Online Health Care Gets Personal

CarePages

SM

Online Healthcare Gets Personal

Health 2.0 and the Healing Power of Supportive Communities Dr. Sharon Langshur Co-Founder CarePages 2008

Introduction

From Control to Connections to Community No matter what their physical hardships or challenges, people who suddenly must deal with a life-changing health condition often have similar and familiar reactions. First, they feel like they’re losing control of their lives. And second, they don’t want to be alone.

This paper will examine one aspect of Health 2.0 that has only recently begun to receive widespread attention: The increasing use of online resources, particularly social networks and communities, as a way to seek, give and receive emotional support.

The use of the Internet for health purposes is evolving in a way that mirrors these elemental needs. Since the first step towards control is knowledge, many individuals begin their health journey with an Internet search for everything from symptoms, diseases and doctors to preventive practices, medications and treatment options. According to a recent iCrossing survey, some 59 percent of adults use online resources to obtain health and wellness information, compared to 55 percent who go to their doctors and 29 percent who talk to relatives, friends or co-workers.

The paper will address such questions as:

Yet anyone who has cared for someone with health problems knows it takes more than medicine to help people heal. (The word “disease” literally means “without ease,” which tacitly acknowledges the psychological and emotional distress of illness.) In the last several years, the transformation of the Internet, commonly known as Web 2.0, has opened the door to exciting new possibilities for facilitating “wholeperson care.” Web 2.0 refers to the use of technology and Web design for the purpose of enhancing information sharing and collaboration among users. Practically speaking, it means that everyday people, not just the techies, can create content online (familiar examples of Web 2.0 include blogs and social networking sites such as Facebook and MySpace). The availability of these social media applications has limitless potential to empower, engage and educate patients, caregivers and providers. Tens of millions of people are already taking advantage of this growing trend, which Jane Sarasohn-Kahn of THINK-Health has termed ‘Health 2.0’ and defines as, “the use of social software and its ability to promote collaboration between patients, their caregivers, medical professionals and other stakeholders in health.”

1. Introduction: From Control to Connections to Community

• Is there scientific evidence to indicate emotional support promotes health and well-being? • How are online health social networks and communities evolving to meet emotional needs? • How has their use affected patients and their families and friends? • What role will online emotional support play in healthcare’s future?

One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient.” Frances Weld Peabody The Care of the Patient For people facing a health crisis or a chronic, debilitating condition, Health 2.0 is not just about innovative technology – although technical advances such as the expansion of broadband have made Internet applications easier to access and use. Technology, however, is only an enabling tool to help these Health 2.0 individuals get what they really want – the opportunity to connect with others who will help them feel better physically, emotionally, mentally and/or spiritually. The purpose of this paper is not only to show how the Internet is evolving to meet these needs, but also to share the voices and stories of those who are benefiting from these changes. In a very real sense, Health 2.0 is the recognition that, while the road to good health is a uniquely personal experience, people prefer to make these journeys in the company of others.

Health Benefits of Emotional Support “When it seems that our sorrow is too great to be borne, let us think of the great family of the heavy-hearted into which our grief has given us entrance, and inevitably, we will feel about us, their arms and their understanding.” Helen Keller

Humans are inherently social, and our need to connect with others only intensifies when these bonds rupture, which often happens during a health crisis. Mired in the day-to-day demands of managing and coping with health-related problems, many of us begin to feel neglected, alone and overwhelmed. These headlines from a series of New York Times articles capture the anxiety and fears of countless hospital patients who suddenly find themselves cut off from their families and friends: Awash in Information, Patients Face a Lonely, Uncertain Road In the Hospital, a Degrading Shift from Person to Patient Sick and Scared, and Waiting, Waiting, Waiting Alone in Illness, Seeking Steady Arm to Lean On Yet most of us also have felt lifted by an encouraging word, an empathetic gesture or just the mere presence of a kind-hearted soul. In other words, we know from experience that emotional support can make us feel better. (For our purposes, we define social/emotional support as the presence – real or virtual – of people who let one another know that they are cared about, valued and loved.) Although the health benefits of emotional support have not been widely studied, recent scientific research provides evidence of its positive influence.

