with social media and health communities. Precisely how these communities will change the practice of medicine at the moment is unclear, but they will have an effect. The site PatientsLikeMe.com has become one of the most successful Health 2.0 sites via communities of sufferers of ALS who now share data and outcomes from treatment regimens. Physicians can now see patterns earlier than what would normally have been available in post-marketing surveillance data. One of the challenges in this area is to sort the hype of those hoping for the next big business opportunity in healthcare through Health 2.0 and truly innovative changes in social practices. While there is no denying that the Health 2.0 universe is having some impact on how we think about health and healthcare there is certainly a great deal of hype and growing skepticism about some of the claims of its marketers. This may change when rigorous evaluations of health outcomes, policy outcomes and cyber-ethnographic data help us understand more clearly the impact of these online health communities. In the diabetes realm there is actually a lot of interesting movement. From the diabetes blog, Diabetes Mine (http://www.diabetesmine.com) to Manny Hernandez’s work with the Diabetes Hands Foundation’s social network of diabetics, Tu Diabetes (http://www.tudiabetes.com), these have become important nodes in the diabetes space for driving innovation with new devices as well as peer-to-peer creation of social knowledge of diabetics.

When Amy Tenderich, the blogger from perhaps the most important diabetes blog, Diabetes Mine (http://www.diabetesmine.com) wrote an open letter to Steve Jobs lamenting the gap in design quality between medical devices and the iPod.4 Eventually a San Francisco-based design firm, Adaptive Path, came forward with a re-design of the insulin pump.5 This experience eventually resulted in the creation of a yearly design competition for diabetes devices. Each of these examples illustrates how online communities can have very significant impacts on innovation in health and public health. We just need to begin developing intentional strategies to manage innovation in this new mediasphere. Collective Intelligence: Extracting meaning and reliable content from a variety of sources is another role that social media can play in a world that we often characterize as one of information overload. Social tagging, filters, reputation systems, open innovation platforms, crowdsourcing and social ranking are features found in a variety of social media platforms and tools. New artificial intelligence tools are available to help us sort through networks and find the right expertise when we need it. Difficult problems can often be solved by asking the right question to the right social network, or finding ways to frame problems into modular components that can be worked on in small fragments of time. In many ways we are moving towards a world where solution finders are as important as problem solvers. Social Media Platforms and Collaboration: Nambisan (2009) 4

http://www.diabetesmine.com/2007/04/an_open_letter_.html

5

http://www.diabetesmine.com/designcontest/about

created a taxonomy of collaborative platforms such as those listed above and provides a useful analysis of how we can think about social media and cooperation in public health. There are three basic platforms that organizations are currently deploying: exploration platforms, experimentation platforms, and execution platforms. “Exploration platforms” are used to define what the problem is; they use experimentation platforms to test possible solutions to the problem; and they use execution platforms to disseminate the solutions. This typology is useful in helping us think beyond the “build a platform and they will come” notion that often results in platforms that fail to build communities and achieve any type of measurable outcomes. Each type of platform requires different skills and resources and represents a different type of question or problem that one is solving for. One of the key points I’ll be making in this report is that public health can be thought of as a collaborative platform. In order to move our thinking in this direction we’ll need to think through the ramifications of different platforms for different tasks. Three Types of Collaboration Platforms (Nambisan 2009) Objective

Exploration -Define Core Problems

Experimentation -Develop Solution Prototypes

-Connect with Problem Solvers Role of Lead Organizatio n

-Test prototypes in near-realworld contexts -Build a diverse -Integrate ideas coalition of from diverse stakeholders stakeholders -Give stakeholders numerous and varied forums to air their concerns

Desired Outcomes

-Identify potential problem solvers -Shared definition of

-Offer neutral environments for deep testing of solutions

-Assessments of possible

Execution -Build and disseminate solution templates -Help adopters adapt to system-wide changes -Facilitate the collaboarative development and diffusion of solution templates -Provide resources that adopters can use to manage the “ripple effects” that follow implementation

-Solution Templates

the problem

solutions

-List of potential solutions

-Solution Recommendatio ns

-Implementation standards -Rapid adoption of the social innovation

Nambisan concludes his analysis with some core capabilities that organizations will need to master to drive social innovation in the cooperation arena. The first is to develop a network perspective that entails becoming more strategic in how organizations work with diverse partners. This often requires a shift from playing a lead role in controlling activities in the collaboration to the role of championing of a cause. Appreciating the different roles and business models of diverse stakeholders is central. Plug and Play Capabilities are another aspect where organizations will need to become more flexible or modular. What this means is that organizations need to become more agile in how they deploy their expertise within the configuration of these networks. InnoCentive, the open innovation platform, for example, has the ability to conduct contests to solve problems across a wide range of domains but also needs to understand the intellectual property policies of firms within specific segments in order to work with their clients. Organizations also need to also develop a portfolio of success metrics that will work across the spectrum of partners. Nambisan thinks that developing these core capabilities will enable organizations to work across the government, business, non-profit divides that will be necessary to bridge given the complexity of problems we now face.

Open Health: Towards a New Paradigm for Public Health Innovation Social media, in my mind, is less about the technology (the media) and a far more interesting story about the social practices that they can inspire. Several years into the era of rapid growth of blogs and wikis we witnessed a dramatic increase in activities frequently described as “crowdsourcing” or new forms of cooperation emerged from the ability of like-minded individuals to find one another and collectively produce content, exchange ideas and work to solve problems. Howard Rheingold in is 2003 book “Smart Mobs” captured the ethos of the emerging assemblage of norms, technologies, and movements when after the 1999 anti-WTO protests in Seattle, the overthrow of President Estrada in the Philippines and the texting behaviors of Japanese teens all pointed to the growth of new forms of cooperation that were being enabled by pervasive computing, mobiles and what many refer to as “new commons” in the knowledge society (Hess and Ostrom 2006). The commons is becoming an increasingly powerful tool in the knowledge society as a space between public and private where resources can be shared. The phenomenal success of open source software is a prime example (Weber 2004). In health we see examples of new commons when a community shifts from viewing obesity as a problem of an individual who has a quasi-moral responsibility to regulate her behavior to fit a norm around body types to a framing where a community must rethink the walkability of a city, the politics of funding physical education in a school, food deserts in low-income neighborhoods, crime that prevents people from exercising and school lunch menus for healthier food. Open data policies from city governments create new data commons, in effect. These data commons then become a resource for building new services and platforms for the public. The health commons around obesity would also include the voices of those whose bodies are targeted by health interventions and their expertise and body politics views to derive a novel approach to obesity.6 One of the most important experiments in commons building at the moment is the Science Commons created by John Wilbanks (http://www.sciencecommons.org). The mission of the Science Commons is: “Science Commons designs strategies and tools for faster, more The framing of obesity might also include the neglected ‘disease(s)’ called mental health and trauma given a growing body of research that points to the role of childhood sexual violence as a causal factor in obesity for a significant number of women. 6

efficient web-enabled scientific research. We identify unnecessary barriers to research, craft policy guidelines and legal agreements to lower those barriers, and develop technology to make research, data and materials easier to find and use. Our goal is to speed the translation of data into discovery — unlocking the value of research so more people can benefit from the work scientists are doing” The Science Commons currently sponsors several distinct projects: •

The Health Commons (http://sciencecommons.org/projects/healthcommons/): a biomedical orientation and focused on therapeutic cures and consists of databases of tools used in drug discovery

•

The Neurocommons (http://sciencecommons.org/projects/data/): an open source knowledge management project for biologicals

•

The Green Exchange (http://sciencecommons.org/projects/greenxchange/): an open patent exchange for creating an innovation eco-system for green technologies

There are insights here for how public health organizations can create pooled resources that include data, knowledge assets, tools and templates that can be adapted to specific contexts and problems. Later in this report where we will examine mapping tools, data visualizations and social networking platforms that hopefully will illustrate the range of possibilities. The commons is also a space, either physical or virtual or both, where users and contributors to the commons can tinker and share tools. In other words, the commons can become an innovation commons. Eric Von Hippel (2006) has coined the term “user-led innovation” to describe how end-users of projects often tinker with and modify products to suit their individual needs. Companies that have developed relationships with end-users are then in an ideal position to take advantage of these modifications and build new lines of products and services from what they learn from end users. Central to the concept of user-led innovation is the notion of the “toolkit”. When you go to a hardware store to buy paint they have a toolkit that readily creates any desired color from a toolkit of color palettes and computerized mixing machines. In healthcare we have not been that innovative in developing toolkits today despite many options for doing so (Demonaco and Von Hippel 2007). For example, with diabetes we trust people to prick their fingers and check their

glucose levels, then self-manage by injecting themselves with a potentially very deadly drug, insulin. On the other hand, with congestive heart failure or high blood pressure where there are simple tools available for patients to measure their health status (scales for weight with congestive heart failure and home monitoring kits for HBP), yet management of congestive heart failure and high blood pressure typically entails intensive, expensive clinical management. Self-management regimes with adequate toolkits have proven to be effective and cost-efficient. The barrier to adoption turns out to be the way in which toolkits alter professional relationships and may shift power relations in clinical encounters and roles. We might want to think about how we can create new innovation commons and develop toolkit and social networks of stakeholders with incentives in alignment to surmount these barriers, but in ways that move beyond personal healthcare and into the civic engagement arena of public health. We can also use the commons to reframe problems as a community issue rather than one of individual responsibility as has become the case in recent years as the health sector becomes more consumer focused and emphasizes consumer responsibility. This often leaves out the structural issues and the issue of structural violence. Framing issues in terms of responsibility or the commons is a political act. The UK Design Council’s RED Project provides the most useful insights into how to rethink health and healthcare from an “open” perspective through its “Open Health” Project (http://www.designcouncil.info/mt/RED/health/). Here, service design meets smart mobs in an approach to diabetes management that emphasizes designing for “desired health outcomes” rather than creating a program on the basis of existing healthcare infrastructures that are increasingly problematic for addressing chronic disease management. ActivMobs and interventions that were co-created with diabetics lie at the heart of the intervention. It is here that we see the potential for social media to be deployed in a strategic manner to change health outcomes and the institutions and policies that we will use to drive the future of public health innovation. The fundamental insight of the project was to build around desired incomes rather than working from within a dysfunctional system poorly designed for chronic disease conditions. As we experience the latest round of failed medical care reform this could hold potential for how public health professionals will need to think about social innovation that moves beyond merely enhancing access to a poorly equipped system. There are insights and tools for building bottom-up systems, particularly if we look at the social innovations taking place in developing country contexts such as India.7 7

See Aravind and Narayana Hrudayalaya Hospitals for example.

