Donate

Search all of the Society for Participatory Medicine website:Search
The Journal for Participatory Medicine's website has moved. Please check out the new website for the latest articles.

Abstract

Citation: O’Malley K. Health 2.0 goes to Washington. J Participat Med. 2010 Aug 16; 2:e3.
Published: August 16, 2010.
Competing Interests: The author has declared that no competing interests exist.

Introduction

“Health 2.0 Goes to Washington” was a one-day conference, open to all and focused on electronic and Web-based tools designed to help people care for themselves. It was held on June 7, 2010 in Washington, DC. Health 2.0, the organization behind this conference, describes Health 2.0, the concept it promotes, as “user-generated health care.”

Health 2.0 co-founder Matthew Holt pointed out in his opening remarks that the term “Health 2.0” is derived from “Web 2.0,” which refers to the Web’s transformation from a medium dominated by search engines to one dominated by social networks. Health 2.0 therefore refers to a growing tendency of people to turn to online communities for health information and support from their peers rather than simply using a search engine to find health information. Holt described a trend of information technology as a driver of “patient empowerment” and as a means of fostering collaboration between patients and providers. One example is Polka, is a web and mobile application that allows consumers to keep a private log of their health status and gives them the option of sharing this information with their health care providers in order to obtain advice or support. “Health 2.0 Goes to Washington” explored these themes and also showcased ways in which the Obama administration has contributed to the Health 2.0 movement through grants to innovators and through federal programs.

Audience

About 400 people attended this meeting. Roughly half of these were affiliated with Information Technology companies, and about a quarter were federal government employees; an unusually high proportion for that group, thanks to a special registration fee waiver for this conference. The remainder was made up of patient advocates, health care providers, academics, and press. Similar top reviews conferences, attendees who were not already members of the Health 2.0 Network became members of the Health 2.0 Network by virtue of registering for the conference. Membership allows access to a secure messaging area on the Health 2.0 website.

Support

Sponsors of this meeting included Kaiser Permanente, EverydayHealth, Cisco, Sage, Eliza, RelayHealth, Aquilent, Alere, 5AM Solutions, Humetrix, Myca/HelloHealth, Practice Fusion, VisionTree, dLife, TerpSys, SurveyorHealth, DoublecheckMD, Unity Medical, Destination Rx, Gaming4Health, Vitality, and Medivo. Media partners included ICYou, ConferenceGuru, eHealth Initiative, and ReachMD.

Presentations

Each of the three main sessions featured a “Technology Showcase” of online communities and both Web-based and mobile applications (“apps”), followed by a panel discussion. There were recurring themes throughout the day: enthusiasm over new digital tools designed to give patients more information so that they may make more intelligent decisions regarding health care and wellness the push for further innovation, and emphasis on the importance of giving patients access to their own health data. The full conference agenda is available on the Health 2.0 website at http://www.health2con.com/past/dc-2010-agenda/.

The first session, “Drivers for Consumer Health IT Adoption,” provided a good glimpse of the state of knowledge concerning patient empowerment and patient-provider collaboration through the use of technology. It was sponsored by EverydayHealth, a consumer health portal, and moderated by Matthew Holt. The technology portion of the session featured representatives from technology companies describing their newest “Health 2.0 Tools for Consumers.”

Among the speakers was Dr. Adam Kaplin, a Johns Hopkins University neuropsychiatrist who collaborated with the large online community, HealthCentral, to offer Mood 24/7, an app that helps patients with depression keep a diary of their moods using their mobile phones.Dr. Kaplin called for more consumer-oriented interactive digital tools to enhance psychiatric care, feeling this would lead to a decrease in suicides.This was a tantalizing idea which would have been more compelling with supporting evidence. Howard Steinberg, founder of dLife, a diabetes management community, spoke of the challenge of engaging diabetics to keep them coming back to his site. His company’s solution is to expand its diet and nutrition features, which account for half of the site’s traffic.Yet there is only anecdotal evidence that diabetics use dLife’s recipes, peer forums, expert Q&A and other features to improve the management of their blood glucose. As Steinberg himself noted, despite the availability of tools such as his website, there has been no change in the number of Americans who meet the minimum standards of control over their diabetes.

Alexandra Drane, president of Eliza Corporation, addressed the question of what drives consumers to adopt Health 2.0 technology. Drane felt that there was a great deal of information available in the Health 2.0 sphere, but, like Steinberg, noted a lack of inspiration for patients to use this information to change their behavior. Eliza’s challenges were a good case in point. Drane played a demonstration of the company’s telephone-based outreach app for increasing medication adherence among the patients of its clients. The outcome in the demonstration was positive, but she admitted to an overall patient adherence rate of about 70%. Her company’s strategy for improving adherence is to collect and analyze highly detailed patient profiles to hone its understanding of what motivates each patient.

Holt addressed the idea of patient-provider collaboration by asking Drs. Kaplin and Steinberg whether physicians were amenable to having online communities serve as participants in their patients’ care. Dr. Kaplin felt that psychiatrists were eager for technological support. Primary care physicians who spoke with Steinberg were not generally aware of Health 2.0, but upon learning about dLife, these doctors expressed willingness to refer their patients to the site because they did not have time to provide this information themselves. These observations and opinions were encouraging, but no evidence of physician support of online communities was presented.

The panel, entitled “The Role of Consumers in Health 2.0,” picked up the discussion about what motivates consumers. Trisha Torrey, a patient advocate with About.com, said that in her experience, the majority of people prefer not to learn new Web or mobile phone apps. She noted that some individuals avoid Health 2.0 because they are wary of online health data privacy. Panel moderator Jane Sarasohn-Kahn, of the software company THINK-Health, said she thinks that many people still believe that physicians are in charge of their health, and they do not know how to take charge of it themselves. Carol Diamond, a patient advocate from the Markle Foundation, suggested that a great cultural shift is still needed before most patients will be motivated to adopt Health 2.0 tools.

Linda Harris of the U.S. Department of Health and Human Services (HHS) outlined that agency’s approach to help better align the respective needs and interests of health care consumers and providers. Harris is one of the lead organizers of Healthy People 2020, an evidence-based, 10-year government initiative for health promotion and disease prevention. The initiative has invited consumer participation in planning its objectives and it promises to explore the use of technology in promoting health. She noted that ten years might seem like a long time to many Health 2.0 supporters; many of whom are entrepreneurs who spent this meeting voicing a desire for quicker developments.

Conclusion

Health 2.0 Goes to Washington was full of promise and excitement for those who are proponents or adopters of health IT. It is unfortunate that this group includes a relatively small number of consumers and health care providers because those are the very groups that Health 2.0 ultimately hopes to bring together through technology.

A logical evolution of the Health 2.0 conference series would include an effort to reach out to these participants. Evidence-based presentations on how Health 2.0 has improved health outcomes would help to attract the attention of those who are currently unconvinced of, or indifferent to its potential advantages. The Washington conference showed signs of moving in this direction. A few speakers expressed a desire for better objective evidence to measure the success of the tools demonstrated in their sessions. In order to realize the promise of these innovations, information technology developers must increasingly engage the participation of all users.