The Scope, Challenges And Opportunities Of Health Informatics Research And Development

The Scope, Challenges and Opportunities of Health Informatics Research and Development A discussion paper from the UK Faculty of Health Informatics This paper has been prepared by Jean Roberts, PhD, CITP, CEng, MHM and Joint Vice-Chair of the UK Faculty of Health Informatics. It is one of a series of discussion and briefing papers that the UK Faculty of Health Informatics has prepared over the last 2 years on key topics in the Health Informatics field. In this paper Jean summarises some of the challenges, developments and future opportunities for Health Informatics related Research and Development (R&D) in the UK. She sets this in the context of wider European and international developments in the field. Jean also identifies what role the UK Faculty of Health Informatics and its members could play in overcoming the challenges and making the most of the future opportunities. The paper is designed to be used for anyone working in the NHS, Education or the Private Sector interested in contributing to, or in learning about how Health Informatics related R&D can potentially improve patient care. It is not restricted just to members of the UK Faculty of Health Informatics. The Faculty will also be holding a Health Informatics R&D Think-Tank on 26th March 2009 to look at its future role and priorities in this area. For further information on the UK Faculty of Health Informatics go to: http://www.espace.connectingforhealth.nhs.uk/community/nhs-faculty-HI

Scope, Challenges & Opps of HI R&D: 26/03/2009

The Scope, Challenges and Opportunities of Health Informatics Research and Development Jean Roberts, PhD, CITP, CEng, MHM This overview paper addresses the context and significant issues relating to health informatics (HI) research, making observations regarding actions that can be taken to develop and disseminate such research. In some cases work is ongoing and is referenced, other initiatives may be contributory but are not widely known to the health informatics community in general and could benefit from further promotion and coordination. The main areas addressed cover the identity of the domain and the scope of HI research, predominantly in the UK. The challenges to be faced include scoping the core body of knowledge that HI encompasses, positioning research to capitalize on rapidly changing technologies, methods to stimulate further research and to recognise and grow the workforce, nurturing opportunities whilst maintaining knowledge of the past. The paper touches on potential for interworking, data sharing and interoperability whilst not ignoring widely held concerns about the needs for sensitive handling of health data. The paper is intended as a marker to raise awareness of issues and opportunities and to prompt debate. DOMAIN IDENTITY An over-arching challenge to Health Informatics (HI) is to generate a brand identity that is acceptable and acknowledged across the health domain and as a legitimate discipline. Significant steps have been taken that demonstrate the use of the term, such as: • • • • • • •

Activity across the home countries to develop a career framework for operational and research staff in HI, utilizing national occupational standards and links to certification of competency Establishment of Health Informatics Services within the NHS Introduction of a Health Informatics Forum within the British Computer Society Launching of the UK Council for Health Informatics Professions (UKCHIP) to certify registrants as ‘fit to practice’ as health informaticians Increasing numbers of academic courses from foundation degree to masters level covering HI themes Recognition of HI by the Science Council as a health science Creation of a body of knowledge for HI, accepted world-wide under the aegis of the International Medical Informatics Association (IMIA) 2

Scope, Challenges & Opps of HI R&D: 26/03/2009

As Kwankam of the World Health Organisation (2007) said ‘Perhaps it is time to replace "medical" with "health" in the name of the [International Medical Informatics Association (IMIA)] society….. I think we are more likely to get the attention of those we wish to influence - policy and decision makers - if they know that we dealing with health and not just medicine’. This applies inclusively to operational practice and research. There are many other instances, projects, publications, congresses and initiatives that contribute to domain maturity and recognition. The scope of the domain will remain volatile and never plateau. New technologies, emerging health demands, widening specialisation at both micro and macro (genomic and population) levels, and involvement of citizens directly in their care will always serve to refresh the HI domain. It has to be said that there is still considerable work to be done internationally with regard to harmonizing the scope of related HI terms. SCOPE OF HI RESEARCH The discipline of HI can in itself be researched and also the tools and techniques that constitute health informatics can be deployed to facilitate research itself in related areas. Health informatics encompasses all the areas where technology and information contribute to the support of health care delivery, management, planning and research. Related to the core areas are themes such as ethics, attitudes learning, coping with third party interactions – all ‘into and utilizing’ health informatics. Other research has been identified into content provision, generating an evidence base and knowledge management. To date we can frequently identify an area of HI research by the named individual(s) that have been actively involved, but as the domain scale increases this will not be possible without reference to profiles of previous work and research interests. New entrants to the HI research field will need to break into previously closed circles if their proposed contributions are to be considered equally against established ‘names’ and institutions. In many mature academic disciplines, traditionally, research ‘proper’ starts at an academic doctorate level. In HI there are an increasing number of work-place focused Masters level applied studies that can contribute to the body of knowledge in this emerging domain, particularly for the benefit of operational effectiveness, efficiency and efficacy. The existing boundary between audits of practice and formal research needs to be removed as the ethical guidance applied previously to research only will additionally apply to all ‘named subject’ content however collected and used.

