Patients can handle the truth, and are looking for it: peer-to-peer health care

Most health consumers in the U.S. use the internet to seek health information, socialization and empowerment. Dig deeper, and you’ll find a growing cadre of people who go online to find people with the same conditions they have; 1 in 4 people (23%) among those living with chronic conditions have gone online to ID others like them, including people with high blood pressure, diabetes, heart disease, lung conditions, cancer, and other chronic health issues. The percentage of people looking for “people like me” drops to 15% of internet users with no chronic conditions seeking health-peers online.

However, peers-in-health aren’t always seen as the ideal source for health information. Some sources are seen better than others by people using the internet for health activities at different times. People turn to professional sources (e.g., doctors and nurses, et. al.) most often for medical diagnoses, information about prescription drugs and alternative treatments, and recommendations for doctors and hospitals.

On the other hand, people look more to “patients like me,” friends and family for emotional support in dealing with their health or a remedy for an everyday health issue.

Health professionals and patients/friends/family are virtually tied when it comes to health consumers seeking practical advice for coping with day-to-day health. As a respondent told the Pew Internet & American Life Project (PIP), “When time is of the essence, search on the internet is the only way to time travel.”

PIP partnered with the California HealthCare Foundation to conduct a survey among U.S. adults resulting in the report, Peer-to-peer healthcare, dated February 28, 2011.

Digging deeper beyond people with chronic conditions, PIP and CHCF focused in on people with rare diseases through research conducted with NORD, the National Organization for Rare Disorders. Peer-to-peer health is particularly important and emergent among people diagnosed with conditions that few in their community have. In this scenario, the patient can feel and be isolated from mainstream community care. Thus, in ACOR‘s 2007 study, patients said that information exchange and not ‘just’ emotional support was the key driver in the ACOR community. The PIP report points out that communities such as CureTogether and PatientsLikeMe enable patients with rare conditions to make more informed treatment decisions.

Health Populi’s Hot Points: Welcome to the DIY health-information mash-up era of empowered patients. Engaged health citizens use a mix of sources for managing health: peers, professionals, family, friends, and the growing roster of communities, portals and tools online targeting health issues.

I often point to Jack Nicholson’s character, Colonel Nathan R. Jessep, in A Few Good Men, featured in the video above. Col. Jessep tells Tom Cruise’s Lt. Kaffee, “You can’t handle the truth.”

There is sufficient evidence gathered through the maturation of patient-centered social networks online that patients, indeed, can handle the truth. They want more than emotional support, although health citizens certainly want that: engaged patients want access to health expertise, to manage both the toughest acute diagnosis as well as everyday health, just-in-time, advice.

4 Responses to Patients can handle the truth, and are looking for it: peer-to-peer health care

  1. Gilles Frydman February 28, 2011 at 3:58 pm #

    One short comment: The analysis is new, the behaviors are not. While publishing this data is very important, it is equally important to note that people have been doing what is assessed here for more than 15 years. In reality the behavior of people with rare diseases was to immediately embrace internet based communities as soon as they became available. It just happened,organically, because it was a natural development. For many years al of it was under the radar. That fact should not take away the significance of the massive number of early implementers. Today we see a fascinating parallel developing with the use of social media by the Middle East youth. In both cases, the power of engagement and the willingness to forget about real privacy concerns are profoundly and instantly transforming the social maps associated with the communities.

  2. Mark Spohr February 28, 2011 at 5:19 pm #

    Thank you for discussing this post. It is very useful and important information. It shows that patients are both rational and conscientious in seeking medical advice. Some commentators seem to glibly denigrate patients stating that they don’t use health resources appropriately, ignore professionals and run after quack cures. This PIP survey shows sophisticated decision making in the use of health resources.
    Patients do want the truth and can handle the truth. They use professionals when appropriate and rely on social networks appropriately.

  3. Susannah Fox March 1, 2011 at 2:27 pm #

    When I’m writing, I often think, “What will Jane think of this data point?” so it’s a thrill to read this post and know that the Pew Internet Project’s research is relevant to your work.

    Gilles, I completely agree. As I wrote on e-patients.net, some of the pioneering work in patient communities from the 1990s has not yet been topped. You’ll keep shining the light on the path and eventually people will find it.

    You might also be interested in a report released today by a coalition of orgs, including Pew Internet:

    http://www.pewinternet.org/Reports/2011/08-Community-Information-Systems.aspx

    The essential finding: When governments share information, people feel better about their community. Do you think there might be a parallel in healthcare? :)

    Mark, thanks for commenting on one of my favorite points: it’s time to stop knocking down the straw men in e-health and get to the real issues.

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