2. Health Benefits of Emotional Support

For example, in two separate studies published in the American Journal of Cardiology, the findings indicate that “the lack of social support is associated with increased morbidity and mortality in ischemic heart disease.” In addition, the Joint Commission, an independent, not-for-profit organization that accredits and certifies more than 15,000 healthcare organizations, has acknowledged spiritual and emotional well-being as aspects of patient care. In a review of the literature on patients’ emotional and spiritual needs published in the Joint Commission’s Journal on Quality and Safety, the authors concluded that: • Poor psychological and emotional health damages physical health outcomes. • Conversely, emotional well-being has been shown to be predictive of survival and functional independence among older patients. • Anxiety, depression and poor outcomes are common among patients with unmet emotional needs. Another study published in the Journal of Clinical Oncology (December 2007) indicates physicians might be able to promote healing simply by showing more empathy to their patients. As reported in the New York Times, this research: “…supports the idea that a few kind words from an oncologist—what used to be called bedside manner— can go a long way toward helping people with cancer understand their treatment, stick with it, cope better and maybe even fare better medically. ‘It is absolutely the role of the oncologist to provide a bit of emotional support,’ said Dr. James A. Tulsky, director of the Center for Palliative Care at Duke University Medical Center.”

Size Matters Research also indicates the size of a person’s social network can affect how pain is experienced and the duration of the healing process. A recent study in The Journal of the American College of Surgeons found that the 20 percent of patients with the smallest social networks reported almost twice as much post-operative

pain intensity as the 20 percent with the largest, and that smaller social networks were associated with longer hospital stays. The study also suggested a strong association between social network size and pre-operative pain levels, which may have contributed to the faster post-operative recoveries. In a Nielsen Online study, commissioned by CarePages, both patients and their caregivers demonstrated this link between community and healing. The study focused specifically on emotional support at Internet health sites and analyzed consumer-created content. More than 10 percent of discussions are dedicated to messages of appreciation, gratitude and the positive impact of receiving online emotional support. In approximately 13 percent of messages analyzed, the writer indicated that they feel they’re part of a community. Interestingly, twothirds of emotional support discussions are about giving support to others, which seems to support the widely held belief that health challenges bring out the best in people. Such findings confirm what people know to be true: emotional support is beneficial to our health and general sense of well-being. A 2007 survey of nearly 900 caregivers and visitors to CarePages.com, whose mission is to ensure that no one faces a health challenge alone, found that 99 percent believed that emotional support can have a positive effect on the healing process. When hardships strike, whether they’re our own or those of a loved one, we instinctively seek comfort from each other. Today, as a result of technological advances and social trends, people are taking advantage of new opportunities to experience the transformative healing power of these life-affirming human connections on the Internet.

3. Health Benefits of Emotional Support

“I was sitting on the BarcaLounger at the hospital outpatient clinic with my chemo dripping, nauseous and wanting to puke. I kept telling myself, ‘Remember, you are strong, you can do this.’ Then I looked across the room and saw this woman about my age. Another woman, I think it may have been her mother, was holding her hand and had a Thermos for her to drink from. That was when I felt my own loneliness like a blow.” A 55-year-old female cancer patient quoted in the book, We Carry Each Other

Coming Together:

The Internet, Healthcare and Social Networks Everyone knows that consumers rely on the Internet for all kinds of health-related information about symptoms, treatments, doctors, costs, medications, hospitals, etc. In fact, healthcare topics rank number one in online searches and traffic to healthcare information sites has grown 21 percent in the past year – more than four times the growth rate of the total U.S. Internet population, according to ComScore data (September 2008). It’s also common knowledge that social media (an umbrella term for various activities that integrate technology, social interaction and user-generated content) and social networks (i.e., online communities of people with shared interests) have become wildly popular, particularly among adolescents and young adults who spend countless hours on Facebook, MySpace, Twitter and other similar sites. What few realize, however, is that these two trends have begun to converge, as social media is rapidly becoming an integral part of the healthcare experience for millions of Americans. According to the aforementioned iCrossing report, “How America Searches: Health and Wellness,” search engines are typically the gateway for online health information. However, searchers are not just looking for hard data and authoritative opinions – they’re looking for each other, for “people like me” who have first-hand experience with whatever health challenges they face. Consider these report findings: • 75% of online health searchers say one reason they go online is to seek other consumers to exchange information or get support. • 24% indicated that they turn to online content created by others such as themselves or to online social communities where they can interact with these individuals to share experiences about a disease or condition. • 34% use social media resources to delve into health related topics.