We will now look at some of the building blocks for creating an open health framework for innovation. This will require a brief tutorial to social media and the manner in which these tools are being deployed. We’ll begin with a discussion on social networks and organizations. Networks and Network Organizations in the Open Health Model: There is growing recognition that we are increasingly living in a networked world. One of the drivers of an emergent open health paradigm is the way that organizational forms are changing due to the collaborative tools, proliferation of data and data analytical tools have the ability to facilitate more networked or virtual organizational forms. We saw this with the manner in which WHO facilitated a network of collaborating research centers with the SARS outbreak.8 Later we’ll see how cloud computing and Software As A Service (SaaS) are creating opportunities as well. If we think about the nature of most health issues we see that they are outcomes of networks. There are networks of different service providers, health outcomes are the result of different networks of microbes, genetics, environmental factors, social structures, medical and other forms of knowledge, transportation policies, the built environment, etc.9 Health itself is a network phenomenon. Yet, we are using analog structures to deal with network problems. Our institutions have done little to evolve to match the nature of the challenges. New technologies and social practices also mean new organizational cultures are emerging. The 2003 SARS outbreak provided some insights on how we will increasingly have to work. When WHO created a network of collaborating institutions to identify the unknown virus this work was accomplished in short order via virtual collaboration. Too often we’re trapped within the iron cage of bureaucratic hierarchies and organizational charts that can become a significant barrier to innovation. Many of the practitioners of open innovation have observed that innovations can come from anywhere in the firm if we open our minds to who can innovate and why and actually pay attention to informal networks as well as create intentional innovation systems to bring knowledge in from the edges. Here is an organizational hierarchy on paper vs. the social network of the organization in practice to illustrate my point: See James Surowiecki (2003). The High Cost of Illness. New Yorker, May 12, 2003. 8

Actor-Network Theory developed by Bruno Latour should become part of the public health curriculum and goes a long way in helping us to understand the complex ecologies of health issues more broadly. 9

Figure XX: An organizational chart vs. actual organizational networks

To illustrate how networks and open innovation can work together we can look at some of the examples provided by the open innovation platform InnoCentive. InnoCentive is a platform where companies can post difficult problems that need to be solved and individuals registered on the site can earn small rewards or recognition for solving a challenge. The company was formed by the pharmaceutical company Eli Lilly to find a way to solve for difficult scientific problems that they were unable to solve internally after many years and millions of dollars. Frequently these seeminingly intractable problems were solved in a matter of weeks by individuals from half way around the globe coming from a very different disicipline. For example, a lawyer who was good at chemistry solved a major industrial problem in his spare time. An x-ray crystallographer from Moscow solved a challenging physical chemistry problem that Eli Lilly could not solve in 3 years. Overall, roughly 30% of the challenges have been solved. The Rockefeller Foundation is now using the platform for difficult global health and development challenges. Paying attention to actually existing networks and building intentionally open systems may help us to open up organizations and create more dynamic and resilient institutions if we develop a new set of managerial skills to accompany the emerging open health landscape. I recently attended a workshop at the University of California, Berkeley on H1N1 as part of a social science study on networks of expertise in public health. Throughout the 1 ½ day workshop we consistently heard some of the leading influenza epidemiologists speak about the need to practice “sound science” while in the same breath speak about

how they had to make decisions in a rapidly changing, politically complex world through “gut feelings”. These “gut feelings” are a form of tacit knowledge that is grown through the less formalized networks that the organizational hierarchies depicted in the first illustration above may overlook. We now have tools to help facilitate the sharing of tacit knowledge and more effective forms of cooperation if we learn to deploy social media tools with the right organizational fit. Part of creating more resilient architectures of organizations and information will be to understand the nature of networks within organizations and network organizations. To help us understand the emerging network cultures we may want to explore the literature on heterarchies, or the use of complex networks, to address organizational problems (Stephenson 2009). Take someone with a chronic disease like diabetes. They have a physician who they see for their illness but on occasion they end up in the hospital and then a physical therapy unit, a nutritionist, etc. Therefore a network of providers covers the spectrum of needs. But collaboration across the spectrum is rare and fragmented delivery of care is the norm. A heterarchy is a system where at least three separate hierarchies collaborate to accomplish a collective good that is more complex than the sum of the parts. Each part attempts to optimize its own success criteria but they must all cooperate. This essentially describes much of public health or most organizational cultures today, but unfortunately, as Stephenson notes, heterarchies are managed rather poorly and we see the Enron’s, FEMA with Hurricane Katrina as examples of poorly managed heterarchies. Competition between peers is the norm. However, we can find examples such as the City of Philadelphia that mapped all of the parties working on urban renewal in the city. This network analysis enabled them to identify important nodes in the network who were doing exemplary work and then became assets that helped inspire one of the more dramatic civic engagement for urban renewal programs. In essence, they created a virtual organization through fostering trust across the most important nodes. The tools and platforms we’ll be assembling here will hopefully inspire thinking as to how we can weave the social technologies with software to enable new organizational forms such as heterarchies to accelerate. Networks and Health Policy Innovation. An observation: we shape our networks and our networks shape us, as one follower of Marshal McLuhan once observed. As Albert Lazlo-Barabasi states in another manner: "The diversity of networks in business and the economy is mindboggling. There are policy networks, ownership networks,

collaboration networks, organizational networks, network marketing--you name it. It would be impossible to integrate these diverse interactions into a single all-encompassing web. Yet no matter what organizational level we look at, the same robust and universal laws that govern nature's webs seem to greet us." Lazlo-Barabasi’s work has important implications for how we will need to think about public health innovation and organizations in the future. We’ve always had social networks but now the platforms and tools to both analyze and mobile networks for social change are revolutionizing the nature of politics, communications and collaboration. This means that the nature of organizations is going to change in important ways going forward. We’re in an experimental period at the moment where organizations are playing with new organizational forms, democratizing decision-making and looking for ways to innovate in more decentralized ways. Even many funders such as the Case Foundation, Cal Endowment and Rockefeller Foundation are exploring ways to take advantage of network effects to do philanthropy differently. This period of changing organizational forms and norms does not mean an epochal shift—older forms and norms will persist so we are likely to see many different hybrid models emerge. Therefore a certain amount of critical thought will be needed to know when to deploy social media and social networking tools and when to use traditional media and approaches or to deploy hybrid concepts and strategies. Social media are social in the sense that they enable “many-to-many” communications and connections and they can be both real-time and asynchronous. Scearce et al. highlight the nature of this networked reality where people can: 1) self-organize without centralized planning and infrastructure (remember the progressive reaction against the Swift Boat campaign in 2004 where bloggers created databases overnight that launched a campaign against Sinclair Broadcasting that destroyed $100 million in market capitalization in several weeks10) 2) spread ideas and form groups more quickly 3) overcome barriers to collaboration to find others who share specific passions and to take on larger projects that would have been previously unthinkable 4) access knowledge, leadership and expertise in places that were once beyond their reach 5) share information quickly and with little effort, making more resources available and enabling people to easily build on the 10

See Yochai Benkler (2007)

work of others 6) come together and disassemble as needed to achieve goals (a Hollywood studio model of working) Now to take these insights to health policy and public health we need to think where health policy innovation might move in the context that we’ve been describing so far. Warner and Gould (in Kickbusch 2008) write that health policy innovation only happens when high-level intentions are linked up with and make a change to ‘practice’---what I refer to as social innovation. Historically, policy changes have been thought about in mostly vertical terms, however, the future will lie in thinking about the horizontal connections across sectors and policies and from the bottom-up. We’re very accustomed to the calls for intersectoral collaboration and horizontal approaches, we just don’t see the calls put into practice in a successful manner that often, if at all. Part of this is our lack of understanding of how to think about governance of network organizations and how to build network organizations that are more than traditional partnerships. Warner and Gould are attempting to identify the key challenges to working in this manner and how we might move forward in thinking about network governance. While rarely spoken about in public health, this will likely be at the center of public health innovation in the future. The social media technologies and tools that receive the focus around innovation, should be viewed as tools to be appropriated for creating the next generation of networked public health organizations and strategies rather than stand alone technological innovations in their own terms. Social innovation is about connecting the social technologies to software or hardware technologies to produce social outcomes. Some of the key challenges for multi-sectoral policies include; 1) addressing the fragmentation of service responsibilities across agency boundaries, 2) competition-based systems of governance, 3) differences in planning cycles/procedures/horizons/information systems, 4) differences in funding mechanisms, 5) competing ideologies and values, 6) professional self-interest, 7) conflicting views about client/citizen/consumer interests and roles, 8) differences in legitimacy between elected and appointed agencies. These challenges are likely familiar to anyone in public health who has attempted to create a major multi-sectoral initiative and many of the collaborative platforms already mentioned were created to help build bridges or consensus around divisions arising out of these types of challenges. To build on the lessons from the platforms discussed so far, we can explore some of the thinking that Warner and Gould (ibid: 131-145) have developed for networked governance. One of the first approaches is to create a “virtual neutral space”.

