I understand the argument: a social network can be like an extended support group for patients. They can group with patients who share their problems, understand their issues and feelings, and can trade tips and encouragement. Specialty physicians can be on-hand to advice and counsel, and patient support groups can offer information and resources. Government and institutions get a better sense of the scope and urgency of the problem and it’s impact on ordinary people; family and friends gain perspective and tips for providing supportive care.
And I applaud all of these benefits. I have a chronic, hereditary disease and have joined the support group, read the newsletters, and downloaded from their resource areas. I attended a meeting years ago but really didn’t like it: it seemed like people were letting the problem define their lives rather than use the resources to get past it. Still, I support research and the association’s mission.
But it seems like the inevitable evolution of these things is to provide a forum and resources, then to screen participants and personalize their experiences by collecting data. Eventually, thoughts turn to how to monetize the database, attracting advertisers to offset costs. The value of the data drives the expansion of the database scope and the recruitment of ever more members.
I recently reviewed a startup business plan for a new online site, created by a physician and a young techie. They had created a nice site with all of the usual elements: forums, libraries, surveys, ‘ask the experts’ interactive sessions. But it had been designed from the start with the idea of attracting a million users and a hundred million dollars in revenue.
The result, frankly, was predatory.
Hospitals were being recruited to sign up their patients, paying a subscription fee to retain control of their post-discharge care. Surveys were sponsored by drug companies; patients were encouraged to rate their doctors, hospitals, and treatments. Patients were asked for a wide scope of data, which was digested and served back up to care providers and marketers in return for their subscription fees. Clinical trial researchers were encouraged to troll the forums for enrollment. Text processing engines converted user posts to additional data from the forums.
The physician presented all of this as a way to enhance the patient experience: they would get direct access to information, products, and services tailored to their characteristics and location. But there was no quality control over the forums, neither a physician to assure truthful information nor a moderator to assure that one voice didn’t consume a discussion. There was no buffer between patients and service providers, raising all sorts of conflict-of-interest issues.
I was pretty horrified. This is what becomes of privacy, accuracy, compassion when market forces invade healthcare. The system was absolutely unabashed about it’s goals, absolutely cynical about its users. I can see how the industry could arrive to this model, but I have to hope that it collapses quickly. Discouragingly, though, they are attracting interest and investment.