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There is frequently a potential for exploitation from research activities, which is not always carried through either by the research organization(s) or any third party. The European Commission Research Frameworks have for many years required every funded project to, at a minimum, indicate potential exploitation paths and frequently incorporate actions to position their deliverables for exploitation and to translate their research into practice. It has been possible to see a reluctance to involve operational care organizations in traditional research; seemingly thought by some to reduce the academic cache of the research. Incorporation of operational partners in research teams can verify projected out-turns from the application of findings; in addition to providing a practical environment for action research, a real problem to be researched or an element of realism that is sometimes absent from pure academic research. In addition to research into informatics to support clinical themes, we must not forget that the health domain contains some very large business entities and health informatics research can also involve and support the processes that health service managers are involved in. CHALLENGES TO HEALTH INFORMATICS RESEARCH There are many challenges to be faced by HI researchers (but not exclusively or always present in each project) including – • • • • • • • •

A plethora of national or international funders with differing agendas, structural requirements for submission of bids and criteria for evaluation (Roberts, 2008) Limited numbers of research-oriented people in the workforce A requirement to involve many disciplines in the research, capitalizing and coping with variety of perspectives, priorities and cultures The volatility, similarities and differences of the health care environment in the home countries and across Europe and world-wide within which any HI research has to be carried The rapidly changing technological infrastructure, emerging tools and developing techniques that are available to, and developed by, researchers A common perception that HI is just an application of technology rather than a distinct innovative domain in itself A perceived ‘stigma’ of the legitimacy and value of work-place or secondary research Complexity in facilitating multi-disciplinary (and cross-sectoral) working regardless (or in spite) of inconsistencies in the Codes of Practice or Conduct of the professions involved

In addition, because of the complexity of the research landscape, it is difficult to

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see the total picture of which topics are being addressed by which teams, and are at what stages and have produced what deliverables and publications refer. Kwankam again gives some parameters that confirm the exponential growth of material in our area - ‘In the area of health research, for instance, the sheer volume of new information is enough to stretch even ICT-assisted decision making systems. On an average day, there are 55 new clinical trials, 1260 articles are indexed in MEDLINE, and 5000 papers are published in the biomedical sciences. In 2002, the world produced 5 exabytes (PITAC, 2003) of new information, 90% of it on magnetic media (and only 0.01% on paper), and the annual growth rate is 30% (Liman and Varian 2003).’ Research projects can produce deliverables which are open and public or on controlled circulation amongst the project participants. Knowledge of all these factors can help other research teams that are wishing to be considered for future work to set the context for their bids; in synergy or following on from the outcome stage of previous work. The sections below identify some of the developments that may help address some of the greatest HI Research challenges that have been identified: Workforce capacity and capability A recent Europe4Research newsletter stated that ‘Europe faces increasing global competition for the best and brightest research talents’, and added that there are ‘disincentives for young people to go into research and for researchers to be mobile’ [across the European Research Area]. These are grand statements, but the detailed commitments for 2010 for systematically open recruitment to research bodies, portability of grants to stimulate mobility and enhanced training for researchers can only increase the pool of research-competent professionals. Using these principles should help Europe to develop as a world-class location for research and facilitate economic exploitation of research results. In our domain, increasing recognition of the contribution of research and the value of research competence can drive up quality and encourage involvement of frontline health services organizations to partner in research initiatives. The HI Career Framework ( http://www.wales.nhs.uk/ihc/page.cfm?pid=30266 ) will describe necessary competences for researchers that will facilitate both progression and migration from other HI areas into and to contribute to research. Expression in terms of National Occupational Standards will facilitate external researchers clearly understanding what they need to know about the specific domain. This work is in synergy with Medical Research Council work (Dukes, October 2008) to identify the research leaders of the future and the Science Council study into how best to engage and develop future scientists, to provide a skilled and flexible workforce to resource health-related research and health services.