Imagine an organizational chart with interconnected boxes. The space between boxes is the white space and indicates an absence of organizational activity. These are both constraints and opportunities where networks can create opportunities and redesign services. It is interesting to note here the work that is taking place in the social capital/social venture world with the development of xigi.net. Xigi.net enables users to see the connections between different players in the social venture capital world and the projects they’ve worked on. In essence, one can visualize the networks of social venture capital and more readily see gaps, areas of duplication (although this would take more than just seeing connections). But the general gist of the tool is useful here---we could use similar tools in public health in designing networks to more readily see the gaps and duplicative services. We can also begin thinking about how to reframe a problem in terms of the commons, or a public good that is a space for sharing expertise, funding, intellectual property, etc. and how to build the trust and governance structures to maintain the commons while addressing problems such as “free-riders”. Xigi.net

Source: http://www.xigi.net/index.php?gallery=1&map_id=6 (Lucy Bernholz map)

Warner and Gould use a version of Leavitt’s Diamond that replaces ‘goals’ with ‘culture’ and ‘participants’ with ‘governance’ to serve as a mental model for how we can think about the impact of new networking technologies. The introduction of new technologies forces us to reconsider the changes in culture and governance as we design new networks. The need to think how a culture of cooperation can be developed will be essential. Frequently this requires a strategic framework that can think through the short-term costs and benefits of closed system thinking versus the long-term costs and benefits of more open, cooperative systems approaches and the opportunities that may open up through moving beyond siloed knowledge systems. Leavitt Diamond

Our understanding of the social determinants of health grows broader almost daily. What this means is the underlying rationale of movements such as the Healthy Cities/Communities movement are growing in importance. The built environment, social inclusion in the context of increasingly digitalized lives, pandemic preparedness that requires cooperation across political boundaries, the health effects of climate change, the expansion of the territory of health into more sectors and aspects of people’s lives (Kickbusch 2008) and an extremely fragmented system of governance for global health demand new approaches. Policy networks that cross geographic boundaries, approaching health as a global public good or as a problem of the commons will grow increasingly important. We’ll also need to become conversant in the network theory and understand the typologies of networks that are possible for a given configuration of organizations, problems, funding, governance, type of problem, etc. We see some early signs of what may be emerging in the public health

and social sectors with examples such as Habitat for Humanity Egypt’s new network approach to housing that has enabled them to move from a production rate of 200 houses per year to more than 1,000. 11 Scearce et al. also point to the work of Boston Green and the Healthy Building Network (funded by the Barr Foundation) as another example of a network mindset for their use of social network maps to bring together public health and environmental advocates for policy advocacy efforts around building standards. The concept of the “platform” is growing in importance so I want to turn to one recent example of how this has worked for the development of civic applications in Washington, DC.

See Jane Wei-Skillern and Kerry Herman (2006). “Habitat for Humanity-Egypt.” Harvard Business School Cases, October 3, 2006 (in Scearce et al. 2009). 11

Citizen-Driven Innovation: Apps for Democracy and the City as Platform for Innovation. In 2008, Washington, DC’s Chief Technology Officer, Vivek Kundra, launched a project “AppsforDemocracy” that remains one of the leading citizen-driven innovation examples to date. Earlier in the year Kundrek’s office adopted an open data policy that utilized RSS feeds (RSS means “really simple syndication” and allows followers of a site to be notified when the site is updated) to enable citizens to download all sorts of local government data from trash collection to government purchasing behaviors, in all, there were over 200 feeds. Once the data were available the public was encouraged to identify problems that were in need of a solution. Then developers could submit software solutions for the problems. The first edition of Apps for Democracy yielded 47 web, iPhone and Facebook apps in 30 days - a $2,300,000 value to the city at a cost of $50,000! 12 This represents a 4,000% ROI. Compare this to the old way of doing municipal software applications: several years of development to the tune of several million dollars and less than stellar software produced. We are also learning that the more people use data, the better the data become (Zittrain 2009). Crowdsourcing solutions for citizens, businesses and government employees produced better solutions in a matter of weeks and at a fraction of the cost. In an era of dramatically reduced financial resources the public health sector must search for new ways of innovating within tighter constraints and we feel this is one potential solution. As illustrated in Beth Simone Noveck’s “Wiki Government”, social media are changing the way both governments and non-profits work. These platforms enable us to harness the power of open data and open source software to catalyze “citizen-driven innovation” toward a system that creates innovations around expressed needs and helps create stronger institutions built on trust and responsiveness. Government, or in our case, public health professionals and health service providers, can work to become civic enablers in a 21st century context where rights and citizenship increasingly mean becoming technologically proficient citizens. As AppsForDemocracy demonstates, the results, when government builds platforms that enable civic participation and innovation, can be astounding. We can contrast this experiment with the traditional view of government as a “civic disabler” (Sirianni 2009:8). This is the view that too often government puts up too many barriers, does not produce the right incentives, or overinvests in technical and bureaucratic tools and becomes part of the problem that it is attempting to solve. The civic disabler role arose from the command and control methods of a regulatory state that is also responsible for the design of bureaucratic 12

See http://www.Appsfordemocracy.org

structures with silos and narrow rules. These bureaucratic structures have been a major challenge to thinking more systemically about problems. Our challenge now is to create the incentives and platforms that can catalyze more collaborative action across the silos. The critique that Sirianni provides above is not a position spoken from the right-wing of the American political spectrum either, for her critique also addresses the tendency over the past several decades to try to frame citizens as consumers through the use of market-based tools. This view of the citizen as consumer runs the risk of undermining civic engagement. AppsforDemocracy.org is now in the second generation of activities where successful programmers may now have opportunities to scale up their businesses through access to venture capital and government funding. Here we see the next generation of social innovation at work —the public sector acting as enabler of innovation from below. These innovations can then attract the seed capital from the public and private sectors to scale up. This is a far more efficient manner of producing new ehealth and mobile health applications that respond to user needs. This is the world of “Government 2.0”, that is, a move from government as “vending machine” to government as platform.13 The next generation of public health innovations will likely extend this thinking to how public health can play the role of innovation platform for engaged citizens. Our plans for the Public Health Innovation Center at the Public Health Institute in Oakland, CA include plans to build on this experience for the health sector and to create an “AppsforHealth.org” platform in the very near future. The platform we’re creating can also serve as a “listening post” for both entrepreneurs and funders and help catalyze the market for health applications and innovations. Our understanding of behavioral economics, gaming and persuasive technologies can facilitate the creation of “choice architectures” and systems of incentives/sanctions that can help modify behaviors toward healthier outcomes (Sunstein 2008). Many of the existing platforms and providers of solutions for civic life, city planning, social mobile applications can be readily deployed for health-focused applications if the incentives are there. By creating a platform for designated health applications we can create a type of innovation commons where potential investors and government will be able to find promising entrepreneurs in the health application space and offer the opportunity to scale up viable solutions. The recent debates (or some would argue, lack of debate) on health care reform in the US illustrates the complexity of health issues and political fragmentation. With deadlock in government producing See http://blogs.law.harvard.edu/palfrey/2009/07/03/tim-oreilly-onthe-history-and-future-of-government-20/ 13

anemic policy responses to major health issues we will have to develop additional strategies to create bottom-up approaches to health reform in the future. We no longer, if ever, have A PUBLIC, but rather multiple publics. Many health issues can no longer even effectively be resolved through traditional partnerships but require much larger, broader and more diverse networks, or what Robert Agranoff (see in Siranni 2009: 16) calls “complex value creation networks”. This demands new approaches to civic problem solving and the platforms for collaboration, content co-creation and implementation as our earlier discussion on platforms mentioned. These demands and opportunities will likely change the way philanthropy and government funding as well as public-private partnerships will work in the very near future. Public health needs to learn from this experience and create spaces where targeted health innovations can be produced, or better, coproduced. What if we were to begin building innovation platforms for health, and more specifically public health, that would be capable to developing tools to manage chronic diseases, map public health problems locally and connect problem solvers to those in need of solutions, or enhance the ability of marginalized communities to bring attention to community development issues that bear on public health outcomes? The ability to map and visualize connections between the built environment, social determinants of health and health outcomes is becoming much easier with the development of open APIs, Google Maps, infographics and data visualization tools, and mobiles. Open data programs are beginning to proliferate, and with the right software, empower citizens to use data in their daily lives. And take a look at the results. In the world of mash-ups Google Maps dominate with over 45% of all mash-ups on the open API of Google Maps as compared to 4% and 3% of all maps on MicroSoft Earth and Yahoo Maps that are both closed systems. The healthcare space is full of market failures where incentives do not exist to keep people healthy. We believe that an open innovation portal that builds upon expressed needs of citizens has the potential to address at least some of these market failures. This is where we can begin to think of a different conceptual model for public health. Or, how can public health become a platform that enables citizens to produce better health outcomes in a co-created manner with public health experts? Constantio Sakellarides et al. (in Kickbusch ed. 2008) have called for new ways of organizing health systems for the 21st century that is centered around the citizen-user. Health is becoming far more knowledge-centered and literacy dependent. Sakellarides translates this into a need for citizencentered health information systems. To date, most of our discussions on health information technologies remains very clinician-focused.

