Getting better: online communities elevate voice of the patient

Article Highlights

  • We’ve bought into a metric that may be more likely to offer false reassurance than meaningful guidance

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  • James Heywood has always kept the voice of the patient at the front of his mind and at the center of his efforts

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  • Industry viewed as villain, yet ultimately responsible for bringing all new medical solutions to the market

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In my last column, I discussed the need for a better way of connecting the discrete healthcare-related problems identified by patients and physicians with solvers who might be able to develop a solution – perhaps an immediate fix, perhaps a longer-term effort.

I’m grateful for the volume of feedback received about this idea, which has included specific suggestions from patients; an introduction by several CEOs to a range relatively-new efforts designed to tackle different key elements of this idea; and a few frustrated entrepreneurs who poignantly describe their struggles trying to change a fairly intransigent system. 

A few observations about some of the online patient communities that I’ve encountered: First, there appear to be a number of patient-support (peer-to-peer) communities, both disease specific and more general.  Several in the general category (e.g. MDJunction, Inspire, HealingWell) seem at least superficially similar; presumably the user experience depends upon the level of participation within a particular patient community.

"All too often, industry seems to be viewed as the villain, yet industry is ultimately responsible for bringing to the market almost all new medical solutions." - David Shaywitz, M.D.Other models seem obviously distinctive: for example, AskaPatient provides fairly detailed patient-submitted reviews of various medications; the prose tends to be a bit less dry than the typical drug label – for example, a recent user of one neuropsychiatric medication reported that “Having an orgasm is like smashing a pimple.  I am not sure if I want to continue taking this drug.”  Yes, think that one over.

HealtheTreatment, a website that explicitly aspires to be the Trip Advisor or Yelp of chronic diseases, solicits and concisely presents patient experiences and ratings, so that you can immediately see, for a particular condition, what therapies other patients have received and how they felt the various treatment options worked for them.  Of course, as Eric Topol emphasizes in his topical new book, “The Creative Destruction of Medicine,” the real challenge is personalizing therapy so you are treating a specific patient, not a population; understanding the breadth of potential responses to a drug doesn’t necessarily provide insight into how you, individually, will respond. 

As I’ve discussed in a number of recent pieces (e.g. here, also this NRDD article with Eric Schadt and Stephen Friend), it would be extremely powerful to link the sort of detailed phenotypic measurements captured by HealtheTreatments with whole genome sequencing and gene expression measures, and then interrogate this coherent dataset with a robust analytic platform; these sorts of efforts are just starting to take off now, and are likely to become table stakes for serious drug discovery in the not-too-distant future.

HealthTap is a website that enables patients to ask questions of physicians, who can earn status points by providing answers with which other physicians agree.  It has received a lot of attention recently, including this recent NYT article by Randall Stross.  (One quick aside: I’m a big fan of Stross – eBoys is a Silicon Valley classic – but I didn’t agree with his critique of HealthTap for not including physician certification.  In general, the certification of healthcare providers [and, I’d suggest, certification more generally] tends to be poorly validated — if validated at all – and rarely associated in any robust or credible way with improved patient outcomes; it also a significant [and underappreciated] source of revenue for the societies and agencies responsible for administration.  It’s understandable that we all want our providers to be well-trained, but it’s unfortunate that we’ve selected, and in many cases, really bought into a metric that may be more likely to offer false reassurance than meaningful guidance.  See this piece I wrote about our “metrics fetish,” and links therein.) 

The ExperienceProject remains my most unexpected finding – it’s essentially a collection of stories, individual narratives, that in some cases are health related, in other cases are not.  It evidently grew out of a support community for multiple sclerosis patients created by a Stanford graduate, and evolved over time into a forum for people to tell their stories – sort of like Robert Coles’ “Literature of Social Reflection” course (or his “The Call of Stories” book) meets Web 2.0.   It’s a fascinating site, which I suspect might offer newly-diagnosed patients an impressionistic overview of a particular condition, though perhaps not an engaged, interactive community of patient-solvers. 

For that, you’d have to go to PatientsLikeMe, one of the earliest patient communities, and still one of the most innovative and forward thinking, as I’ve frequently discussed in this space (e.g. here, here, here, here and here).  It’s focused explicitly on the concept of patient empowerment, and has grown from a site focused specifically on Lou Gehrig’s disease (ALS) into a broader community attracting a greater variety of patients.  The big question has always been whether the PatientsLikeMe model would work for conditions that were serious but not as devastating as ALS; I’m not sure the verdict is in yet, but I tend to root for them, as I feel that founder James Heywood is an ambitious and disruptive thinker who has always kept the voice of the patient at the front of his mind and at the center of his efforts.

Interestingly, one fairly large swatch of white space is the uncaptured input from the millions of patients who contend with illness to the extent they think about it when they are sick or symptomatic, but otherwise aren’t inclined to join patient communities, and are disinclined to define themselves (even in part) through their condition.  We need to find a better way to hear the voices of these patients as well.

If you google “online patient communities,” the first link you get is to this article written by KevinMD (“Social media’s leading physician voice,” according to his website) entitled, “How online patient communities may make money from patient data.”  The gist of the article is that some online communities – including, transparently, PatientsLikeMe — are supported, at least in part, by selling information they collect to industry.  “Patients have to guard against being exploited for profit,” KevinMD advises.

I’d look at this situation somewhat differently (though I absolutely agree on the need for complete transparency): patients may look for many things from an online community – support, understanding, advice.  But for many, I suspect they might also want someone to pay attention to their most important problems, and to focus efforts and resources on solving these.  In other words, if you have a difficult condition, you arguably should hope – fervently — that industry is trying to listen to your voice, trying  to understand your problems, and yes, trying to use this information to make an effective product they can sell for a profit.

All too often, industry seems to be viewed as the villain, yet industry is ultimately responsible for bringing to the market almost all new medical solutions; as Tom Stossel and I have discussed in the WSJ, forward-thinking patient groups dedicated to medical progress get this, and partner with industry in a highly productive fashion, a collaborative relationship that could serve as a model for effective translation in online patient communities as well.

Dr. Shaywitz is an adjunct scholar at AEI.

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