Let me start with strongly recommending a new blog I recently discovered: Health Social Networks. While I have written quite a bit about health social networking, I tried to stay away from reviewing specific sites. This blog takes a deep and honest look at the issues and challenges facing them.

A recently posted overview of health social networks notes PatientsLikeMe (PLM) as a potential winner. Unlike most other sites, PLM does not rely on the problematic advertising model. Their monetization approach is collecting and selling clinical data. A new project I am working on prompted me to dig into the subject and consider the opportunities and pitfalls.

So what is this user generated health information worth clinically?

A recent BusinessWeek profile of PatientsLikeMe, takes a look at the site, interviews the patients and discusses the approach. What I found remarkable is putting PLM on par with traditional clinical trials. Consider this quote:

In a development that has caught the worried attention of the medical Establishment, some 250 members of Patients- LikeMe with ALS are testing lithium, a generic drug used to treat mood disorders, with no corporate or academic imprimatur. The patient-run trial was instigated by Humberto Macedo, a 42-year-old systems analyst in Brasilia City, Brazil, diagnosed in March 2007 with ALS, an incurable neurodegenerative disease.

Macedo was confined to a wheelchair, barely able to speak, soon after he was diagnosed. He could still use a computer, though, and he quickly joined the ALS group on PatientsLikeMe. Researching his condition on the Internet, Macedo discovered a report on a small Italian study in which lithium appeared to slow progression of ALS. No company would be willing to finance a confirming trial of a drug that went off patent decades ago, against a disease that strikes only 4 to 8 people per 100,000. So Macedo stepped up, proposing to fellow PatientsLikeMe members that they test it themselves.

In December 2007 he posted a spreadsheet for recording symptoms and vital signs; ALS patients started taking lithium daily and documenting their results. The number of participants in the test quickly reached 250, more than five times as many as in the Italian study. Few doctors are willing to accept the results, nor would any medical journal publish them, since the trial does not meet rigorous scientific standards. "But we can't count on medical experts to get interested in ALS, and we don't have any time to lose," Macedo says via e-mail. "At least we have tried something to help ourselves."

First of all, let me say that I truly believe in the use of health social networks to offer emotional support. Just as in the right of patients to try whatever they feel may be best for them. Especially when we are talking about terminal and undertreated diseases like ALS. I am in favor of anything that can help bring hope to those who need it most. Still, I question the scientific value of the results.

Why are the legitimate clinical trials called "double-blind"?

The challenge of any medical research project is designing the experiment in a way that minimizes biases in the data. The bias is introduced because of the placebo effect, which is a fancy way of saying that when patients and/or researchers know they are using an experimental therapy, they might report subjective improvements based on their belief in the treatment. There is nothing wrong with placebo as far as it increases patients' well-being. However its presence completely invalidates the scientific value of the finding.

Social networks, such as PatientsLikeMe function as a placebo!

Think about it, the very nature of their role in providing social and emotional support runs into conflict with the alternative goal of generating dispassionate scientific results. Patients often complain (rightly so!) about how disengaged are the clinicians from their troubles. A circle of like-minded sufferers is a major attraction of patient communities. However, this emotional influence has a negative effect once we start making sense of self-reported data.

If we consider commercial influences it gets even more complicated

Most of these patient communities are open for people to join and require minimum (if any) verification. At some point, once they reach the tipping point in their influence, drug and device manufacturers will start paying real attention and would want to influence the perceptions. Imagine they encourage patients who have success with their drug to go online and share their experiences. Imagine some unscrupulous marketers go ahead and create fake but well-masked accounts, promoting the therapies. Would you still believe the data?

Consider even more insidious cases. Suppose there is therapy that may really work. Suppose it is an OTC treatment or supplement that has not undergone an extensive clinical trial. Suppose manufacturer is promoting it online, but is met with skepticism. Should patients accept the claims? Should they reject them out of hand? Should they run (unscientific) trial and accept the results? Should they NOT run such a trial and take on blind faith the value or lack thereof of the therapy?

Conflicting reports may leave you not knowing who to believe

Does this mean patients should stop talking to each other? Of course not! Does it mean there is no value in emotional support? Sure there is! Does this mean drug makers and clinical researchers will take results of patient-run clinical trials seriously and start rewarding the sites that produce them with big dollars? While many might be interested in basic experimentation, somehow I doubt they are taking the results at face value. Anecdotal and biased evidence may offer researchers a few clues. But it would produce more noise than signal and may even mislead.

This is the Achilles heel in business model of PLM s of the world

To attract patients, these social networks have to go all the way towards turning them communities that provide genuine emotional support. This support in turn taints the clinical significance of research generated through self-reporting. The value of PatientsLikeMe as a business rests on the value of this data. Few people care about such issues now, as most patients, physicians and researchers are still getting their arms around trying to understand this crowdsourced research. BUT, as soon as PLM decides to become a real business and monetize the data on consistent and repeatable basis, it will likely find that pharmas do not value it much.

Digg shows how Wisdom of the Crowd can go out of fashion

Just two years ago, the same BusinessWeek published a glowing profile of the biggest social news aggregator. The idea of site users deciding what is news and merits being on the front page was hailed as revolutionary. Potential of the wisdom of the crowd seemed limitless. Wild speculation about the value, put the founder's paper net worth at $60 millions, attracting ridicule from cooler heads.

Fast forward to today. Few people still believe Digg crowd generates much wisdom, in fact users keep getting more and more annoyed at a handful of crowd manipulators. Revenues are coming in well below expectations, potential acquirers took a pass and BusinessWeek is publishing an expose. A BW commenter explains why Google decided not to buy Digg after taking a deeper look and realizing how easily corruptible is the output of the crowd.

Will "patient wisdom" sites stumble and follow Digg's path?

While I hope and believe that patients will keep finding the opportunities to help each other, I wonder whether selling questionable clinical data could provide a long term path to viability for sites like PLM. To plan and make predictions it is important to consider the world as it really is and not just as we would like it t be:

To put things in perspective I would leave you with a South Park quote:

Stan: Look, everybody, we're all looking for answer, you know. We all want to understand who we are and where we come from, but... soemtimes we want to know the answers so badly that we... believe just about anything.

Good news is patient peer support will grow and medical research will keep advancing, whether or not the current crop of sites can make it.