While clinical systems are important, we need to broaden the vision for health applications toward tools and toolkits that can keep citizens healthier. There is a gap when we think about the personal use of mobiles and applications and creating citizen-driven, community computing platforms for health, such as the ePHIR (electronic personal health information record where data can be shared (Sakellarides et al 2008)). We’re still living with the legacy of traditional public health approaches based on command-and-control systems and need to rethink our strategies to build upon the actual mobile practices of citizens. As we move from a command-and-control system to a more integrated health governance model the mobile will become increasingly important. The cost of development of mobile applications is rather low but the voice of public health has been noticeably absent. We would like to change this and create a platform that can source some of the best minds in programming with the needs of citizens concerned with public health. Our platform can serve the larger citizenry as well as provide a source of software solutions to cities and states around the US. We will also have the potential to develop mobile health solutions for developing country contexts as well as use the platform to adapt successful innovations from the African context, for example, and adapt these solutions to the US healthcare system. Urban Informatics and Public Health: The Next Generation of Healthy Cities. The emergent field of urban informatics14 is beginning to grow due to the ability to collect vast amounts of data about the behavioral patterns of people in cities. From cellphone and geolocation data to sensors data are being collected and there is growing interest in creating participatory urban informatics groups who can address issues such as sustainable growth, transportation policies, environmental health and community planning through the creation of user-friendly tools, persuasive technologies (eg. dashboards that enable people to see their consumption pattern such as with the Prius fuel consumption dashboard), public art and the use of public spaces to highlight community issues. To date most government use of urban informatics remains top-down. The AppsforHealth platform will help facilitate more community-based approaches to urban or community informatics. For example, Digital Urban Living (http://www.digitalurbanliving.dk), a Danish, university-based organization uses interactive media façades to engage communities with their own interpretations of climate change in public spaces. This approach is useful in that it illustrates the difference between pushing For some interesting research examples of university departments engaged in this type of research see: University of Oulu, Finland (http://www.urban-interactions.net/ubiprogram), 14

information out to a public versus using co-created interfaces that engage communities around their (re)framings of issues. In the health sector this is one of the critical barriers we face; how to engage communities and individuals. Cocollage (http://www.cocollage.com) uses public spaces to enable citizens to share ideas and photos in order to create new types of relations in public spaces and address the “bowling alone” problematique that Robert Putnam construed as a major barrier to civic action. Much of the research in urban informatics is about how we can make data readily available and usable so that the tools can be built to make the city more efficient and user-friendly. Sensors, public displays, mobiles and open source software can come together, hopefully in a sustainable manner, to provide necessary knowledge resources. The following are important examples in the urban informatics space that could be useful to public health: •

Urban Atmospheres (http://www.urban-atmospheres.net/): an Intel experiment to use bluetooth and mobile devices to capture new data on urban spaces

•

SENSEable City-MIT (http://senseable.mit.edu/): collecting realtime data on the built environment so that we can rethink design of cities and anticipate changes

•

BioMapping.net: a community mapping project being deployed in cities around the world to understand the emotional valence of sectors within cities

The idea of public health or the city as a platform is already beginning to emerge on a small scale in the social mediasphere. Below I’ll provide several examples of experiments that are ongoing that are signals of some of the changes we’re beginning to see. MySociety.org (http://www.mysociety.org/): a UK-based platform that hosts and develops a broad range of democracy platforms such as fixmystreet.com, whatdotheyknow.com (for government transparency), theyworkforyou.com (covers MPs), etc.

Villes 2.0 (http://www.villes2.fr/): A French collaboration between Fing and Chronos to re-conceptualize the “city as an open innovation platform” that catalyzes new partnerships for regional problems. The project is attempting to re-imagine the city or city planning as a platform that can be modified by the users of the city. This will be accomplished through the identification of resources that can be shared by organizations and citizens combined with social media tools and platforms that are user-friendly.

US government experiments in Government-Citizen Cooperation: The EPA has launched an experiment in co-creation with citizens to develop Public Service Announcements. A video contest for the best PSA around Water Quality was recently launched:

Health and Human Services launched a similar experiment through the Flu.gov site for influenza prevention PSAs:

Meanwhile, the city government of San Francisco has begun using Twitter for 311 services and Gavin Newsom has been quoted as saying that these free services, such as Twitter, now save the government over $100,000.

While each of these programs represents an example of experimental research we can see the opportunities for creating tools based on the research above that could play a role in developing “persuasive technologies” that can lead to positive behavioral change towards wellness and sustainable livelihoods. Cities that become adept at cocreation and urban informatics may find that they become more competitive cities in the future. In short, AppsforHealth.org can become a platform for sparking innovation in the next generation of

community health efforts. Sirianni (2009) argues that we are now living in an era where collaborative governance is necessary. Increasingly we must move from the notion of citizens as customers or passive recipients of government policies and data to seeing citizens as “co-producers” of knowledge and policies. Those who work in the public sector or work to build necessary public goods such as public health must now think in terms of “civic policy design” and how government and public health agencies can think of themselves as platforms that enable coproducers to engage and support our work. From thinking in terms of community assets to supporting citizen scientists, we are witnessing an important shift in how we work with the rise of social media or web 2.0 tools. Archon Fung and colleagues from Harvard University see these new tools as shaping a new “collaborative transparency” that enable interactive and customized tools that empower information users to provide and pool much of the data (Fung et al. 2007:157). Prior to the present upsurge in interest in social media we could see this at play in the development of the Oregon Health Plan as well as through a myriad of environmental health movements where scientists and policy-makers have engaged much more closely with civic partners and citizen scientists. Residents of California, for example, have experienced the shortcomings of traditional governance structures in recent years through the budget stalemates that frequently paralyze state government. As Sirianni (2009) notes, “legislatures are often simply incapable of fine-tuned deliberation on the many aspects of the many policies with which they must deal and for various technical and political reasons are prone to pass vague laws, which require administrative agencies to become policymakers through their exercise of discretion.” Furthermore, public health officials are forced to work within a chronic situation of funding crises. But re-orienting our innovation strategies and health governance models we can find ways to innovate and provide better services within tighter cost constraints. Platforms such as AppsforDemocracy or AppsforHealth can then be deployed strategically to drive innovation in periods of economic and political stagnation. In fact, they may become absolutely vital in coming years to ensure that citizens get the necessary services that they have come to expect from government. AppsforHealth.org will not only work as an innovation platform but we hope to design our intervention in a way that can provide new lessons for how to rethink governance, public health and cooperation in a network society. We need to begin thinking about health literacy in a digital age and how to create the tools for citizens to empower themselves, not by calling them consumers but through the creation of platforms where

they can access data as well as use and share data in their day-to-day activities and prevention strategies. Kickbusch et al (2008) point toward a future where we can begin to see collaborative innovation systems which build on the experience of the PHR in healthcare to create the Public Health Information System or PHIS that enables local networks of individuals, citizen organizations, patient groups in collaboration with health organizations can collaborate for enhancing citizen health literacy, improved prevention strategies and new forms of collaboration that can produce better health outcomes from our current medico-therapeutic system.

Social Media Tools and Platforms: Mapping When Google Maps opened the API up to developers to build maps on top of the Google platform this unleashed a great deal of innovation in the mapping domain and we began hearing about the rise of the “geospatial web”. As more data become tagged with location-based tags and the prevalence of sensors grows there are opportunities for collecting data on environmental health and empowering more bottomup citizen science initiatives. While maps have a long history of being used to marginalize communities (there is a great deal of cartographic anxiety in much of the critical geography community) there are now many opportunities to counter this past history and use maps to tell stories, to make the invisible visible and promote more progressive public health outcomes. This does not mean we need to drop our reflexivity towards the past but more participatory approaches to community planning are now available and the tools are becoming more user-friendly. Furthermore, a number of the applications we’ll be covering here are becoming mobile, that is , available on the iPhone Opportunity Mapping: Mapping opportunity in the region requires selecting variables that are indicative of high (and low) opportunity. In this context, high opportunity indicators would be the availability of sustainable employment, high performing schools, a safe environment, access to high quality health care, adequate transportation, quality child care, safe neighborhoods, and institutions that facilitate civic and political engagement. These multiple indicators of opportunity are assessed in a comprehensive manner at the same geographic scale, thus enabling the production of a comprehensive “opportunity map” for the region. Open Street Maps and User-generated maps: Inspired by Wikipedia Open Street Map15 was created as a tool to enable end-users to edit and build maps. The maps are published under a Creative Commons license and there is an Open Street Maps Foundation with the mission of encouraging growth and distribution of Open Street Maps globally. Part of the mission is to provide free services that would otherwise entail use of more expensive GIS/mapping services and expertise. Most maps have technical and legal restrictions on their use. Open Street Maps has recently played an important role in remapping Palestine after the 2009 Gaza War where BBC was using dated and inaccurate maps. Within a week, Open Street Maps produced better maps that could be used by human rights and humanitarian organizations delivering aid to the Occupied Territories. One can see a year’s worth of edits via a video here: http://www.worldchanging.com/archives/009381.html 15

There have been other examples of humanitarian groups using the maps to coordinate services and avoid unnecessary duplication of relief services. In the last year over 140,000 miles of highways have been added to the map of Africa via Open Street Map.16

In the US, organizations have used Open Street Map to tell compelling stories about education policy reforms:

Other mapping services have focused on making various forms of http://developmentseed.org/blog/2009/apr/22/thousands_of_miles_ad ded_open_street_map 16

social data more visible, such as crime. At the present time there are numerous crime mapping platforms available. These platforms also raise a number of ethical and ethics of representation issues and need to be examined critically. At a recent Netsquared Conference in June 2009, activists raised questions about the manner in which maps could be used against communities of color. Proponents of the maps made the case that with some of the tools such as SeeClickFix people could track drug dealers in neighborhoods and report and document anonymously. For many community activists with negative experiences with local police forces this was a worrisome development. The founders of SeeClickFix reported that there were examples of community activists and residents using the tools to report police violations as well. But clearly we will need to encourage a robust debate on the ethics of bottom-up mapping and not just assume that bottom-up absolves us of ethico-political debate and analysis.