4. Coming Together: The Internet, Healthcare and Social Networks

The report also notes that “the experiences of fellow consumers are a valuable resource when making personal health decisions.” This is further confirmed by recent research from the Pew Foundation, which found that 39 percent of patients use online support groups to discuss medications or treatments with other patients. Without question, more people are getting information about their healthcare choices through online health and disease-specific groups, forums, message boards and communities.

A Sense of Belonging Making smart decisions is just one of the many paving stones on the pathway to better health outcomes. Today, many people with health challenges (as well as those who care for them) also are using the Internet to seek, give or receive emotional support. In 2008, the CarePages-commissioned research by Nielsen Online showed that 14 percent of healthcare discussions online are related to emotional support, which generally occurs in groups and communities. Patients with life-changing diseases are more than three times more likely to receive emotional support than those with lifestyle management diseases, which may indicate that people with chronic conditions are unaware of the opportunities to take advantage of online communities. The Nielsen research also showed that patients are five times more likely than caregivers to participate in online health conversations. However, caregivers who initially come online to find ways of taking care of their loved ones often remain active within forums to cope with their situations and meet others with similar experiences and challenges. Other recent studies have yielded comparable results. For example, a 2007 JupiterResearch study of Internet health information seekers found that 17 percent use the Internet to get emotional support, and 8 percent use it to feel like “I belong in a group or community.” A third study (Forrester Research) of online consumers who have been diagnosed with an illness or medical condition, revealed that more than one in five had used a community-based support group in the past 12 months.

Also significant is the fact that people who participate in such groups are likely to stay involved and contribute. The Pew Internet Project, for example, found that some 57% of recently challenged or diagnosed patients who found information online said they felt eager to share their new health or medical knowledge with others. These activities implicitly corroborate other evidence of the health benefits of social networks. Nearly 30 years ago, a large-scale California study found that people with the lowest levels of social contact had mortality rates two to four and a half times greater than those with strong social networks. More recently, studies have found that a stable, supportive social network improves health outcomes for a wide range of conditions from heart failure to post-partum depression, and can have a palliative effect on pre-operative pain and anxiety. Researchers have only begun to measure the everwidening scope of Health 2.0 and its role as a channel for emotional support. Yet numbers and statistics cannot convey what all this means to a young pregnant woman who discovers her unborn child has a rare disease. Or to an Ohio couple trying to cope with the death of their 27-year-old daughter. To fully understand the personal implications of Health 2.0, it helps to listen to what real people have to say about their experiences.

“Patients want to be cared for in a setting that not only is welcoming, but also provides them with the assurance that their needs–clinical, social, emotional and spiritual–are being met, and that they are being listened to…hospitals should work hard to ensure that the communication between the medical team and patients and their families is two-way... we have put in place a Webbased service called CarePages that allows families to communicate the status of a patient’s condition to loved ones across the town or around the globe.”

