Medicine 2.0 and Participatory Medicine

I wrote an article a few months back that focused on Medicine 2.0 and Participatory Medicine for ASN Kidney News, a newsmagazine that examines research findings and policy changes for practitioners in kidney health and disease. It just came out in this month’s edition of the magazine. I’ve republished the article below, but you can read the online version in the June 2010 edition of Kidney News

Medicine 2.0 and Participatory Medicine

A transformation is occurring in science, specifically in the domains of health and medicine. Second-generation Web technologies that facilitate interaction between users are changing the way healthcare professionals communicate with each other, as well as with patients, health consumers and biomedical researchers. Indeed, “Web 2.0″ applications, including social networks (Facebook, Twitter, FriendFeed), video and photo sharing sites (YouTube, Flickr), social bookmarking and folksonomies (Digg, Reddit, StumbleUpon), blogs and wikis, are changing the way people communicate, collaborate and find information that is both interesting and relevant. These technologies are bringing people together in an interactive space and enabling them to create and distribute content online in a manner that has never been possible before.

Medicine 2.0 or “second generation medicine” is the science of maintaining and/or restoring human health through the study, diagnosis and treatment of patients, leveraging Web 2.0 Internet-based services to collaborate, exchange information and share knowledge. Physicians, nurses, biomedical students and researchers who consume Web media can actively participate in the creation and distribution of content, helping to customize information and technology for their own purposes. Although the terms Medicine 2.0 and Health 2.0 are often used interchangeably, Medicine 2.0 typically refers to the science of medicine and the practice of treating patients, while Health 2.0 is focused on the business of health, including the delivery, quality, safety and cost or efficiency of the people, a practice or facility.

A suggested framework for Medicine 2.0 depicts three main user groups of current Medicine 2.0 applications: consumers/patients, health professionals and biomedical researchers [1]. This expands upon the previous definition of Medicine 2.0 to include several user groups with different levels of training and expertise outside the traditional domain of medicine. Five themes emerge from this model: social networking, participation, apomediation (i.e. networked collaborative filtering processes that help users navigate the flood of information afforded by the Internet and digital media), collaboration and openness.

Online communication between physicians and patients is growing. According to a recent study, 39% of physicians now communicate electronically with their patients [2]. Indeed, patients do more than just communicate with their doctors; they are active participants in Medicine 2.0. These “e-patients” use the internet to access health information, connect with other patients and collaborate with others to manage their healthcare. According to a Pew Internet study, 60% of e-patients access social media content related to health [3]. Such a model of medical care, termed “participatory medicine”, is based on the development of a team that includes the patient, patient groups and specialized social networks, the entire healthcare team and clinical researchers in a collaborative relationship. Participatory medicine requires openness, with equal and unobstructed access to all health data as well as equal rights in the decision-making process.

Unfortunately, with all the reliable health information online, an equal or greater amount of misinformation also exists. Anti-vaccination proponents and homeopaths have embraced digital media and exert considerable influence on patients. According to the National Assessment of Adult Literacy, only 12% of American adults have proficient health literacy; 14% have below basic health literacy [4]. Thus, health professionals and biomedical researchers have a duty to combat the growing body of health and medical misinformation on the Web, and to help educate health consumers on the basic information needed to make appropriate health decisions for the prevention or treatment of illness.

Medicine 2.0 provides a powerful approach to engage, educate and empower end users. The themes emerging from Web 2.0 in health and medicine illustrate the evolution of our health system, and emphasize communication, participation, collaboration, apomediation and openness. As medicine continues the shift to Medicine 2.0 to meet the healthcare needs of consumers, these themes will persist beyond the social applications and services offered today.

Change isn’t coming to medicine, it’s already here. Are you ready?

References

  1. Eysenbach G. Medicine2.0: social networking, collaboration, participation, apomediation, and openness. J Med Internet Res. 2008 Aug 25;10(3):e22.
  2. Physicians in 2012: The Outlook on Health Information Technology. Manhattan Research. 2009.
  3. Fox S and Jones S. The Social Life of Health Information: Americans’ pursuit of health takes place within a widening network of both online and offline sources. Pew Internet & American Life Project. Washington, DC. 2009.
  4. Kutner M, Greenberg E, Jin Y, and Paulsen C. The Health Literacy of America’s Adults: Results From the 2003 National Assessment of Adult Literacy (NCES 2006:483). U.S. Department of Education. Washington, DC: National Center for Education Statistics. 2006.

Walter Jessen, Ph.D., is a cancer biologist and bioinformatician at Cincinnati Children’s Hospital (http://www.walterjessen.com). Since 2006, he has promoted advances in biomedical research to encourage health literacy at Highlight HEALTH (http://www.highlighthealth.com). Dr. Jessen moderated the session “Medicine 2.0 and Science 2.0 – where do they intersect?” at the ScienceOnline 2010 conference in January (http://www.scienceonline2010.com).

Walter Jessen is a digital strategist, writer, web developer and data scientist. You can typically find him behind the screen something with an internet connection.

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