Maps are of growing importance in the sustainability or “green health” field as well. Urban EcoMap (http://sf.urbanecomap.org/) is about understanding where greenhouse gases come from in given neighborhoods. Users can explore the interactive maps to obtain a better understanding of their neighborhood’s impact on greenhouse gas levels. The site also has tools for creating an action plan for reducing carbon emissions through transportation, energy and waste policies and one can set goals for the neighborhood as well.

We can also see how maps are being used to tell stories in policy debates through the example of Barack Obama’s Organizing for America’s Health Care Action Center’s use of a mashup that allows people to merge location data with a narrative about their health care struggles:

Open Data: Several years ago a movement started in the UK called “Free Our Data” (http://www.freeourdata.org.uk) that pointed out that many commercial entities such as Google and Amazon.com free up data linked to applications or APIs for Google Maps, for example, yet many government agencies funded by tax dollars keep data beyond

the public eye and in formats that are not readily usable by the average citizen. In fact, there were commercial entities charging the public for access to data paid for by tax revenues. Using the example of Google Maps where the API was open and enabled a great deal of innovation on the Google Maps platform, they launched a movement for open data in the name of public sector and citizen-driven innovation. Additional organizations such as “Mash the State” (http://www.mashthestate.org.uk) joined the fight for open data and in the US there is now a great deal of local and federal activity around open data projects. The Obama Administration through the likes of Vivek Kundra as the Chief Information Officer in the Administration have created websites and tools for enhancing access to public data. The drivers behind this movement include a growing demand for transparency in the wake of the Bush Administration’s excessively closed governance model which has been viewed as prone to corruption, political manipulation and poor governance at best. Several organizations in the US have been leading the charge in the public sector, namely the Sunlight Foundation (http://www.sunlightfoundation.org) and Maplight.org that have developed numerous visualization tools to reveal connections between politicians and lobbyists (http://www.sunlightfoundation.com/projects/2009/healthcare_lobbyist_ complex/ and Open Congress (http://www.opencongress.org/)), stimulus tracking tools (Stimulus 360 (http://github.com/sunlightlabs/publicmarkup/tree/master, Recovery.org, Stimulus Watch (http://www.usbudgetwatch.org/stimulus)), , public markups/annotations of bills (http://github.com/sunlightlabs/publicmarkup/tree/master), and the number of widgets and transparency tools is growing almost daily. The development of tools does not necessarily mean that we have complete transparency in government and any visitor to the Sunlight Foundation blog will find a robust discussion of poor quality data or rhetoric not yet matching reality. Stamen Designs has created one of the most interesting transparency tools to track stimulus funding in the State of California (http://www.recovery.ca.gov/HTML/RecoveryImpact/map.shtml):

Local governments such as the city governments of Washington, DC, San Francisco and Vancouver, Canada have recently launched open data policies. The effort in Vancouver has been characterized as an effort to “make the city think like the web”17. That is, how can we make the governance model of the city begin to look like the characteristics we find in web 2.0, participatory and open. Some of the principles here include using open source software for municipal services. The web model they use is the Mozilla Foundation’s Firefox browser, an open source browser that has flourished due to donations of intellectual labor of users and programmers who have helped build out the functionality. The rationale follows the observations that Sirianni (2009) made earlier, the complexity of political life and publics is becoming sufficiently diverse that typical command and control models are becoming brittle. The way to build more resilient systems is from bottom-up, co-created methodologies. Open data policies are the enablers of this to happen. Next, cities will have to adopt open standards so that data and software solutions are interoperable. When these conditions are met we can begin to see the foundations for new platforms that facilitate citizen participation and innovation. Some existing examples of these platforms would include SeeClickFix.com. SeeClickFix is a platform where citizens can “tag” problems on a map and point out to local government officials when a problem needs to be resolved. The application is now available on iPhones where your geolocation data can be readily tracked. When problems can be “seen” or visualized there is a greater likelihood that local movements will form to work with government to resolve the problem. Furthermore, http://www.slideshare.net/david_a_eaves/creating-a-city-that-thinkslike-the-web-vancouver-remix-1741369 17

numerous studies have shown that the more data are used, the better the data become (Zittrain 2008).

Transparency: The previous discussion on open data highlights the growing political push for transparency in government, foundations, corporations and NGOs across the spectrum. Fung et al. (2007) note, however, that not all transparency policies are equally effective. We need to think beyond transparency as a virtue in itself and think about what constitutes a good transparency policy. If the data or activities that are being “opened up” do not lead to positive social outcomes then the particular transparency policy has obviously failed to achieve the desired political outcomes. If there are no incentives for disclosers to open up data then we may not see the necessary outcomes. In public health there have been several transparency focused initiatives that are worth following. In the UK there is a food hygiene rating system for restaurants called “Score on the Doors” (http://www.scoresonthedoors.org.uk/) and across the corporate sustainability space we see numerous endeavors that assess products and/or companies and their relative performance in sustainability, health, human rights or social justice causes: •

DotheRightThing.com

•

ProjectLabel.org

•

GoodGuide.org

Good Guide is one of the most sophisticated in the moment and Daniel Goleman’s treatment of the organization in his “Ecological Intelligence” book is worth examining. Goleman is interested in how we can get the right level of information to consumers at the right time so that

consumption behaviors change and produce social outcomes. Industrial ecologists who work in the area of life cycle assessments (LCA) such as Dara O’Rourke, the founder of GoodGuide.com, are leading the charge in this arena through the creation of platforms that are capable of collecting the most important data and then finding ways to lower the costs of information access. Goleman quotes Nobel economist George Stigler who pointed out that information has a price and that is the “cost” of searching for it. When you’re looking at the impact of a product on the environment, the social costs of global supply chains or sorting through the health data on every component of a consumer product these costs remain extremely high, unless you have a Good Guide to do this work for you. GoodGuide.com currently has information on over 70,000 products that comes from hundreds of databases with over 80 million bits of information. Good Guide now has an iPhone app that enables consumers to retrieve ratings of products as well as make lists based on the filters-social, ecological and/or health-that they prefer. They’re looking to the next generation of the service that will rely more heavily on sensors (RFID) and automatically alerts the shopper to the status of a product or an alternative route that analyzes one’s credit card purchases. While platforms and approaches may vary, the point is that new forms of transparency are making their way into the marketplace so that citizen-consumers will find it increasingly easy to consume through whatever normative filters they chose. Goleman interviews Archon Fung who points out that the first and second generation transparency efforts were largely regulated approaches, or top-down. Third generation, as seen in Good Guide, are driven by vigilant, active consumers, or citizens as I would have it. This need not be an adversarial, hostile relationship either. Progressive companies can engage with these citizens and innovate through engagement with feedback. I would add that many of the current clean tech/green business innovations are precisely this form of innovation– through an engagement with activist and critical discourses that were once adversarial in nature but companies adopting a more constructivist/open approach who actually embraced permeable boundaries of the firm stand a better chance of innovating. Goleman argues that while we see many examples of consumers exhibiting purely price sensitive shopping patterns that this will begin to change as these transparency platforms continue to grow and this will have profound effects on industries dependent on industrial chemicals. The chemical industry has a very different perspective on toxicity than consumers, particularly consumers demanding more access to data on the environment and their health, ie. biocitizens. And it is getting easier to find other biocitizens sharing your values and to

amplify one’s voice. One of the key disruptors in development is Earthster, a B2B, free, open-source, web-based program that enables businesses to obtain a snapshot of their LCA-supply chains. This enables businesses to benchmark themselves against industry averages. Here information becomes power for purchasers who can use this data as leverage with suppliers. The public sector can use this data to combine efforts to exert more power in the marketplace. In essence, you have a data commons for LCA that becomes the market maker! There will be tremendous opportunities for companies able to take advantage of this information and drive disruptive innovation. And this brings us to the next signal of the future of social media in public health with the use of data visualization tools and infographics. These tools are growing in importance as tools for sensemaking and influencing behavior as well as transparency politics. Data Visualization Tools: Edward Tufte is know as the “King of Data Visualization” and for his critique of PowerPoint as a tool for sharing knowledge18. His critique focuses on the manner in which PowerPoint works to reassure the presenter rather than enlighten an audience, relies heavily on flawed hierarchies of simplistic bullet points that give the impression of political neutrality. His work on visual literacies has helped spawn a wave of interest in infographics and data visualization tools. With the development of social media platforms many visualization tools have become much simpler for the average person not trained in graphic design or computer science to create visualizations of data. Sites such as Swivel.com, Many Eyes (http://manyeyes.alphaworks.ibm.com/) enable people to take data sets and carry out a range of operations to make the data more accessible, hopefully. There is also a site on Flickr.com (http://www.flickr.com/groups/datavisualization/pool/) with a wide range of data visualizations and infographics as well as the almost daily contributions of Good Magazine graphic designers to the library of infographics available on a vast number of social and political issues. The social media blog Mashable frequently carries stories on new visualization tools (see: http://mashable.com/2007/05/15/16-awesomedata-visualization-tools/) . In public health we have no shortage of data and yet there is hesitancy among many public health academics and professionals to engage in public discourse with data visualization or infographic formats that are being used by a growing number of blogs, non-profits, etc. Privacy of health data is probably the most often heard explanation as well as the fear of flawed analyses by those untrained in public health. Given the quality of work in many other http://www.edwardtufte.com/bboard/q-and-a-fetchmsg?msg_id=0001yB&topic_id=1 18

areas it would be naïve to dismiss much of the work we’re seeing developed and to find ways to engage and actually improve the data that public health practitioners are using. In fact, numerous NGOs have developed guides and tools for the general public and activists to take advantage of visualization tools and technologies in their advocacy campaigns. The Tactical Technology Collective (http://www.tacticaltech.org) has developed numerous guides: •

