Like everything on this blog, this post is my own personal candid thoughts. I visited an organization working in a similar space as Consumer Reports, and in this post I say some things about me, my organization, and this organization. This post is intended to be entirely positive about everything I saw, because I felt positive about everything I saw.
Wednesday 9 April I visited PatientsLikeMe.com’s office in Boston. PatientsLikeMe.com is a commercial company which asks patients to voluntarily give them their personal health information. In return, PatientsLikeMe hosts discussion forums and provides visual interpretations of numerical health data, both of which users find appealing. PatientsLikeMe does not show advertising to users but gets funding by conducting research on their participants health records on behalf of commercial medicine. It is my opinion that they have a clever product but I have serious concerns about patient vulnerability which I do not think their business model addresses.
Let me say this again – PatientsLikeMe.com is an awesome company that brings a lot of radically new benefits for consumers to the marketplace. They take health information from consumers, which is an asset of almost no value to consumers, and convert that into a product which benefits industry and consumers alike. They give a lot to patients and there is no obvious harm from this, and in the literature, I also cannot find any good explanation of a speculative or potential or future harm coming from this. However, I am concerned that harms may come from this in the same way that harms come from Facebook accepting voluntary user messages and converting those to a product, and the way that Amazon takes product reviews and converts those to a product. These kinds of systems bring a benefit, but because they come from commercial rather than nonprofit operations, they increase the power of those entities which in the long term do not have the consumer’s interests in mind.
That said, I am grateful to have been hosted by PatientsLikeMe, they are in my thoughts, and I am very pleased with their innovations in bringing benefits to patients. If I could moderate what they do, it would be that I wish an organization like Consumer Reports would publish a statement to consumers advising them about the implications of donating personal data to any kind of website. When the news media thinks about personal privacy, they usually think of credit cards. In privacy circles though the concern is always about how corporations monetize innocuous information that has no value to a single person, but as they collect more data, they build a commercial empire in cheap real estate which could instead be reserved for non-profit community efforts rather than selfish corporate ones. I would not want anyone to say anything bad about PatientsLikeMe in this way because they are a small player operating in a space others do not explore, but still, I feel that they need an ideological counterpoint.
PatientsLikeMe talks about the benefits but not the drawbacks of sharing personal health information online, and of course they have a conflict of interest which compels them to speak in this way. It is my opinion that someone, perhaps Consumer Reports, should enunciate an overview of the negative consequences about sharing health information online. I am not sure who is already in this space. With John Santa (CR’s medical director) talking about open notes then it would not be inappropriate for us to assume that if we promote a right to access, then it will follow that people will begin sharing access in all kinds of ways.
Here is a summary of what was discussed:
Without detailing specifics, their founder and a “friend of Jim (Guest)” Jamie Heywood said that he wished that Consumer Reports would call for reform of online health information in a way is analogous to what CR did for car safety 50 years ago. It was nice of him to say this. He also wanted to influence and access data in our annual questionnaire, which is what lots of companies have wanted for many decades.
PatientsLikeMe has explored providing expert information in its forums using publications of Mayo Clinic and WebMD. Because of concerns of quality and because they cannot cover every topic, PatientsLikeMe decided to provide no information at this time. I expect this information would be completely unsurprising to anyone who thought about this, because obviously PatientsLikeMe wants to deliver health information, and obviously those two are the biggest players in the field even though – in my opinion – they have dubious products. Consumer Reports’ Choosing Wisely health educational campaign materials could be a proposed intervention in community forums like this, but since even moreso that Mayo Clinic and the rest Choosing Wisely is a narrow health campaign which does not purport to cover all possible health issues, companies like PatientsLikeMe would be more comfortable sharing nothing when no ideal comprehensive source of all health information exists. If they share anything, whatever faults and omissions they have are conspicuous, but if they do nothing, no one expects them to try. Wikipedia certainly has this problem; I often tell people it is the best information in the world, and that it is also horrible. By that I mean that no good health information exists anywhere but Wikipedia is the least bad of the options available to consumers.
Jamie Heywood asked me about Consumer Reports National Research Center and our annual questionnaire. The context was that Consumer Reports had previously contributed to an IOM study about consumer perceptions of health information online. He said that the most notable success of Consumer Reports was in using consumer opinions to demand safety changes in the automobile industry, and suggested that the infrastructure which achieved that could make recommendations about online health information. Here are some papers about a previous Consumer Reports and PatientsLikeMe research collaboration coordinated by the Institute of Medicine, which embarrassingly I knew nothing about despite it just being from 2012. I have been told repeatedly that the CR brand opens doors and the way Jamie talked about the CR auto reforms made me feel that I was sitting on something big back at the office. I have likewise wanted to dig old stories like that up for re-evaluation because I know people like Jamie appreciate them.
- Communicating with Patients on Health Care Evidence
- Social Networking Sites and the Continuously Learning Health System: A Survey
- Data Altruism: Honoring Patients’ Expectations for Continuous Learning
Matt Scott and I talked about personal health information. While I think all of us are in agreement that consumers should have access to their own health information and be free to make choices about what they will do with it, my interpretation of PatientsLikeMe is that the organization is comfortable asking for personal health information without giving advice about the basis on which such a decision should be made. My expectation of Consumer Reports is that CR would want people to make this decision thoughtfully as they would any other. I am convinced that many benefits would come to society if more people voluntarily shared their health information, but my concerns about drawbacks are not addressed by PatientsLikeMe. PatientsLikeMe, so I understand, does not purport to educate about potential negative consequences of sharing health information in a common pool or otherwise expects that people who need such information should get it elsewhere. If I understand correctly, there is no prominent entity which takes a position on the extent to which consumers should share their health information.
Brad Gescheider talked about participant recruitment. Brad seeks participants in PatientsLikeMe and I mostly talked about Wikipedia’s own community. Brad tells me that PatientsLikeMe has considered all kinds of clever ways to grow their community. Unfortunately I neglected to take notes of our conversation, but I remember that Brad told me what I expected then always described some twist to their strategy which impressed me. Of the people I met that day, I related most with Brad.
I had gotten this meeting through Jeremy Gilbert with whom I had been on a panel at the Partnerships in Clinical Trials conference. I like Jeremy a lot too – he was telling me how PatientsLikeMe got a Robert Wood Johnson Foundation grant to develop questionnaire standards in the Open Research Exchange which are supposed to provide orally generated patient histories which correlate with a certain medical diagnosis and various points in the development of their conditions as they are treated. In other words, these are questions a health care worker can ask to help make a diagnosis on a patient, or evaluate the patients’ state at different times. I am a huge fan of standards and was really glad to hear about the openness built into this. I do not see everything I want to see in an open work in this work – maybe it is there, and maybe it is being developed, but overall, I imagined this project as being a step toward making internationally relevant new treatment tools. Right now, they only work in English, and these kinds of projects do not translate well, but at least the platform is translatable with localization research.