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

PUBLIC ACCESS TO HTML VERSION

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.

Things Can Only Get Better

This wasn't the track/vid that I was looking for (as an introduction) but since Howard Jones et al provided much inspiration to me as a musician in the past, I pasted it in.




Two new-ish fab Open Access Journals to blog about c/o BioMed Central.

Journal of Medical Case Reports (JMCR)

Video Introduction from Editor-in-Chief, Prof Michael Kidd

and sister publication

Cases Journal

Video Introduction from Editor-in-Chief, Prof Richard Smith

In light of McDawg's ongoing interest in Patient Advocacy and Open Access - these are most certainly worth spreading the word about.

To me, this very much ties in with the likes of PatientsLikeMe and similar entities like Health 2.0 and Sermo where web 2.0 concepts come to fruition.

From the Cases blog:-

The patient’s perspective: What are they so excited about?

"..a great cutting-edge idea!” – Robert Dellavalle MD, PhD, MSPH

“a welcome idea that chimes well with other initiatives around the world - this is a great idea from JMCR” – Professor Robert Hunter BSc, MBChB, MD, FRCPsych

“a great addition to JMCR” – Christian A. Koch, MD, PhD, FACP, FACE

“..a fantastic idea… looking forward to see how it develops” - Jean Karl Soler MD MSc MMCFD

More under the fold.


Why do we need Cases Journal?

"...There are then more frivolous - but still important - reasons for encouraging mass publication of case reports. Doctors - just like everybody else - relate more to stories than they do to statistics and abstractions. Successful politicians understand this well - eschewing complicated numbers for powerful human stories. And this is the age of Web 2.0 and Facebook. We are fed up listening to experts and watching the same old television channels. We want to create our own material, live in a bottom up rather than a top down world. That's perhaps why our sister journal and Sermo, "a practicing [online] community of 50,000 physicians [in the US] who exchange clinical insights, observations, and review cases in real time - all the time", are doing so well [18]. Here on our site everybody who sees a patient - and everybody who is a patient (that's everybody) - can contribute. We urge you to do so. Let's see if we can create something exciting, special, new, fun, and useful."


Kudos to Michael and Richard.

Comment - There is (of course) a heck of a lot more to Open Access than just Health related issues. McDawg however is personally attuned to this objective area - hence this particular post.