Maps for Advocacy (http://www.tacticaltech.org/mapsforadvocacy): demonstrates how to create maps and host them on a site for advocacy campaigns

•

Visualizing Information for Advocacy (http://www.tacticaltech.org/infodesign): a guide to best practices in information design and data visualization for advocacy campaigns

Columbia University’s Spatial Information Design Lab (http://www.spatialinformationdesignlab.org/) provides an excellent example of how data, mobiles and information design are coming together to offer new opportunities for innovation in public health. Based in the Graduate School of Architecture, Planning and Preservation, they are a think-action tank focusing on how to creatively use the visual display of information on cities, namely social data and geographic data, to help make sense of a growing amount of data that are available about cities and events. They recognize that the WAY we present data can be as important as the data themselves. Aesthetics matter (imagine that in your biostatistics course in a school of public health!). The list of projects currently under way include (http://www.spatialinformationdesignlab.org/projects.php):

The most interesting public health application involves visualizing data on air pollution and asthma in local neighborhoods.

Visualization tools, as mentioned earlier are increasingly being mobilized for advocacy campaigns as well. In many ways this is nothing new---politics have always been influenced by visual cultures and tools but now we have many more tools available to convert complex data sets into visualizations that tell stories across a wider range of communication platforms. Users can now take data sets and create a variety of visualizations on platforms such as: •

Swivel.com

•

Many Eyes (http://manyeyes.alphaworks.ibm.com/manyeyes/)

•

Many health 2.0 websites and mobile self-management platforms for diabetics and a wide range of other diseases have data visualization tools that enable users to chart their data and share within networks19

•

There are also repositories of infographics and data visualization such as the one below from Flickr.com

http://www.flickr.com/groups/innovation-dataviz/ In the most recent Apps For Democracy round the site, Datamasher.org at the time of this writing was one of the finalists. Data Masher allows users to select different datasets and create mashups or visualizations of the datasets. Others are using the combination of graphic design See http://beta.glucosebuddy.com, GlucoSurfer.org, SugarStats.com (accessible via Twitter) 19

and visualization to produce tools for informal sector workers to protect their rights in city spaces.

Making Policy Public is an organization that brings together designer and advocates and tries to make public policy issues more public through: While the effects of public policies can be widespread, the discussion and understanding of these policies are usually not. This series aims to make information on policy truly public: accessible, meaningful, and shared. We aim to add vitality to crucial debates about our future. At the same time, we want to create opportunities for designers to engage social issues without sacrificing experimentation and for advocacy organizations to reach their constituencies better through design. A jury of prominent design and public policy experts selects advocates and designers in a two-part submission process. The first call for submissions is to advocates, organizations, and researchers with a public policy issue, problem, or system that needs a visual explanation. The second call is to graphic designers, visual artists, and other creative workers. The jury chooses collaborative teams and announces them on the Making Policy Public website. CUP provides the collaborators with a working stipend, project management, and research assistance. CUP publishes the resulting fold-out poster and gives 1000 copies to the sponsoring organization for use in their advocacy and education work.”

The trend towards greater use of visual tools is being fueled by the proliferation of data that are available for public use in recent years. As open data programs proliferate and mature we will likely see even greater political contestation over the meaning of data when these very same data become used more frequently by a wider range of citizens and organizations. A visual literacy around information aesthetics will grow in importance as not all visualizations are created equally. Blogs such as FlowingData.com and the infographics team from Good Magazine, which has recently carved out an important niche around the development of compelling infographics and data visualizations on sustainability and social issues, have become important sites for discussing and keeping abreast of the tools available. Andrew Barry (2003) discusses the politics of data in the UK over air pollution that may give us a sense of what the future holds. When the government installed public dashboards in London and along major freeways in the UK that gave readings of current pollutant levels there were some unintended political ramifications. The particular pollutants measured and levels of particular pollutants considered as harmful became contested political data. Technologists often assume that merely having the technology to measure alone will be a progressive political act, however these cases illustrate that the science or framing of science behind the numbers once the numbers come into view can generate important political debates in society. Barry points to examples such as this to emphasize the importance of technological citizenship in the so-called ‘knowedge economy’. Citizen scientists and experts do not necessarily passively accept the science of the the experts at face value. One of the forces behind the proliferation of data is the steady growth

of sensors. Mobile phones are being developed that have air sensors and the ability for peer-to-peer monitoring (Motorola) and there are some very interesting projects that have emerged in the past year to take advantage of sensor data and visualization tools. Sensorpedia (http://www.sensorpedia.org) is a new platform for sharing and exploring sensor data from around the world. This type of platform is going to be increasingly useful due to sensor data collection projects such as Pachube (http://www.pachube.com) that is “a service that enables you to connect, tag and share real time sensor data from objects, devices, buildings and environments around the world. The key aim is to facilitate interaction between remote environments, both physical and virtual.” Individuals are able to connect their electricity meters, iPhones, Second Life environments, architectural sensor data, building management systems, wearable sensors, etc. and tag and/or connect to other individuals and sensor environments to facilitate interactions between real

and virtual environments. Conceptualized as the YouTube of portals for sharing environmental sensor data, it allows users to embed this data in blogs and websites and connect physical environments. The platform was developed to make it easy to build new applications and services off of the platform. In other words, it is a generative platform.

Some mobile sensor applications being developed at UCLA are also useful for illustrating where this nexus of sensors, data, locative media are going and could become very powerful in the public health arena. The Center for Embedded Network Sensing (CENS, http://research.cens.ucla.edu/) has a research initiative on urban sensing (http://urban.cens.ucla.edu/) and participatory sensing. Here is the description of participatory urban sensing: urban sensing is about people like you—equipped with today’s mobile + web technology—systematically observing, studying, reflecting on, and sharing your unique world. through discovery and connected participation, you can see the world anew. you can tell your local story. you can make change. This is an initiative that resembles many of the recent citizen science programs that are using the mobile computing platform coupled with sensors to empower local citizens to collect and share environmental data and then tell stories that can influence public policy.

The Personal Environmental Impact Report is interesting from the standpoint that it enables users to obtain a better understanding of the local environment on their own bodies as well as obtain an understanding of their impact on the environment. The sensors currently record the following: 1. Smog Exposure (PM 2.5 particulate exposure) 2. Fast food exposure 3. Carbon impact 4. Sensitive Site Impact (PM2.5 particulate impact on sensitive sites such as schools and hospitals) The other important dimension is that it moves beyond the individual and uses the social networking platform Facebook to share data and create a community around the data collection. While many in the health 2.0 world are interested in the ability of individuals to collect data (for example, the Nike + iPod tools for collecting fitness data, http://www.apple.com/ipod/nike/) or Kevin Kelly’s interest in the “Quantified Self” (http://www.kk.org/quantifiedself/2008/09/selftrackers.php), the CENS

projects have a stronger public health orientation via the social networking aspects. Additional projects include: •

CycleSense (http://urban.cens.ucla.edu/projects/cyclesense/): “What if bike commuters could work together as a community to document hazards to biking and make positive changes to their local routes? UCLA’s Center for Embedded Networked Sensing (CENS) is collaborating with Los Angeles bikers to make this vision a reality. We are designing an application that runs on mobile phones that enables bike commuters to log their bike route using GPS and provide geo-tagged annotations (images, text notes) along with automatic sensor data (accelerometer / sound) to infer the roughness and traffic density of the road. Using this information, we plan to create an interface to enable bike commuters to plan their route based on both safety and interest vectors.”

•

DietSense (http://urban.cens.ucla.edu/projects/dietsense/): “DietSense is an online service that allows you to self-monitor your food choices and further request comments from dietary specialists. Mobile phones with CENS participatory sensing platform will let you record photographs of your meal everyday, either automatically or by sensible notifications (based on time of the day or location). In addition to photos, you are encouraged to annotate the photos with voice or text messages providing information not captured by the images (e.g. diet soda as opposed to regular soda). Data (daily photos, timestamp, location via localization techniques or user-reported), and annotations (text/voice) are stored in password-protected accounts on web servers for self-review and specialist assisted analysis. When you log on to your DietSense profile you will see personalized presentation of your dietary habit. Dietary specialists can provide further analysis if you configure your profile to be shared.”

