Groups, mainly led by patients, are now beginning to take matters into their own hands to address problems that the health system has continued to ignore.
The safety of internet health data has been an ongoing concern, as well as the subject of a good deal of research. A recent post on e-Patients.net brings up an interesting point on this topic from an editorial entitled, “Trying to Measure the Quality of Health Information on the Internet: Is It Time to Move On?” in the latest issue of the Journal of Rheumatology.
The authors, Amol Deshpande, MD, MBA and Alejandro Jadad, MD, DPhil, FRCPC, FCAHS, note that:
“Researchers, for their part, continue to view the role of health professionals as “providers and protectors,” able to control, or in some way “regulate” the types and amount of information that patients, their loved ones, or the public should or could access. This contrasts sharply with what is happening today in the real world. Groups, mainly led by patients, are now beginning to take matters into their own hands to address problems that the health system has continued to ignore. Instead of conforming to the traditional asymmetrical offline patient-physician relationship, the public is embracing the tenets of Web 2.0, opening new horizons for a level playing field and improved health services.
The time has likely come to end our Byzantine discussions about whether and how to measure the quality of online health information. The public has moved on. It is time to join them in what promises to be an exciting voyage of human fellowship, with new discoveries and exciting ways to achieve optimal levels of health.”
For people with rare disorders, online sources of health data are especially important, because there are frequently few alternative ways to find the information they are desperate for. So I suspect the level of engagement and the quality of information in rare disorder communities is even higher than the level reported for general health content in the most recent PEW Internet Project :
* 6 in 10 e-patients access user-generated content related to health.
* 20% of e-patients have posted or shared such content.
* 53% of e-patients have consulted Wikipedia.
* Fully 60% of e-patients say that they or someone they know has been helped by online health information, up from 31% in 2006.
* The percentage who say they or someone they know has been harmed has remained flat – just 3%.
This is a trend that seems to be holding.
Participation in Online Communities Helps Patients Better Manage Their Health Care
Susannah Fox from PEW attended a CDC public health event last week and shared this case study in her blog post.
PatientsLikeMe is more like an information network than a social network since they are helping people to record the observations of daily living which can inform someone’s treatment. But they network those records so fellow patients can benefit from other people’s data.
Peer to peer advice turns out to be powerful and influential. A survey of HIV community members on PatientsLikeMe found that two-thirds of respondents said they are more knowledgeable about risks and benefits of a “treatment holiday” because of what they have learned from other users at PatientsLikeMe. Seven in ten said using PLM has increased their interest in results of tests ordered by the doctor treating their HIV.
These patients are under the care of health professionals, but exchanging data, insights, and information to take better care of themselves.
We are still left with regulatory barriers that keep pharma companies from fully engaging in social media, even though they have information that could help the community. I guess the next question will be, “Can online health information from pharma be trusted?” Let me know what you think.
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(Image courtesy of CarbonNYC via Flickr)