Paul Kronenberg, President and CEO of Crouse Hospital in Syracuse, NY

5. Coming Together: The Internet, Healthcare and Social Networks

Finding Solace in Cyberspace Voices and Stories from the Real World Many people who have spent weeks, months or years bedridden in a hospital or debilitated by a chronic disease will tell you the same thing: the worst thing about their ordeals is not the pain or boredom – it’s feeling utterly isolated and alone. According to a Picker Institute survey, when more than 23,000 patients were asked about problems encountered during their hospital stays, 23 percent cited insufficient involvement of family and friends. Even though they are not physically incapacitated, the family members and close friends who care for these individuals can feel just as disconnected from their social circles. For example, some 13 million Baby Boomers today must do double-duty as caregivers for their parents and own families, plus meet the demands of their work. With all that is required to handle these obligations, it’s no wonder that they lose touch with their world – or with any sense of what they once considered to be their normal, everyday lives. As we’ve seen, the Internet can be an invaluable resource for re-establishing these vital connections. This was the idea behind CarePages.com, a free website dedicated to ensuring that no one has to face a health challenge alone. More than 3.5 million CarePages.com members and visitors use personal, private Web pages to find others, express support and ask for help from the larger community. The site serves the needs of both patients and their personal caregivers, who often are so focused on others that they do not acknowledge or address their own unmet emotional needs. CarePages.com inspires and guides participants to give each other emotional support in a group setting, bringing them together to share their stories and concerns, their hopes and triumphs. Members on CarePages have varied social, cultural, educational and economic backgrounds. They are patients and caregivers, young and old, rich and poor. Some have chronic diseases; others are injured or recuperating from major surgeries. Although each has had uniquely personal and intimate health-related experiences, all have turned to the Internet to help them cope and persevere. Their voices and stories best

6. Finding Solace in Cyberspace: Voices and Stories from the Real World

illustrate the real-world impact of online health social networks and their potential to promote healing, wellbeing and better outcomes.

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” Dr. Elisabeth Kubler Ross

Sarah Doyle, Mother of a Child Born With a Rare Disease When she was 19 weeks pregnant, Sarah Doyle received chilling news from her doctor: her unborn son, Aidan, had a rare disorder called Giant Omphaloceles, which meant he would be born with some of his abdominal organs (e.g., liver and intestine) outside of the body. In March 2007, one month before her scheduled C-section, she started her CarePages website for Aidan. “Before I knew it the site had 100 visitors and it’s now has nearly 400, and we’ve been overwhelmed by their kindness, encouragement and prayers. I also found other mothers of children with Omphaloceles in the CarePages directory. My goal is to use CarePages and our e-mail support group, Mothers of Omphaloceles (MOO), to help other parents understand their options and realize they’re not alone.” After spending the first 11 months of his life in a hospital intensive care unit, Aidan was finally allowed to go home with his parents in March, 2008. Although he’s still on a ventilator, Sarah’s June 30, 2008 CarePages update reports that he’s continuing to do well.

“We’ve received such a tremendous outpouring of support from family, friends and some amazing people we’ve met only on CarePages. It’s also been therapeutic to tell our story, and our entries provide a valuable record of all his medications and treatments. I stay in touch with parents of Omphaloceles through CarePages and MOO. I’m inspired by Aidan and this whole experience to give back to others.”

Jamie Woodward, Mother of Soldier Ben Hardgrove Less than 12 hours after arriving stateside following his second consecutive tour of duty in Iraq, 21-year-old Ben Hardgrove, a Lance Corporal in the U.S. Marine Corps, was struck by a vehicle and suffered a catastrophic brain injury. In the first post on Ben’s CarePages website (which has since had more than 17,000 visitors), his mother, Jamie Woodward, wrote “I want to be able to use what has happened to Ben in a positive way.” Here are some of her other updates during an ordeal that has gone on for more than two years. “We told him about coming home soon and how he needs to keep working hard, even when he thinks he can’t. He continues to type the word A-L-I-V-E.” “Ben is sick again…Please pray for him and our entire family, other health issues have been diagnosed within my family, that are potentially serious...Emotionally we are drained. I have been staying as close to Ben as possible, but I don’t know how much longer I will be able to stay near him.” “Ben is doing great. Although weakened, he is on the road to recovery from this latest setback…my deepest appreciation to all of you for supporting Ben.”