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Harnessing the core body of knowledge There is much debate (BCS HINOW, March 2007) in the UK and internationally with regard to what HI encompasses. There are also variations in use of terms and synonyms between countries; for example Germany uses ‘medical informatics’ as its top level term whereas the UK uses ‘health informatics’ to describe similar scope. Work lead by the Centre for HI Research and Development (CHIRAD) team, since 2005, has resulted in a mapping of the HI discipline that is recognised by the International Medical Informatics Association and contains over 450 terms associated with the HI domain specifically. In order to make research as effective as possible, the development of additional explicit meta-tags, based on the IMIA cognitive map could increase the effectiveness of searching for relevant published material and increase world-wide access. Keeping up with technology There are many eclectic technological environments in which research can be carried out, qualified by various parameters including the ‘proprietary / open source’ debate. When a project involves multiple participants they may be entering and leaving at various stages, responsible for specific elements, rather like specialist teams within an American football squad. The environment in which each works may be constrained by their range of projects or by their rate of adoption of generic technical advancements which are also frequent. In addition, care must be taken that the research deliverables produced as shareable or publically available are in practice as widely accessible and technologically ‘ubiquitous’ as feasible whilst still retaining integrity and protection from unauthorized amendment / annotation and risk to patient safety. Doupi and colleagues from STAKES Unit for eHealth, Finland, as part of the European ERA project identified ‘semantic interoperability of electronic patient records’ as a focus during the MIE2008 meeting in Gothenburg and this priority was also in evidence at the World of Health IT in Copenhagen in (November 2008. This term encompasses both robust consistent message passing and presentation of data without corruption to the meaning. When patient records are shared it is important to retain appropriate context whether the acquiring system uses the data in identifiable or anonymised form. Technology can offer great potential for sharing and collaborative working; however, recent incidents involving loss of data, unauthorised access to data and use without consent have created public and professional concern. Considerable effort needs to be made to reassure the public, subjects of research, and partners that systems are robust and that data will be handled sensitively and securely, in line with agreed purposes. The concept of an ‘honest broker’ and ‘safe haven’ for data ((NHS CFH, June 2008) to be used by the research community are laudable in essence but there is a need for more practical discussion with practicing clinicians, particularly GPs who have strong concerns 6

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about patient consent; similarly threats from record linkage and pseudonomisation need further investigation. As the UK Clinical Research Collaboration R&D Advisory Group to [NHS CFH asserts (UKCRC, 2007) ‘The UK can significantly enhance its clinical research capability by using, strictly within the bounds of patient confidentiality, the electronic patient data that the UK’s National Programmes for IT in the NHS have the potential to allow’. Realising this claim will require considerable investment in reassurance and promotion. The videocast "The NIH Biomedical Translational Research Information System (BTRIS)" Video archive by Jim Cimino MD, Chief, Laboratory for Informatics Development, NIH confirms that data sharing is a problem not unknown to others in HI. Addressing concerns as above is a pervasive challenge that can benefit from wide dissemination of preparatory investigations and derived guidance, rather than ‘re-invention of the wheel’ as an initial stage of each project. Publishing The range of types of publication media / sources for research findings are also wide and decisions about where to submit research papers to can be quite complex. In addition, there are challenges to finding and accessing sources, some of which are ‘on subscription’. A driver in a number of countries is the value to academic authors, from formal citation – for example the proposed changes to the Universities Research Assessment Exercise will hopefully remove the anomaly that a commentary in the form of a letter to certain prestigious journals can gain more impact than a fully structured scientific paper in a widely read ‘trade’ publication. The report by de Lusignan (2008) highlights many of the issues faced in deciding where to submit scientific papers in our domain. There is limited generic consistency in the keywords that can scope particular searches other than the medical headings (MeSH terms) available for Medline citation; and searching is made more complex as basic terms like ‘informatics/ICT/IM&T/IT’, ‘classification/ coding / terminology’, and even ‘clinical /medical’ can be deployed differently depending on national, institutional or discipline-specific origins. Initiatives in open publishing, such as that linked to US National Library of Medicine grants (http://grants.nih.gov/grants/guide/pa-files/PA-06-094.html ) and the Medical Research Council’s guidance on open and unrestricted access to published research (MRC, 2006) are to be welcomed. Open access publication vehicles like Biomed Central (http://www.biomedcentral.com/) are also doing much to increase the dissemination of peer-reviewed research.

