The BBC's Mark Ward reports on a new effort to harness the power of social-networking to the cause of good health. It's interesting to see the UK's National Health Service thinking ahead like this:
Social media could transform the NHS and other public services in the same way that file-sharing changed the music industry, a conference has heard.
Growing use of tools, such as Facebook and Twitter, offered an opportunity to reinvent services, delegates heard.
The MyPublicServices event debated ways to harness these conversations, many of which are critical, to make services better and more inclusive.
If this was not done, many services would be undermined, speakers said.
"It's happened to the music and travel industries and it's going to happen to public services," said Dr Paul Hodgkin, founder of the Patient Opinion site that organised the MyPublicServices conference.
Of course, there's another word for the effort to harness the rapid exchange of information--it's called science, which thrives on an abundance of data, and thrives even more when that data can be usefully analyzed and acted upon.
If everyone's medical history were transparent to science, science would benefit, as scientists would derive knowledge from ever-more-granular awareness of drug interactions--who gets helped, who gets hurt, who gets nothing. Similar data runs would provide great insight into questions of nutrition, fitness, surgical efficacy, and so on.
In a perfect world, medical scientists would have the benefit of knowing every possible data point, about every possible life history, about every possible medical record, and so on. That's the fuel of not only scientific progress, but also engineering and manufacturing progress.
Now of course, there are concerns as well. Most obviously, there are privacy concerns. Nobody has adequately explained how it might be possible to make medical data fully transparent to researchers and yet at the same time, keep that data appropriately opaque to governments, insurance companies, and snoops. Clearly, in a free society, personal information should stay personal, at the discretion of the individual.
On the other hand, as we know from observing social networks, such as Facebook and Twitter, many people can be extremely revealing, to the point of exhibitionism, on their sites. They are happy to part with their own personal information, in return for the most intangible of intangibles, e.g. membership in a group, or a widget for their site.
In addition, researchers are gaining access to other sorts of online sociological/anthropological information; earlier this year, it was revealed that Sony had shared with academic researchers 60 terabytes (1 terabyte = a trillion bytes) of data about players who played Everquest, Sony's massive multiplayer online role-playing game. One might think that somebody would have raised some privacy concerns about such a massive data divulging, but nobody seems to mind--we might suppose that anybody who logs on to such a game has no serious expectation of privacy. In any case, Sony's gift was a huge boon for social science, and perhaps also for science.
So it's possible to imagine similar hauls of information in the future, as researchers scour cyberspace for troves of data. And so the song of curiosity remains the same. For centuries, scientists and collectors have trolled the earth, looking for everything from gold to butterflies to ancient art . More recently, they have gone prospecting for more exotic types resources and also for medical information, in the form of research trials--for a nasty view of these efforts, see John LeCarre's book-turned movie, The Constant Gardener. And so in the future, info collectors could go trolling for something new--information. Obviously ethical guidelines for info-harvesting, like every other kind of harvesting, are needed.
And just as obviously, the cause of knowledge is best served by piling up information into usable formations, databases that are transparent and accessible to as many different users as is technically and ethically possible.
We can thus see that the amassing of information is going to a major political issue, as well as a major social, economic, and scientific project.
We don't need virtual pyramids of information, dead monuments just for show. Nor do we want Potemkin Villiges of phony information, as has been revealed by the data hack at the Climate Research Unit at the University of East Anglia. Nor do we want such knowledge to be housed in distant ivory towers, for the benefit only of an unaccountable elite.
Instead, we need virtual cities of information, in the here and now, where multitudes of people can work and discover. We need for these "infopolises" to be existing right before our eyes, so that we can all participate and assess.
That's one way how the world will become a better place.
I think that building electronic services to support medical care is a great idea, but that's just another reason to run like hell from putting the government in charge of any of it. I'm a professional software developer and I have been for several decades including several incidents involved in working with government institutions (namely courts and universities) I have seen what the government does with these things and here's what we can count on:
ReplyDelete1. Political wrangling over every aspect of the systems from hardware choices to basic software technologies as big companies with big lobbying budgets wrestle to make sure that their favorite products are included. The needs of the users will be ignored since they have no lobbyists.
2. A bloated overly complex and likely useless design will be developed by committees of people who know little or nothing about designing technological systems. Why include such considerations when political pull and money are at stake?
3. Incredibly long delays in getting anything at all deployed as the government hires armies of drones to implement their overly complex systems and then deploys them on a permanent basis to build something that will take years to get anything released.
4. If anything ever gets delivered at all, it will likely be next to useless. Have you ever used any government-produced software? There's a reason for that, and it's not for lack of trying.
5. If a miracle happened and something that was actually usable were to eventually come about through such government activities (or if we were forced to use them by law despite their uselessness or failures) the government would find any such source of information and control over our lives to be an irresistible target for tinkering and the growth of government power. Just as the simple ID number assignment of the original Social Security (and which was legally forbidden to be used for any other purpose) has now invaded every aspect of our lives governmental and otherwise.
More software? Good! Better data collection? Great! Government software and data collection? A disaster.
--Brian
In time, perhaps a lot of time, it will be in peoples' interest to make aspects of their personal health information available to researchers or even insurers (at their choice), including aspects of their genetic makeup. Their are nascent efforts in "massively parallel" genetic research such as in autism - the Interactive Autism Network administered by Kennedy-Krieger comes to mind. However, participation in these efforts is purely voluntary, and the reward is indirect (altruism and early information about potential trials or new therapies). In time, it may be possible to provide more explicit and direct value. Perhaps someone who participates gets higher insurance reimbursement, or even direct payments, to cover their or their child's therapy costs. There are likely to be conditions where genetic predispositions can be offset by treatment, diet, or behavioral actions. Shouldn't people who seek to understand their risks benefit directly if they are more compliant or active in their care, if it is expected to measurably improve outcomes? Another possibility is that predisposition to one condition, for example a type of cancer, may coincide with greater genetic resilience to another, for example heart disease. This makes the individual attractive to insurers seeking to improve their mix of heart disease patients, though they (and the individual) would want greater guarantees of coverage or treatment if they got that cancer. Similarly, pharma makers, driven by new FDA requirements, will have a strong incentive to find and motivate those whose genes signal a strong likelihood of a better result from taking one medication rather than another (e.g. Plavix vs. Effient). In all these possibilities, government's role is most effective in assuring that individuals are not duped into volunteering information, and that there are safeguards around how information is anonymized and managed. However, the sweep of genetic and proteomic discovery will be in favor of the individual. Intermediaries like insurers and government agencies will become less decisive in determining what is of value for an individual to disclose and when. The individual will be at the center of it.
ReplyDelete