Thomas Goetz writes a wonderful article in the NY Times about Practicing Patients, where he talks about PatientsLikeMe. Like Trusera and to a lesser extent iMedix, PatientsLikeMe allows people to connect with other people, learn from their experiences and make informed decisions about their health. I think by now all of us Google our health conditions, almost using the web as a second opinion. That’s mostly a good thing.
The reason I liked Thomas’ article is that he also points out some of the pitfalls. There is a lot of data, not all scrubbed for reliability, and tons of anecdotal information, not all of which can be processed and correlated by the human mind, even less so one not trained to look at those data. Are we going to be in a situation where we will essentially make our physicians lives miserables by constantly second guessing them, or will we end up in a situation where physicians keep on top of things because our own expectations are raised because of our own knowledge?
PatientsLikeMe is rather interesting since they taken a quantitative and analytical approach to the social health space and everyone knows I have a soft spot for quantitative analysis. Given that and the ability to compare dosages, etc (i.e. going beyong anecdotal information), I am very curious about long term statistics and what kind of data mining potential is there and what consumers think about that.
One thing is clear – the train has left the station. Whether it be personal genetics, or social health, our efforts must focus on consumer education, consumer privacy and perhaps most of all data ownership. Who owns the data? That is the most important question. As has been said before in these parts, we essentially need some sort of license for personal health information that establishes ownership with the person whom the data belongs to, i.e. you or I and who has access and under what circumstances. That’s where education comes in. We need access to a lot of patient information and genetic profiles for personalized medicine to be successful. So the health community and consumers need to work together to ensure that we can be successful scientifically and as a society.
The second aspect is the underlying data. Just from the healthcare perspective, and the quantitative approach taken by PatientsLikeMe only enables that, there is a lot of useful information that can be used to improve how we get treated. If we can figure out some of the issues described above, there is value here that goes beyond finding out what our peers think.
Further reading:
Thomas’ comments on the article
Open Access News
George Laszlo on Patient (Self) Recruitment
Technorati Tags: PatientsLikeMe, HealthCare, Personal Health
Your personal health: Crowdsourcing healthcare – Pitfalls and possibilities
Thomas Goetz writes a wonderful article in the NY Times about Practicing Patients, where he talks about PatientsLikeMe. Like Trusera and to a lesser extent iMedix, PatientsLikeMe allows people to connect with other people, learn from their experiences and make informed decisions about their health. I think by now all of us Google our health conditions, almost using the web as a second opinion. That’s mostly a good thing.
The reason I liked Thomas’ article is that he also points out some of the pitfalls. There is a lot of data, not all scrubbed for reliability, and tons of anecdotal information, not all of which can be processed and correlated by the human mind, even less so one not trained to look at those data. Are we going to be in a situation where we will essentially make our physicians lives miserables by constantly second guessing them, or will we end up in a situation where physicians keep on top of things because our own expectations are raised because of our own knowledge?
PatientsLikeMe is rather interesting since they taken a quantitative and analytical approach to the social health space and everyone knows I have a soft spot for quantitative analysis. Given that and the ability to compare dosages, etc (i.e. going beyong anecdotal information), I am very curious about long term statistics and what kind of data mining potential is there and what consumers think about that.
One thing is clear – the train has left the station. Whether it be personal genetics, or social health, our efforts must focus on consumer education, consumer privacy and perhaps most of all data ownership. Who owns the data? That is the most important question. As has been said before in these parts, we essentially need some sort of license for personal health information that establishes ownership with the person whom the data belongs to, i.e. you or I and who has access and under what circumstances. That’s where education comes in. We need access to a lot of patient information and genetic profiles for personalized medicine to be successful. So the health community and consumers need to work together to ensure that we can be successful scientifically and as a society.
The second aspect is the underlying data. Just from the healthcare perspective, and the quantitative approach taken by PatientsLikeMe only enables that, there is a lot of useful information that can be used to improve how we get treated. If we can figure out some of the issues described above, there is value here that goes beyond finding out what our peers think.
Further reading:
Thomas’ comments on the article
Open Access News
George Laszlo on Patient (Self) Recruitment
Technorati Tags: PatientsLikeMe, HealthCare, Personal Health