•

Family Dynamics (http://urban.cens.ucla.edu/projects/familydynamics/): “Increasingly, every family member has a mobile phone. Doctors, therapists, and life coaches are recognizing that these phones can help families collect and learn from data about their habits, environment, and interpersonal dynamics. Working with the Semel Institute, we are developing technologies to document key features of a family’s daily interactions (e.g., co-location, family meals, and consistency). Phone-based tools can collect data otherwise invisible to wellness professionals who most commonly rely on family member self-reporting. For example, families and

coaches can learn about behaviors such as consistency of engagement at mealtimes using measures of proximity to one another, as revealed by Bluetooth stumbling [Kotanen03]. Media journals composed of images, video and audio from the phones in combination with GPS and Bluetooth co-location data can provide an evidence-based bridge between individuals, families, and wellness professionals. We are also exploring similar approaches to assess trends in the physical mobility and habits of elders to enhance independent living. The first coaching tool we are prototyping is Andwellness. It is a personal health selfmanagement application for the Android phones that supports flexible geo-spatial, social and activity triggered reminders and ecological momentary assessment.” •

Networked Naturalist (http://urban.cens.ucla.edu/projects/naturalist/): “Engaging the public in ecological research. We are creating a flexible data collection campaigns for the modern, connected citizen scientist. Citizen Science allows individual volunteers or groups to observe, measure, and contribute to scientific environmental studies. How have we made this experience even better? Networked Naturalist is a collection of tools that allows anybody to participate in the growing list of popular citizen scientist projects, all designed to harness the power of people who are not only concerned about their environments but also want to do something about it. On-the-go, flexible data collection schemes, tailored to your busy schedule, allow you to use your cell phone text, email, and picture messages for data collection, as well as sending us email or web forms from your computer. You can see your data and how your data fits in with other people’s data, and see how involved scientists interpret those data — all in real-time.”

•

Additional projects include the Walkability Project (http://urban.cens.ucla.edu/projects/walkability/) , Surya (tracks switch to clean cooking stoves in India, http://urban.cens.ucla.edu/projects/surya/) and Remapping LA (on the collective memory of neighborhoods in LA, http://urban.cens.ucla.edu/projects/remappingla/

Locative media (http://en.wikipedia.org/wiki/Locative_media) is the general term applied to the use of digital media to trigger social interactions in particular places and can facilitate the reframing of space and place. Ben Russell describes locative media as: "Locative media is many things: A new site for old discussions

about the relationship of consciousness to place and other people. A framework within which to actively engage with, critique, and shape a rapid set of technological developments. A context within which to explore new and old models of communication, community and exchange. A name for the ambiguous shape of a rapidly deploying surveillance and control infrastructure."20 The space of locative media is growing rather rapidly through mobile gaming, spacial annotation through augmented reality applications that the latest smartphones enable, geo-tagging and general geo-web applications on mobiles and accessible via laptops and a growing number of leading edge new media artistic examples that are being curated in public spaces to make us think critically about public space. BJ Fogg at Stanford University coined the term “persuasive technology” or “captology” as the study “insights into how computing products — from websites to mobile phone software — can be designed to change what people believe and what they do.” This work examines how computers and other technologies can be designed to change people’s behaviors21:

Source: http://captology.stanford.edu/

The use of SMS or texting as reminders for medications or as nudges in smoking cessation programs would be examples of persuasive technologies. We see other examples in the Prius dashboard that 20

Russell, Ben (2004), "TCM Online Reader Introduction", Transcultural Mapping Online Reader (Locative Media Lab), archived from the original on 2006-07-20, retrieved 2005-11-13 (see in Wikipedia reference cited above)

One can access videos on how this works in practice via http://captology.tv 21

allows drivers to see the impact of their driving behavior on fuel consumption. We can even find more public examples of persuasive technologies in the sustainability field with examples such as the carbon counter that was recently unveiled in New York City22. The counter takes into account the major greenhouse gases and displays in public the levels of gases in the atmosphere in real-time. The goal is to get the public to think about their own contributions to global warming and how they can change these behaviors. There are other examples of public dashboards in public health where cities that have embarked on obesity campaigns are using dashboards to track collective weightloss or BMI changes over time.

Fogg lists several factors below that are important design factors in developing persuasive technologies. http://www.scientificamerican.com/blog/60-secondscience/post.cfm?id=carbon-counter-unveiled-in-new-york-2009-06-18 22

Ian Bogost (2007) has developed a critique of BJ Fogg’s framing of persuasion as running the risk of becoming overly coercive and lacking the reflexivity to examine the framing of problems and finding alternatives. Bogost approaches games through the discipline of rhetoric to force the participant to rethink underlying assumptions about the world or a particular issue. His company persuasivegames.com has produced a number of interesting ‘persuasive games’ that either directly or indirectly touch on important public health issues.

One of the goals of persuasive games is to stimulate critical thinking through the use of rhetoric. In the games above everything from portion size and profits of food companies (Stone City-Cold Stone Creamery) to the contingencies of the geographical spread of pandemic flu (Killer Flu) are scrutinized. Rather than playing to a script where the user or participant is directed toward a predetermined outcome, as in Fogg’s use of persuasive technologies, persuasive games can be useful in generating different framings of problems and critical thinking skills. Augmented Reality: Another relatively new technology that is growing in importance and becoming increasingly mobile as well as utilized in mobile games is augmented reality applications. Augmented reality applications ‘augment’ or merge virtual environments with the actual physical environment. Typically this is through a mobile device, for example, an iPhone. The user can use the video camera in an iPhone 3GS and through an augmented reality application obtain additional virtual information overlaid on the physical environment that the viewer is watching at that precise moment. For example, the Dutch-based company Layar enables the viewer to obtain additional location-based data such as the location of health centers, or one could imagine this with environmental data or other risks in that geographic setting such as accident reports, toxics, crime, etc.

Wikitude is another service that enables the user to obtain wiki-like information about geographic spaces. The augmented reality field is a new area with a great deal of hype about the services at the moment due to the novelty. In actual practice there will be issues around the buffer time to download information, the use of open platforms that enable a rich eco-system of material to develop or be developed by end-users as well. However, as one can see from the other examples presented thus far, there are numerous ways to visualize health issues and data that will change the way we think about how we drive policy changes, engage with communities and these examples should give us some insights into potential ways of constructing collaborative, community platforms for health in the near future. The health technology debates tend to be dominated by discussion of the personal health record (PHR) or electronic medical record (EMR). My point is that the opportunities are far more vast than what the current health technology obsessions may reveal. We’ll now turn to the emerging area of mHealth for a brief discussion of how texting/SMS are being mobilized in many developing country markets and what we might learn from these cases. In the government 2.0 circles there is a growing discussion of the potential for AR in large geospatial projects as a way to channel more contextual information to users in situ. Furthermore, AR could provide another potential application for citizen reporting when users have the ability to upload video from particular contexts almost instantly. One such government 2.0 application is the “Invisible City”.23 AR platforms could be created that cross multiple government agencies into a cohesive information infrastructure such that users would have access to environmental, health services, crime, socio-demographic data about a given neighborhood or location. As with all of the applications, there are potential downsides as this same data could be used to marginalize or redline a neighborhood as well. Our ‘information politics’ will have to co-evolve with the platforms and data as well.

http://www.gov2expo.com/gov2expo2009/public/schedule/detail/103 60 23

mHealth: As the cellphone has rapidly become the primary computing platform for the majority of the world, most of whom live in developing countries we’ve seen a great deal of innovation in a rather short period of time. From mBanking (eg. M-Pesa) and m-payments to m-agriculture and mHealth ventures, there is a rapid rush to develop new services on mobile platforms. The Rockefeller Foundation’s Health System Transformation programmatic area is putting eHealth at the center of health system transformation and mHealth is a major piece of the eHealth eco-system. In early 2009 the UN Foundation, Vodafone and Rockefeller Foundation launched the mHealth Alliance to help catalyze the development of standards, business models and regulatory frameworks for mHealth to take off

Most mobile health interventions at this moment consist of the use of SMS/texting for reminders for drug adherence in complex protocols such as DOTS therapy or with anti-retrovirals for HIV. The mobile platform is also playing an important role in data collection for community health workers in the field. The bulk of existing programs are still in the pilot stage, however there is a great deal of growth in the area without sufficient attention to sustainable business models at the moment. This will likely slow the growth in the long run unless addressed before too long. The best overviews of the mHealth global landscape at the moment are the reports in the list of references from

Vital Wave Consulting (2009a, b). There are many commercial mHealth initiatives in the US such as Be Well Mobile that utilizes a simple color coded user-interface for asthma sufferers (this is just one of their applications). The program demonstrated excellent results in the pilot phase in San Mateo County with low-income, high risk for hospitalization childhood asthma sufferers. Users can input flow meter data and a green border on the user interface indicates that the child’s asthma is currently under control, yellow indicates the need to utilize an inhaler, red indicates that the need for physician intervention. It is important to remember that mHealth is not strictly about the mobile phone. There is a growing array of Bluetooth and wireless devices that can connect to smartphones, PDAs, etc. and will increasingly play a role in the space. In general, we see mHealth applications being used in the health sector for the following functional areas:

A good example of a low-cost mHealth approach that shows the promise of becoming a disruptive innovation in global health is the Frontline Medic SMS based on the work that Ken Banks, the founder of kiwanja.net and Frontline SMS. Frontline Medic is rather simple in terms of technology and the human dimensions of the approach are developing rapidly. Below is a schematic diagram of a typical Frontline Medic SMS instantiation. The savings in gasoline expenditures for community health workers alone are substantial and can reportedly cover much of the costs of the intervention in short order.

