The Wisdom of Patients: Health Care Meets Online Social Media

This document, prepared for the California Healthcare Foundation, addresses the function of social media on the internet as a source of emotional support for patients and as a source of information to help them manage health conditions. According to the author, "The collective wisdom harnessed by social media can yield insights well beyond the knowledge of any single patient or physician." As the internet has moved from being an information-based resource to being a commons for generating and sharing content in and beyond social networks, this document contends that a new movement, labelled "Health 2.0”, has arisen that challenges the notion that health care happens only in a patient-doctor relationship. It suggests that collaborations online are changing the way patients, providers, and researchers learn about therapeutic regimens and disease management.

According to this document, more people in the United States (US) accessed health information via the internet than via physicians in January of 2008. The high volume of consumer internet usage on health conditions is not only due to accessing health information, but also personal connections and stories of health conditions. Research supports the social network structure, even before the advent of the internet, as a way to improve health outcomes, including those in a wide range of conditions from heart failure to post partum depression to preoperative pain and anxiety. Internet tools are increasing the opportunities for social networking.

Because the internet is convening people with shared concerns and creating health information relevant to consumers, the author proposes that a new social phenomenon called “Health 2.0" is being generated from the power of collective wisdom - "clinical insights well beyond that of any single patient or physician". Research quoted here states that consumers' relationships with traditional medical authorities are shifting to trust in social networks. According to the report, the growing demand for transparency will drive the evolution of social media in health. Community editing of false or misleading information is already taking place because consumers, or "prosumers", as named in the article, can access a variety of information sources, use their networks to reconfirm their findings, and then ask for corrections of misinformation and/or disseminate the correct information through their networks.


The most commonly used tools for locating health information, as listed here, are, in order of frequency of use: general search engines; health portals; disease specific sites; health plans; news sites; and health specific search engines, with government sites, drug company sites, hospital/clinic sites, and drug advertising trailing the group. he social media platforms in order of greatest usage are: Wikipedia; online fora/message boards; social networks; video-sharing; blogs; and live chat rooms.


Privacy case law on social networks is just beginning its legal testing. Future court decisions on consumer medical privacy may impact the use of social networks in health care.


Business trends in the online healthcare market are in the early stages of market testing. On the consumer side of spending, the social networks are "[s]hining a light on the data by which payers and consumers make purchasing choices that are more rational and cost effective.” Consumer-generated health ratings are appearing for doctors and hospitals. Because patients can confer with physicians from a point of being well informed, the relationship of patients and physicians is increasingly approaching peer-to-peer communication. The disruption of traditional patient, provider, payer, supplier, and consumer relationships is occurring due to increased information and support networks.


The article proposes that the ways in which consumers access health information will not be limited to computers with web browsers, but will extend to hand held internet access devices and cellphones. It suggests that the next generational leap for the web will be in semantics (word meanings) - enabling the web to understand and, therefore, sort information more effectively. This third generation web would more readily point health information consumers to an aggregate of what they are searching for. As part of this evolution, the article states that there is likely to be a growing array of tools and modalities related to health, as well as increased social network focus and commercial computer products in the health-driven marketplace.