Tom and Kim Cruze and their friend, Joana deBelkadi After their daughter Beth was diagnosed with late-stage Ewing’s Sarcoma in June, 2006, Tom and Kim Cruze opened a CarePages website, where Beth befriended Joana deBelkadi, who had colorectal cancer. Beth died

7. Finding Solace in Cyberspace: Voices and Stories from the Real World

in August, 2007 at the age of 27 and her parents fulfilled her dream of meeting Joana when they traveled to Joana’s California home that fall. “I have brothers and sisters in three different states, and Beth’s CarePages website gave everyone a chance to stay connected. It also helped Beth feel less isolated, more involved with everyday social activities. She’d get messages from people she hadn’t heard from in years, which always brightened up her day.” (Kim) “I’m a bereavement counselor, and CarePages is another way I can give back. I regularly keep in touch with seven or eight families who have children with life-threatening diseases. I’m always getting messages saying, ‘Could you visit this site? This person needs help.’ That’s how I think I found Beth.” (Joana) “Joana and Beth were so much alike, so free-spirited and kind.” (Kim) “Just writing what was happening on the updates was such an emotional release.” (Tom) “Joana and her husband were so warm and welcoming when we visited them. They let us stay in their RV, and waking up that first morning in the middle of a redwood forest was an experience I’ll never forget.” (Tom) “I feel so fortunate and honored to have been part of Beth’s life, and to be able to help other children and their families…We’re all in this together, just at different times, in different places.” (Joana)

“There is a light in this world, a healing spirit more powerful than any darkness we may encounter. We sometime lose sight of this force when there is suffering, and too much pain. Then suddenly, the spirit will emerge through the lives of ordinary people who hear a call and answer in extraordinary ways.” Mother Teresa

What’s Next?

The Health 3.0 Community In 2001, the Institute of Medicine (IOM) published “Crossing the Quality Chasm: A New Health System for the 21st Century,” which laid out “Six Aims for Improvement” as well as certain rules for system redesign. Its third goal was that “healthcare must be patient-centered,” and one of its rules was that “knowledge is shared and information flows freely.” These are the underpinnings for Health 2.0, which is entirely patient-centric and has enabled millions of Americans to benefit from others’ knowledge and experiences. Together, we are making progress towards the IOM goal of creating a healthcare environment in which “the individual patient’s culture, social context, and specific needs are respected, and the patient plays an active role in making decisions about his or her own care.” Technology will no doubt influence how Health 2.0 evolves, probably in ways none of us can now imagine. In “The Wisdom of Patients: Healthcare Meets Online Social Media,” a report commissioned by the California Healthcare Foundation, author Jane Sarasohn-Kahn predicts that, “those people who choose to use social media for managing health and gaining support will find a growing array of tools and modalities – increasingly mobile ones. In the next few years, we will see countless social media projects focusing on specific diseases and sub-specialty areas, built by and for patients, caregivers and providers.” Another likely development will be the growing popularity of bloggers writing about their own personal health issues and challenges. The medical community has long recognized that the act of writing such personal narratives has health benefits, yet recent research suggests that blogging may be even more beneficial than journaling. According to a Newsweek story, “Psychiatrists are starting to tout the therapeutic power of blogging, and many have begun incorporating it into patient treatment.” “The article notes that blogging seems to fulfill a primal need for sympathy, quoting Harvard neurologist Alice Flaherty, who says, “Writing is an effort of the brain to

8. What’s Next? The Health 3.0 Community

communicate for comfort. Diaries are a form of that communication, but removed. Blogging gets you closer to that sympathetic audience, and that’s what makes it therapeutic.” A glimpse of Health 2.0’s future, however, might best be seen through the lens of several of its most notable characteristics. The first is the widespread acceptance and adoption of the Internet as a medium for all kinds of highly personal social interactions about health-related topics and concerns. Also, the networks formed specifically for this purpose have grown increasingly larger (CarePages, for example, has more than 3.5 million members). Lastly, more and more communications throughout these networks are indicative of a broader healthcare trend, i.e., the growing recognition of the importance of “whole person” care, which has physical, psychological, spiritual and emotional components. These inter-related trends would seem to indicate not only that the size and number of health-related Internet communities will continue to grow, but also that more people will turn to them to meet their social/emotional as well as informational needs. In other words, Health 3.0 will be all about “community.” A key factor likely to accelerate this movement is something well known to hospital volunteers, social workers and pastors–it not only is better to give than to receive, but it makes you feel better, too. Just ask the tens of thousands of people who became part of a virtual community of caregivers for Miles Levin.

