Your personal health: The Personal Genome
April 24, 2008
Last evening, I had a chance to attend an interesing panel discussion on The Personal Genome. The Symposium featured Eric Lander, George Church, Leena Peltonen and Bill Gates and was moderated by Maynard Olson.
My take away from the discussion, which was fueled by questions submitted by the audience and via the web, was that there is so much uncertainty at this time. We know so much, yet so little. At some level, we do not understand the implications of what we know, ethical and medical, at the same time, we underestimate the ability of our own genetics to withstand changes.
Perhaps one of the things that jumped out at me was the general popular belief (which is hardly surprising) that it is a gene or a few genes that can be altered or fixed to address a “problem”. We’re just beginning to grasp the relevance of pathways, of epigenetics, etc, so the long term implications of what we know (and don’t) are still a little fuzzy.
I didn’t get a chance to record or take notes, but I was Twittering the whole thing. Unfortunately, I forgot to use a hashtag, which was silly. Much of the backchannel discussion was on the subject of designer babies. Leena Peltonen made some good points about the impact of genetic selection (we will not be able to alter germ lines), and whether it was desirable from the evolutionary perspective. George Church pointed out that people were going to do it anyway, much as they do today for sex selection or during IVF.
Bill Gates had an interesting opinion on the question of what a personal genome really means. He differentiated between an individual with money getting themselves genotyped or sequenced and between the ability to sequence individuals cheaply and in large quantities. The latter for him was much more important since it will help advance science and medicine. He is quite right of course, and it will be interesting to see how the ability to sequence individuals cheaply has an impact on research and clinical studies, where, in theory, in a few years it will be possible to just sequence everyone.
More on Sandra Porter’s blog
Image via Wikipedia
Technorati Tags: Personal Genomics, Personal Genetics, Ethics
Your personal health: Crowdsourcing healthcare - Pitfalls and possibilities
March 25, 2008
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: Trusera ready for lift off
February 28, 2008
Trusera, a Seattle-based social health site is getting ready to come out of closed beta. The site will move to an Open Beta next Tuesday at the Health 2.0 conference. That should give the site an influx of users which will make the offering, centered around people sharing their health related experiences and anecdotes that much more useful as network effects come into play.
Credibility and authorship is a big deal in the health space. Trusera seems to have made significant efforts in this area. According to Keith Schorsch, CEO of Trusera, you’ll know the member name, profile information, and reputation behind each piece of content. Each member then will have the option to share their real name. Anonymous content is not allowed on the site and your own network is “invitation only.”
The company is also looking to build a targeted content base by reaching out to personal health activists, with an initial focus on autism and breast cancer. So it appears that the end goal of the service is to have a mix of expert content and individual anecdotes.
If all goes well, the open Trusera.com should be live some time tomorrow with the formal announcement next week.
One can’t help but compare Trusera to iMedix, another site I have reviewed here before, but in my mind the two are different. iMedix is a search engine with social features, while with Trusera, the social part is front and center.
Further reading
Trusera launches invitation-only beta
Technorati Tags: Trusera, Social Networking, Health 2.0
Opening up HealthVault
February 21, 2008
Microsoft seems to be doing a lot of opening up today (just look at TechMeme). And their health offerings seem to be no different. Heck they almost made Fred Trotter choke on his cheerios.
According to Sean Nolan, a very well written post I might add, Microsoft is opening up HealthVault to the development community. This, to me, makes HealthVault viable. The highlights
- The complete HealthVault XML interface protocol specification will be made public
- Developers will be able to reimplement the HealthVault service and run their own versions of the system
- Microsoft will irrevocably promise that we will not make patent claims against you for implementing the specification, subject to the terms of the OSP
- A Java wrapper library under the Microsoft Public License
This is a big deal, especially the part about letting developers re-implement the service. That’s when the service becomes a platform. Smart move by my neighbors from Redmond.
Google, which announced the launch of a pilot health study, also seems to be headed in a similar direction (they’re using GData)
Technorati Tags: Microsoft, HealthVault
Google Health is right around the corner … sort of
February 20, 2008
About time. I am sure Microsoft was getting lonely. The Health 2.0 blog points to a NY Times piece announcing the pilot of Google Health, via a collaboration with the Cleveland Clinic. The service, which will not be available to the general public, will involve 1,500 to 10,000 patients who volunteered to an electronic transfer of their personal health records which will then be retrievable via Google’s service.
The full launch of “Google Health” is some ways in the future, and I will reiterate that in this case, contrary to usual policy, Google is playing it very safe and conservatively. PHRs are risky business due to the potential regulatory implications, and this is uncharted territory for our favorite search giant. We’ll be watching where all this ends up. I am most curious about what the scope of the service will be and what kind of ownership and control people will have over their own data.
Oh yes .. and this is a very very important area for data portability.
UpdateThe Google blog adds some more insight. Google Health will use the GData protocol for information exchange and other existing standards (I presume at some point they will support HL7). The blog goes on to state (emphasis mine)
Cleveland is just the first of many healthcare providers that will securely send medical records and information via Google APIs at your request. We’ve been hard at work collaborating with a number of insurance plans, medical groups, pharmacies and hospitals. While this pilot is open initially to just a few thousand patients, I see it as an important first step to show how Google can help users get access to their medical records and take charge of their health information.
I re-iterate, I like the careful approach Google is taking, but the eventual success lies in open standards (especially given Microsoft’s announced intentions) and transparency at all points. A loss of trust and thing goes down the drain.
Technorati Tags: Google Health
