What can happen when patients have open access to one another’s data

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Being a regular participant and visitor to sites like PatientsLikeMe (PLM), I was most pleased to note this post from the PLM blog.

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There is growing interest in and demand for access to personal health information and tools to review and discuss this information. But why? What do patients get from reviewing health information? More research is needed to know the answer.

To examine this question and understand what value users get from one another’s information, Michael Massagli and I began to read through, categorize, and analyze some of the comments users have posted on the site. We are happy to say that the results of our study were published this week in the peer-reviewed open access journal, the Journal of Medical Internet Research, in the paper entitled Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data.

ABSTRACT

Background: This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their health care providers. While this type of record does seem to have beneficial effects for the patient–physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders—the patients—is not well documented or understood.

Kudos to Jeana & Michael and the rest of the team for preparing and sharing this work.

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Edited by G Eysenbach; submitted 28.02.08; peer-reviewed by D Hansen, L Neal; comments to author 31.03.08; revised version received 22.04.08; accepted 23.04.08; published 27.05.08

Frost JH, Massagli MP
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;10(3):e15


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Copyright
© Jeana H Frost, Michael P Massagli. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 27.05.2008. Except where otherwise noted, articles published in the Journal of Medical Internet Research are distributed under the terms of the Creative Commons Attribution License (http://www.creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided 1) the original work is properly cited, including full bibliographic details and the original article URL on www.jmir.org, and 2) this statement is included.