Miles’s Story Several years ago, Miles Levin was diagnosed with a rare and ultimately fatal form of cancer. Early in his treatment, he created a CarePages website that became his blog to journal his thoughts and insights about living and dying. His CarePages website attracted close to 30,000 visitors, who came to offer support and came away with an appreciation for living life to the fullest no matter what the circumstances. Miles died in August, 2007 just before his 19th birthday, but even a year later, new posts on the site were still talking about him and his positive impact, such as one couple who wrote: “Your words and deeds are still an inspiration to me and will be forever. If I live to be 100, I will still not be able to begin to have anywhere near the impact you have had. Thank you for sharing you with us.” The story of Miles is illustrative of how online communities can transform health-related challenges into uplifting, inspirational experiences for all participants involved. As the Health 3.0 community expands and evolves, all of us will have more opportunities to help everyone affected by health issues and meet their primal needs for the emotional connections which are so vital to the healing process.

9. What’s Next? The Health 3.0 Community

“Your biological vitality means very little – having a beating heart and operational lungs does not define you. Your effect on the world around you does. Once you fulfill that service, your shift is done. You’re off work and it’s time to go home.” Miles Levin, writing on his CarePages website a year before his death at the age of 18.

Sources iCrossing, “How America Searches: Health & Wellness,” January 14, 2008. New York Times series of articles, August 14-26, 2005. Clark, Paul Alexander M.P.A. et al. “Addressing Patients’ Emotional and Spiritual Needs.” The Joint Commission Journal on Quality and Safety, 29 (2003). Journal of Clinical Oncology, Vol 25, No 36 (December 20), 2007: pp. 5748-5752. Mitchinson, Allison R. MPH, NCTMB et al. “Social Connectedness and Patient Recovery after Major Operations.” Journal of the American College of Surgeons 206.2 (2008): 292-300. Nielsen Online study, commissioned by CarePages, consumer-created content analysis, May 2008. CarePages Inc., survey of nearly 900 participants, November 2007. National Research Corporation’s Healthcare Market Guide; 240,000 respondents, 2006. iHealth Reports, “The Wisdom of Patients: Healthcare Meets Online Social Media,” April, 2008. Berkman L.F. and Syme S. L. “Social Networks, Host Resistant and Mortality: A Nine-Year Follow-up Study of Alameda County Residents.” American Journal of Epidemiology. 109:186-204, 1979. Ahern DK, Gorkin L, Anderson JL, Tierney C, Hallstrom A, Ewart C, Capone RJ, Schron E, Kornfeld D, Herd JA, et al. Biobehavioral variables and mortality or cardiac arrest in the Cardiac Arrhythmia Pilot Study (CAPS). Am J Cardiol. 1990;66:59–62. Gorkin L, Schron EB, Brooks MM, Wiklund I, Kellen J, Verter J, Schoenberger JA, Pawitan Y, Morris M, Shumaker S. Psychosocial predictors of mortality in the Cardiac Arrhythmia Suppression Trial-1 (CAST-1). Am J Cardiol. 1993;71:263–267. Forrester Research, “Health Marketers: Create a Social Computing Game Plan,” November 2007. ComScore, September 2008. Pew Internet and American Life Project reports, October 2007 to August 2008. Forrester Research, “How Consumers Use Social Computing for Health”. TLContact, user survey; 19,000 respondents, 2006. Associated Press, “Patient Web Sites Used for News, Support in Crisis,” June 8, 2008. JupiterResearch, “Online Health: Assessing the Risk and Opportunity of Social and One-to-One Media,” 2007. eMarketer “Word of Mouth Marketing report,” June 2007. Grady, Denise, “For Cancer Patients, Empathy Goes a Long Way,” New York Times, January 8, 2008. Psychiatric News, “Take Gains From Placebo Effect More Seriously, Psychiatrists Urged,” May 5, 2000. Kronenberg, Paul, “It’s Time to Curb ‘Medical Arrogance,” The Post-Standard, October 28, 2007.

10. Sources

CarePages

SM

CarePages, Inc. 4043 N. Ravenswood Suite 301 Chicago, IL 60613 Copyright ©2008, CarePages, Inc. All rights reserved.