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

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.

We, at PatientsLikeMe, think that patients can get more value from recording their health information when they share the results with one another – so that patients can learn not only from their own experience but also from the experience of others.As a first study, we looked at just one behavior on the site, the comments users post on one another’s profile. In many ways comments are not central to the site – forum and private messaging support more in depth conversations. But, because they are located on the profile itself, users tend to talk about data within these comments. In a qualitative analysis of a specific set of comments, we noticed a few themes. These were:

1. Members read other people’s profiles to find an informed person of whom to ask advice. They see, for example, that the user tried a particular treatment or has had a specific experience then asks him or her about the it (e.g. “I see you went on Bipap and your functional level improved, did Bipap really help that much?“)
2. Members offer personally acquired knowledge to those most likely to benefit from it on topics like treating a symptom, or getting an assistive device (e.g. one patient commented: “I see you note emotional lability. I had that very bad, but now I take a compound of dextromethorphan and quinidine that controls it beautifully”).
3. As members review one another’s profiles, they identify particular points of similarity. Based on that similarity they begin a conversation and make an effort to establish an ongoing relationship (e.g. users says things like: I see we both had the same type of onset and are about the same age and health status, I would like to be available to compare health progress).

While this is just a first study of only one element of the site, this work describes what our users are capable of – how they are able to identify and dissect important features of the profile and use data to inform themselves and one another.

Understanding how people use data will also help us design increasingly sophisticated tools to support data-centered conversations on the site. Our goal is to help users receive the maximum benefit from sharing health information and experience. For more information, please take a look at the full paper – it is freely available online.