“Patients helping patients live better every day.”
By: Hope Leman
Having discussed MedHelp recently and finding that I kept comparing it in various ways to PatientsLikeMe, I have decided to discuss PatientsLikeMe (PLM) in more depth and compare it a bit more to MedHelp.
One notable, striking difference between them is the lack of advertising on PLM versus the obvious, albeit tasteful and relatively restrained prevalence of ads on MedHelp. That is because PLM employs an intriguing business model. In its own words:
“How does PatientsLikeMe make money?”
We take the information patients share about their experience with the disease, and sell it in a blinded, aggregated and individual format to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data.
By selling this data and engaging our partners in conversations about patient needs, we’re helping them better understand the real world medical value of their products so they can improve them. We are also helping companies accelerate the development of new solutions for patients. Our end goal is improved patient care and quality of life.”
And:
“Does PatientsLikeMe have advertising?”
No, we have chosen not to pursue an ad-based business model right now. We want to preserve the sanctity of our user experience. Our business is based on aggregating anonymized information to provide insights to industry partners derived from the shared real-world experiences of our patient members.”
Note the wiggle room allowed by, “…right now.”
The PLM business models raise fascinating, multifaceted questions about the practical value to the purchasers of this data and the ethical ramifications of running a patient community for profit.
First of all, what diseases and conditions are covered under the PLM rubric? Again, it its own words:
“What disease communities does PatientsLikeMe have?”
We started by building a strong ALS community, and have expanded to include Parkinson’s disease, Multiple Sclerosis, HIV, and Mood conditions (including depression, anxiety, bi-polar, OCD (Obsessive-Compulsive Disorder) and PTSD (Post-Traumatic Stress Disorder). We plan to continue to expand to other diseases and conditions. Our focus is extending this powerful platform to the thousands of patient communities that will benefit from this concept.”
This is considerably fewer communities than those offered by MedHelp:
http://www.medhelp.org/forums/list
My own experience with PLM is primarily as a visitor to the ALS (amyotrophic lateral sclerosis) community. I have not been a regular visitor for some months, but I found it the experience incredibly moving. There are few diseases that can wreak such physical devastation and emotional turmoil as ALS and it is really is inspiring to be part of a community in which people with increasing levels of disability (many of the members must communicate via various methods of assistive communication technology and indeed much of the discussion offers invaluable insights into the cutting edge of such technologies discussed in very expert ways by those who know all too well the strengths and weaknesses of such devices and services) reach out, often within minutes, to offer practical advice and moral support on the many aspects of a condition that affects everything from the simple act of breathing to how to communicate sans the ability to speak as such or to be able to make much movement whatsoever. This feeling of solidarity and genuine bonding is the core strength of PLM.
At the same time, I was surprised that one PLM member I spoke to seemed surprised when I mentioned the business model, and said, “It’s a business?” And there is a certain, not overly subtle pressure on users to keep their symptom charts updated. After all, no updating, no data for PLM to market to its clients/partners:
http://blog.patientslikeme.com/2008/07/10/patientslikeme-announces-new-partnerships
And some of the members, realizing what a boon PLM is to those who have made good friends on it and who wish the founders well (and given the monumentally important and admirable role the brothers Jamie and Ben Heywood have played in galvanizing research into ALS, who can blame them?), prod their compatriots to update their personal data. But there isn’t much incentive to chart one’s own inexorable decline into greater debility and to expend ever greater amounts of dwindling energy reserves on what on is an inherently demoralizing, depressing activity. There are those on PLM who are eager to regularly update their data so as to further research into ALS and for simple altruistic reasons. Others, though, simply prefer to while away time in the surprisingly joyful, wise-cracking forums and are not motivated to update their symptoms and medication records by offers of PLM T-shirts or appeals to team spirit despite the fact that the web site is so well engineered that updating one’s records is quite easy and takes very little time. This constant need to remind users to update is a problem for PLM in terms of long-term financial viability, one would think.
It will interesting years hence to see if researchers have made use of the PLM data to compare and contrast it with data gleaned from ALS patients who are less wired or who are participating in competing patient communities, (such as that at MedHelp or in a Yahoo group). The PLM group is an interesting case study of a group of people suffering from a horrible neuromuscular disorder who can ask questions of a resident neuroscientist and a nurse and get responses within a day or two. That is a marvelous thing and more power to PLM. MedHelp, while it enables patients to ask physicians questions, has those features basically separated in an “Ask a Doctor” format versus the integration of patient community and expert-patient interactions on a daily basis of PLM.
Why are we covering patient communities on Alt Search Engines? Because more and more, when average people type in the name of disease into a search engine’s box, the results lead them to patient communities. That is a phenomenon that librarians and other information professionals must recognize and harness to their advantage or at least educate themselves about. I was impressed by the sophistication of the discussion of drug therapy regimes and respiratory therapy devices on PLM, for instance, and learned a lot from such forums. And I got to know a remarkable, courageous group of people and made some good friends. That’s quite a selling point for a brand in a competitive environment.