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STIMULATION OF FUTURE RESEARCH As health informatics is still an emerging discipline researchers are applying both formal and informal ways to carry out their investigations. This is in part due to the legitimate involvement of a wide range of stakeholders - operational partners, requirements for top level trend analysis in addition to detailed surveys, and pragmatic perspectives gained from community consultation, field audits and expert subjective commentary. Formal grounding of research in a comprehensive base of evidence can only improve as more publication takes place, and existing reference sources are linked together through a portal. Previously European Union law had necessitated ‘creative’ bids for HI research funding at a multi-national level. Article 129 (now renumbered as Article 152) (http://europa.eu/scadplus/leg/en/lvb/a16000.htm) states that health was a national not collective responsibility. Research in informatics could therefore be demonstrated –and funded- in a health context not as HI specifically. That said, the deliverables from EU funding are extensive, impressive and many are leading edge (http://europa.eu.int/information_society/activities/health/index_en.htm ). The current high level target areas for EU funding in 2009 from the ICT for Health Unit under the Framework 7 programme are: • • •

Personalization of Healthcare (63m euros) Patient safety – avoiding medical errors (30m euros) Predictive Medicine – Virtual Human (modeling diseases)(68m euros)

/simulation

of

A recent Thought Leadership presentation by Iakovidis (WoHIT, 2008) outlined convincing evidence of benefits from eHealth (note: one of the elements within HI as defined in the UK). Explicit evidence of research outputs are described on http://cordis.europa.eu/ist/heath/index_en.htm. Many UK partners are involved in ongoing projects in HI, but as indicated elsewhere this is only one reference source in the many that make up a holistic picture of UK HI research. In UK HI, the National Library of Health (NeLH) could give summary guidance to generate a clearer understanding of research protocols so that operational practitioners‘ input could be included more rapidly, meeting the same standards as traditionally expected from established research activists. We do see increasing numbers of meta-analyses (such as the IMIA Body of Knowledge) and, encouragingly, multi-national development of standards specifications (for example the EuroREC initiative) and significant literature reviews (Pagliari et al). These can only report on the available material which will, over time, increase in volume, range and quality. If the Office for Strategic Coordination of Research (OSCHR, reporting to the Treasury) and its constituent bodies – the National Institute of Health Research and the Medical Research Council recognize HI per se then its identity and the volume and quality of

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focused research outputs will increase. The UK Faculty of HI http://www.espace.connectingforhealth.nhs.uk/community/nhs-faculty-HI is already active in encouraging dissemination across the community – albeit only through its membership in operational, academic and commercial sources. Preserving the legacy The BCS publication: “Health Computing: Recollections and reflections” (Hayes and Barnett, 2008) recognizes that the domain assumed an initial identity in the early 1960s. Due to fragmentation of developments and rolling changes to the strategic environment, much previous evaluation material and many project deliverables have been lost; although the UK National Health Informatics Collection (http://www.uclan.ac.uk/library/usersupport/lrs/collections/index.htm ) is building a body of formally referenced artifacts through donations from retiring health informaticians and project closures that are available to shed some light on HI history. Funding for digitization of such material will facilitate its accessibility to interested parties world-wide over time. The US National Library of Medicine also collects historic material and we hope to link up with their collection digitally in the future. It is hoped that the principle of retaining a historic context in which to explain development paths and contemporary priorities will pervade both the UK HI community and that of European and international strategic initiatives over time, funding willing. FUTURE OPPORTUNITIES A greater awareness of who is doing what, where and when can generate both a clearer landscape for targeted research and informed development, which will realize benefits to the health domain and UK PLC. Opportunities are outlined here but will require further consideration and prioritization; but not all of the opportunities can realistically be developed by the UK Faculty of HI but it is appropriate for the Faculty to act as a catalyst at this stage. Role for the UK Faculty of HI At present the UK Faculty of HI acts in a predominantly knowledge exchange facilitation manner, but there is a wider agenda to be addressed if HI is to generate a distinct identity and develop a collective research contribution. The Faculty should pursue the role, as described in its recent review (Roodhouse, 2008), to bring together information and guidance about publication sources, research processes (Department of Health, 2005; Scottish Office, 2000), projects, participants and progress; synergistically with the BCS HI Forum (body of knowledge), UKCHIP (professional registration) and the National HI Collection (artifacts). In addition HI research should be set in the context of health research

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(OSCHR) and with reference to other research stakeholders in the technology domain, for example through: • •

The Science and Technology Facilities Council www.scitech.ac.uk/ NESTA: National Endowment for Science, Technology and the Arts in the UK www.nesta.org.uk/about-us

•

Support bodies such as http://www.businesslink.gov.uk/

With the above information available in a cohesive format and to a wider community, it will be more feasible to gain additional value from complementary primary research on similar themes and to harness primary data for secondary uses (subject to regulation with regards to sensitive data handling). Enhanced open access to all relevant aspects of a research environment will facilitate: • • • • • • •