Frontline Medic SMS

Some additional mobile interventions that are worth paying attention to in public health would include TxtEagle and the Extraordinaries. Thes are not mHealth interventions per se but involve the use of crowdsourcing and mobiles---this makes them interesting examples for our thinking on open health platforms. TxtEagle (txteagle.com) takes advantage of the fact that companies around the world have millions of minor tasks that could be completed via simple text messages and opens up income generating opportunities to Kenyans with mobiles to complete these tasks and earn credits for the cellphone usage in the process. Keep in mind that low-income Africans are spending a substantial portion of their incomes on cellphone minutes because the mobile is often a gateway toward higher incomes.

The Extraordinaries uses crowdsourcing via mobiles to find “microvolunteers” for small tasks that can be completed via text messages during brief down periods that we may all have during a typical day. From citizen journalism around environmental problems to crowdsourcing location data for defibrillators around the world, the Extraordinaries approach represents an interesting way to cultivate greater civic engagement for public health issues.

Cloud Computing: Cloud computing has become a major focus of attention in the technology and computing world over the past year or so. But the technology has been here for quite a while. Cloud computing by definition is “a style of computing in which dynamically scalable and often virtualized resources are provided as a service over

the Internet. Users need not have knowledge of, expertise in, or control over the technology infrastructure in the "cloud" that supports them.”24 If you have used gmail, hotmail, SalesForce or a wide variety of other commercial software that you access virtually, through the internet you have had an experience with cloud computing. Below is a schematic of some of the players in the cloud computing space:

Often referred to as “Software as a Service” (SaaS), there are also “Platforms as a Service” or “Infrastructure as a Service”. The collaborative platforms mentioned earlier in this report such as the Virtual Alabama platform used to integrate the stakeholders for DHS is an example of how the cloud can be appropriated for more efficient services as well as creating a better infrastructure for collaboration. End users typically do not need a sophisticated knowledge of software to utilize the services and the spread of cloud computing is growing in the international development sector. Intel and Catholic Relief Services have been using a SaaS platform rather successfully for agricultural interventions in the Great Lakes Region of Central Africa. Some of the challenges that cloud computing represents include the tendency of chief information officers in organizations to be wedded to the 1990s internet and block access to many cloud computing sites (as is the case with many social media sites despite the fact that they are being used increasingly for professional reasons). There are also issues around privacy and security, particularly when we are dealing with Personal Health Records when the data are in the cloud and not on an organization’s server. Lascia (2009) points to the emergence of multiple identities that we will have as cloud computing proliferates where we will have professional identities for some services and personal identities for others. There will also be hybrid services (think about the multiple uses of Facebook). 24

see http://en.wikipedia.org/wiki/Cloud_computing

The features that cloud computing will offer to public health are lower barriers to entry for building platforms given the rapid expansion of data that we will have to find ways to manage in the future. The possibilities for even greater collaborative platforms across sectors given the multi-sectoral nature of public health are important as well. The collaborative eco-systems that cloud computing affords will enable more rapid dissemination of best practices and data, and opportunities for “plug and play” platforms that can facilitate integration of a wide range of services. We’ll now turn to one possible scenario for collaborative platforms for public health that build on the PHR but broaden the concept to become a community collaborative platform.

Citizen Health Information Systems: This report has covered a wide range of technology tools and platforms currently available for the public to obtain data, use data to see trends and tell stories about the issues that matter most to them and to collaborate or foster collective action to address the issues. Sakellarides et al (2008) have suggested that in our current era of access to massive amounts of health information and the general needs of the citizen in a knowledge society that we are at the beginning of a transformation to mass customization of health information. The growth of sensors, mobiles, urban computing, etc. will mean that information systems that can store, facilitate sense-making and customize data to our local/personal needs will grow in importance. In the US the concept of the Personal Health Record to store our personal medical records has become a central focus of health IT in recent years. Services such as MicroSoft’s Health Vault as well as Google Health have focused on this type of platform alongside the collaborative effort to create Dossia. Sakellarides et al would like us to think in much broader terms and move beyond the simple notion of merely managing one’s health information but to the creation of tools for health and digital literacy and citizen’s empowerment. Moving beyond the personal health record to community centered collaborative innovation systems is the direction that their work is headed. The idea of citizen health information systems recognizes the growing importance of something that often goes unnoticed by public health practitioners—the emergence of bottom-up health commons. The technologies and platforms mentioned throughout this report are largely being driven by citizens from outside of the public health profession. More data on the environment, access to more biomedical data, mobile data collection, geodata, etc. can be shared as we’ve seen with health 2.0 sites such as PatientsLikeMe.com. The expanded meaning of ‘health’ coming from below and the recognition from health professionals that many of the factors influencing health outcomes are

issues often in the domain of other sectors such as economic development and city planning, transportation, agricultural policies, technology and innovation policies, etc. means that we must find platforms that can bring these other drivers of health outcomes and the data/expertise from these sectors together with health professions. In global health we’re moving from vertically-driven health programs to more diagonally focused health system transformation paradigms. Actually existing health outcomes are the outcomes of the following interactions:

What does this mean for how we think about innovation? It means moving from a manufacturing perspective on innovation that emphasizes the next great thing or piece of technology to social innovations where platforms and technologies form part of an assemblage of social practices, local histories, norms and values and politics and how these can come together in the right form to construct wellbeing and social outcomes. Often this means reconfiguring power and expertise, new organizational forms, democratizing knowledge, new ways of thinking about leadership. Open Health presumes organizational forms that can move beyond command and control systems based solely on professional expertise and that we can create platforms based on new health commons (eg. shared data, participatory budgeting, co-created knowledge, expert patients and

citizen scientists, risk commons/pools). Imagine a movement for health reform that builds on a framing of health as an investment in society, one focused on health and not exclusively medical care, an ethics based on democratized knowledge and trust rather than formalized and abstract bioethics, and outcomes based on broad framings of health rather than absence or presence of disease, and one based on networks (see Sakellarides 2008 and Kickbusch 2008). From within this context Sakellarides asks how we can move from a focus on the Electronic Health Record (HER) focused on individual ownership of data for use in health decision-making to the Electronic Personal Health Information System (ePHIS) framed as a “collaborative innovation system” that promotes health literacy and citizen empowerment. Below is a diagram of the building blocks of the ePHIS. ePHIS Building Blocks

Source: Sakellarides (2008:185)

This vision of a collaborative innovation system founded on the building blocks above has been characterized as follows (ibid 2008:192): •

Networks of personal health information users originating from citizen/patient associations as the core building block

•

The users are involved in the design and implementation of an openly accessed technologic platform that enables customized development of personal health information systems

•

The system enables ways to ensure effective communication and cooperation with local health professionals and services for personal care and in public health

•

Citizen-based consultative and support structures organized at improving health and digital literacy, knowledge translation initiatives and market intelligence on improved health information offers

•

New kinds of expertise such as “health information brokers” are developed to assess content quality and confidentiality

•

Different financing modes for “start-up phases” and “sustainable, scaling up” phases.

One of the value adds of the system is to avoid the embedded dependencies in personal health information systems tethered to existing health care providers or EMRs and the design values of the healthcare system rather than local communities. This could provide a mechanism to develop the systems of trust and social capital that are sorely lacking at the moment in the US health care system. With the social media platforms and tools that I’ve presented in this report we could envisage a collaborative platform that goes well beyond the platform pictured above. Already cities are creating collaborative platforms for catalyzing “collaborative communities”25. The technological tools are here for creating a more open, collaborative form of public health-citizen engagement if we look at the tools below.

Public Health 2.0 Social Media Ecosystem

See the Future Melbourne example here: http://cpd.org.au/article/collaborating-crowd-better-policy-development 25

While the literature of the “social media revolution” continues to expand almost daily, less attention has been given to the political or socio-technological aspects of what could drive the next generation of public health practice. It is clear that new forms of cooperation have emerged and are having important political, social and economic effects. We are obtaining a better understanding of the roles that social networks can play in health outcomes and there is an increasing amount of attention paid to new organizational forms and I have touched on each of these trends. To move forward with the opportunities that these technological and social trends may provide we will have to think about some of the following issues: •

The notion of the ‘digital divide’ has proven to be problematic but we will need to have a clearer understanding of how social inclusion, the rights to the conditions that provide for access to healthcare and good health or wellness are co-evolving with not only social technologies but other more traditional ways of thinking about innovation in health and healthcare such as biotechnology and medical technology

•

What role will the emerging social entrepreneurship/social business field have in public health and what are the limitations of this way of thinking?

•

While open innovation platforms have been used for scientific and technology development in corporate settings we are at the early stages of experimenting with crowdsourcing and open innovation in the social sector. What sort of standards, ethical issues need to be addressed to maximize return on investment while making sure that these platforms serve the interests of marginalized communities?

•

How will our growing knowledge of social networks and government 2.0 impact research and advocacy on social disparities in health outcomes?

•

How can we design platforms and social design systems such that the end users needs are integrated into technology development farther upstream? While many of these platforms evolve as users engage with the platforms and cocreation has become a central motif in the social media world, what are the power relations in actually existing communities and whose voice prevails?

The socio-political dimensions of social media, while being a side bar to the technology discussions for the most part, are going to grow as this field continues to develop. This paper has provided a very basic scan of the field and provided examples that we hope will create some foundation for more robust conversations on social innovation in public health going forward.

Appendix 1: A framework for assessing ROI on social media http://blogs.forrester.com/groundswell/2007/01/new_roi_of_blog.html

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