Reflections and observations on the expatriate experience from an American scientist living and working in the Netherlands.
The clouds rolled in last night; summer turned cold and a drizzling rain closed in across the city. Inside, I watched news of the tragedy roll in from Utoya, equally dark and discouraging, senseless actions and unimaginable losses for the families involved.
There are lots of reasons to think that they should be, but I’m starting to get a bad feeling about this.
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.
I wrapped up meetings in Cambridge and headed to the trains yesterday afternoon – it should have been a quick trip across, but I took a later Eurostar than normal and ended up in Brussels at 10:30. So far, so good (there was a wonderful street fair surging around the station), but only slow trains were still running east to Liege. That, in turn, deposited me 20 km short of Maastricht a half hour after the last train had left. There wasn’t much to do but to hole up in a nearby hotel for the night – fortunately the dearly desk clerk only asked 2/3 the normal price, and threw in breakfast as an apology, saying that I wasn’t really using the room for very long.
I scrambled this morning to make the early train to Maastricht, arriving around the time that my language classes were to have started. 
‘Were to’: the college sent a letter advising me that they were taking a reduced-schedule break in August (not unexpected) and giving me a list of assignments to complete.
With the day rearranged (in my favor, for once), I wandered to the kitchen to make a bit of breakfast, only then finding that the gas had been shut off to the building. Actually, it was wholly disconnected since the Tapas Bar downstairs doesn’t require it and the folks downstairs have moved out. This not only takes down the cooktop but also the hot water, since the apartment has one of the flow-through water heaters. My neighbor had already called the landlord’s son, though, and a small earthmover was in front of the door by noon, pulling up the bricks and moving the sand.
Still, it’s a nice summer day along the river, the streets filled with shoppers and the café’s open, so no complaint. I’ll settle in to catch up with work and enjoy the churchbells.