PatientsLikeMe: Connecting People, Conducting Human Subjects Research

The promise of health-oriented social networks is to empower people and improve their health. PatientsLikeMe, an early leader in this field, also allows paying customers to learn from members’ online interactions. But it goes a step further by conducting its own human subjects research using the health information its members share.

In addition to allowing others to pay for data access, PatientsLikeMe has published research of its community in peer-reviewed journals. But it does not appear to use any institutional review board (IRB) or external review, as medical researchers do. Here are my findings from reviewing the full text articles (hyperlinks to abstracts):

1. ALS patients request more information about cognitive symptoms. Eur J Neurol 2008 May;15(5):497-500. “Participants were invited to take part in accordance with the principles of the Declaration of Helsinki.” No comment on IRB exemption or review.

2. Measuring function in advanced ALS: validation of ALSFRS-EX extension items. Eur J Neurol 2009 Mar;16(3):353-9. No comment on IRB exemption or review. Consulted PatientsLikeMe community member with ALS, C. Wolf, a study co-author.

3. Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another's data. J Med Internet Res 2008 May 27;10(3):e15. No comment on IRB exemption or review.

4. Sharing health data for better outcomes on PatientsLikeMe. J Med Internet Res 2010 Jun 14;12(2):e19.

“As an internal research project without external sponsors, and with no anticipated adverse consequences for participation, institutional review board (IRB) approval was not sought for this project.”

“User data was protected in accordance with PatientsLikeMe’s internal security standard operating procedures, which include password protection, deidentification of locally held data files, regular automated backup, and physical protection of IT hardware.”

5. Patient-reported outcomes as a source of evidence in off-label prescribing: analysis of data from PatientsLikeMe. J Med Internet Res 2011 Jan 21;13(1):e6. No comment on IRB exemption or review.

6. Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nat Biotechnol 2011 May;29(5):411-4. No comment on IRB exemption or review in article or online supplemental materials.

7. Use of an online community to develop patient-reported outcome instruments: the Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ). J Med Internet Res 2011 Jan 24;13(1):e12.

Finally, IRB review. But… “The study was approved by Western Institution Review Board (WIRB), Olympia, WA, USA (Study 1111772). Patients gave informed consent electronically. Members of PatientsLikeMe join the site with the expectation that they will be participating in research.”

I’ve always applied for IRB approval or exemption in research involving patients. This process ensures that medical research is ethical, prioritizes safety, and provides transparency. Perhaps some of the studies did use an IRB process that wasn’t published in the article, but it should raise a red flag for the peer review process by these journals. They are responsible for allowing the research to be published. To improve transparency, all manuscripts should explicitly state whether IRB review or exemption occurred.

PatientsLikeMe is an outlier because it overtly embraces the belief that its community members expect to be research subjects. But many health-oriented social networks sell data about us. You can argue that the process of conducting research can be streamlined, but we should understand that the information we share online can be sold to researchers and businesses. And the research results of their studies may not be shared with us at all. Like in the Tuskegee Study, discoveries could be kept secret to benefit researchers or industry and potentially harm patients.

I would suggest that the Belmont Report, a cornerstone of ethical medical research, applies to social networks involved in data mining patient health information as a business model. Health-oriented social networks don’t have enough of a track record or enough transparency to convince me that these platforms for sharing information are safe, effective and minimize the risk of harm.

What do you think?

Matthew Katz, M.D. served on the External Advisory Board for the Mayo Clinic Center for Social Media and is a Platinum Fellow of the Mayo Clinic Social Media Network.

Choose a message to share 
PatientsLikeMe: Connecting People, Conducting Human Subjects Research
The promise of health-oriented social networks is to empower people and improve their health.
PatientsLikeMe: Connecting People, Conducting Human Subjects Research | Mayo Clinic Social Media Network

Please sign in or register to post a reply.