Efficient exploration of new collaborations and involvement of appropriate researchers with previous experience when funding bids and project outlines are being developed Approaches to appropriate ‘named researchers’ and research establishments for collaborative activity Entry of new research (organisations) on a more level playing field than is currently the case; giving scope for innovative developments involving emerging players Improved opportunities for others to access material, explore secondary use, comment, critique, complement and challenge findings Additional involvement from operational locations, adding real life experiences and an additional dimension to plans and outcomes Identification of partnership potential to bring about sequential, comparative and longitudinal studies on a cost-effective basis Encouragement (or as with the US National Library of Medicine funding guidance ‘a mandate’) for explicit outputs from previous (publically-funded) research to be openly available and usable will reduce the amount of repetition, allowing scarce resources to be better deployed on ‘downstream’ development

Income generation or cost-effectiveness from research There is a rich seam of data that is personally-identifiable or business sensitive within operational health care bodies that, subject to very stringent legislative and ethical regulation and / or subject consent, can be effectively utilized in research. In particular, pharmaceutical and epidemiological research relies on large datasets that are very time-consuming and costly to generate. There may be opportunities to build on the consent model used by UK BioBank in order to release existing data and future large scale datasets for research use, if and only 10

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if satisfactory guidance and regulatory compliance at local, national and international levels is established. If robust scheme(s) for operation at population and local community levels can be developed there may be a potential to offset the costs of future innovation against sensitive data re-versioning. PERSONAL REFLECTIONS ON FINDINGS There are a relatively small number of people and places that are already wellrecognised for research in and utilizing health informatics. There is a huge pool of latent knowledge and experience that has not yet been tapped. Whilst it is rarely effective for positive discrimination to awake all the potential participants, such discrimination could act as a catalyst, encouraging new players into the field. The mix of (current and future) members of the UK Faculty of HI can to work together in research bids; creating synergy through a willingness to collaborate. Investment in effective communication of deliverables from multi-organisational activities will help to create a climate where collective operational, academic and commercial participation is the norm. If main stream activity is not inclusive of research we run the risk of a black hole opening up behind today’s organisational practice and solutions that will be difficult to bridge. Healthcare delivery, management and development bodies must not jeopardise tomorrow’s patient care by not contributing to research that will enhance their future ways of working. Where sharing research and its findings extend past national boundaries; risks are reduced, development moves faster and benefits are multiplied. Jean Roberts – January 2009 REFERENCES: US Presidential Information Advisory Committee (PITAC) Report to the President (2001) Lyman, Peter and Hal R. Varian, "How Much Information", 2000, 2003 http://www.sims.berkeley.edu/research/projects/how-much-info-2003/ Biomed Central http://www.biomedcentral.com/ (accessed November 2008) de Lusignan S, and Editorial Board. Editor's report to the British Computer Society (BCS PHCSG) Annual General Meeting. Informatics in Primary Care 16(3). Accepted for publication. Department of Health, Research Governance Framework for Health and Social Care: Second Edition, (2005) Doupi P, Hypponen H, and Hamalainen P, Health Policy and Deployment in Europe: Implications for Research ERA project, (2007) Dukes P, Medical Research Council, Research Training & Career Trajectories and Opportunities, presentation to Science Council, Scientists in Health meeting (October 2008)

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Hayes G, Barnett D, Health Computing: Recollections and reflections, BCS (2008) Iakovidis I, eHealth Deployment in EU: Role of Convincing Evidence of Benefits, World of Health IT (November 2008) Kwankam, Y Keynote: eHealth contribution to sustainable health systems: information and knowledge are the key, Medinfo2007, Brisbane (August 2007) Medical Research Council, Guidance on open an unrestricted access to published research, http://www.mrc.ac.uk/ (accessed October 2008) NHS Connecting for Health, Research Capability Programme: Background, Vision Overview and Glossary (June 2008) Roberts J, Research Issues as they may affect Health Informatics: A Discussion Paper, for NHS HI Faculty, www.espace.connectingforhealth.nhs.uk (May 2008) US National Library of Medicine, Funding Grants guidance, http://www.nlm.nih.gov/ep/GrantPubs.html (accessed November 2008) Scottish Office, Research Governance Framework for Health and Community Care (2001) UK Clinical Research Collaboration, UKCRC R&D Advisory Group for Connecting for Health: The Report of the Research Simulations (June 2007) www.bcshif.org BCS HINOW journal (March 2007), accessed October 2008

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