Making My Personal Health Record Public

I went to Google Health last night and completed my profile and then I looked for the link to make it public. It wasn’t there. So I twittered that I didn’t understand why I couldn’t make my personal health record public. People thought I was joking, so I twittered back that I was serious. Then I shut down, put Josh to bed, and called the day quits.

When I woke up this morning I saw quite a few replies on twitter with reasons I wouldn’t want to make my personal health record public. Here are some of them.


  @fredwilson Isn’t that against HIPAA?  I agree w/open source & transparency but I think health care draws the line re: privacy


  @fredwilson As a rich guy who can afford whatever insurance you like, nothing at all.  Folks middle class down to lower class can get ro
yally screwed.



  @fredwilson posts such huge returns that LP’s would forgive him even if he had a fatal disease that would prevent living out a funds 10yr


  @fredwilson see Gattica (circa 1997) for what you could potentially lose by making your medical record public.


  @fredwilson absolutely Fred…98% of the people have no reason to be up tight about this stuff


  @fredwilson Want to stream your DNA sequencing, eh?


  @fredwilson But what if your public medical record indicated a condition which would make insurance companies not want to touch you?

OK. There are some damn good reasons why you wouldn’t want to share your personal medical record and many of them have to do with insurance and "hiding" conditions from the insurance companies that would make you uninsurable. Well I personally find the whole idea of hiding medical conditions from anyone (investors, loved ones, insurance companies) problematic.

Wouldn’t we all be better off with an insurance system that wasn’t able to discriminate between people based on pre-existing conditions? Wouldn’t we be better off if we came together to insure everyone? Wouldn’t we be better off if we knew everyone’s medical conditions and what treatments worked and what did not? Wouldn’t we be better off if we could search for others with the same conditions to share our experiences?

James argues that the lessons of open source and transparency just don’t extend to health care. I am not so sure. And I would like a share link on my google health record. I am not saying it should be required. I get that not everyone wants to share stuff like this. But I do.

#VC & Technology

Comments (Archived):

  1. Alexandros

    Hello Fred,I am a new reader to your blog and I read it because I was expecting some intresting materian on VC and the state of the internet. That you would start processing the exact topic my mind is on overdrive about the last few days (transparency, what is really stopping us anyway) I did not expect. So I am definitely staying with your feed. Do you have any idea where where I can find more discussion on this topic?

    1. fredwilson

      which topic? transparency in general or in health care?

      1. Alexandros

        Transparency in general

        1. wanderingstan

          The best and most thorough discussion of transparency and privacy is David Brin’s “The Transparent Society”. I highly recommend it.

          1. fredwilson

            thanks stan, i am going to get it. alexandros – you should too

          2. Alexandros

            thanks stan, thanks fred. Humans are the best search engine after all 🙂

          3. gregory

            a good yogi knows your entire history, health, mind … just by lookingthe privacy we have had up til now has been something like the privacy an ostrich has when its head is in the sand, but many of our secrets and habits are right there on the face for all the world to see, often, everybody but us…

          4. fredwilson

            I think that’s very true. Reminds me of my former partner Jerry would could always see what was behind the eyesfred

  2. lance

    Democrats out of my wallet, Republicans out of my bedroom, and Google out of my personal data. I don’t trust them.

    1. fredwilson

      you don’t have to fortunately. it’s an opt in system.

  3. sdelmont

    If the 98% of the people @rghanbari talks about make their health info public, the remaining 2% with “problems” become as painfully obvious as a metastatic melanoma on your face.Something as sensitive and life-altering (besides the obvious alteration to your life by disease itself) as your health info should not be easily shareable. Not because you should be forced to hide it, but because to make it easy to hide for those who neeed to, you need to make it hard to disclose for everyone else.

    1. Guest

      Excellent point, Sebastian. In the same vein: what about people who suddenly stop disclosing their profile… wouldn’t it also be an obvious “sign”. I also agree with other posters who stressed that (1) anonymous sharing of information would help doctor / science advance faster in finding cures or early detection methods, and (2) selective and “on demand” sharing of information would permit “data portability” of once health history to different physicians. In case of emergencies, it could be handy to have third parties be able to get access to your health info to cure you (obviously, the “who can see what and when” part of this would be most tricky).

  4. Myrne Stol

    You’re ahead of the curve.

  5. jdbradford

    I think that this demostrates the fundamental model that the US has taken to a (closed) healthcare system – which is considered the best in the world – but also the most expensive. Until there is some form of meaningful compulsory baseline public healthcare (and therefore additional tax), it will be very difficult to create a market where individuals effectively cross insure themselves and not be fearful of pre-existing conditions – which is much more common in Europe.

  6. jedc

    “Wouldn’t we be better off if we knew everyone’s medical conditions and what treatments worked and what did not?”I think this could be a powerful idea. Enable people to share their health data, anonymized to some extent, and let doctors/experts/statisticians sort through the results. Even if just a fraction of the people with Google Health records enabled that, it could allow for a wealth of really interesting analysis.I personally love that I don’t have to worry about carrying my medical records from doctor to doctor. For that matter, that’d I’ve have access to my medical records! (I had to copy six years’ worth of my Navy medical records before I left; they’re now inaccessible in a Navy storage facility.)

    1. DanInCambridge

      There are a few companies already doing that, though through agreements with hospitals to use their information infrastructure. No need to introduce errors associated with people entering there own health information.

      1. jedc

        From what it looks like, Google has the potential to take this effort to an entirely new level. Even if people make errors entering their own information, with a significantly larger database the overall effect should be minimal.Plus, in the cases where people go to hospitals outside that siloed information infrastructure it can still be captured.

  7. Dan Cornish

    Hiring decisions are also affected. If you have a gene for cancer in your family, I might not hire you because of increased insurance costs and or because I do not want to invest time and money in an employee who might miss a lot of work. Would you invest in a company where the CEO has a family history of mental disease or some other medical issue? This opens up all sorts of very important ethical issues. If you open your medical history to the world, then you might expect that you could become a second class citizen due to something out of your control. Society has for a very long time valued privacy in medical records for a very good reason.

    1. fredwilson

      dan – see my comment above about the CEO who died. it was a very painful lesson about this issue

      1. Jack

        Your CEO story is so self-serving. Painful, yes, but anything can happen to anyone at any time. Indeed, there are increased risk factors, but using this argument you would not hire a black CEO because his/her incidence of hypertension is quite a bit higher than the average white person. Would you? I was born and raised in Europe (now living in the US) and the whole pre-existing concept is nothing but legal discrimination against sick and unhealthy people (for whom healths insurance is a life and dead issue). And what is most puzzling is that most Americans seem to think all this is just fine. I suggest the US looks at what Taiwan has done with their health system. I also suggest voting Democrat. My 2 cents.

  8. AP

    Yes Fred. Completely agree with you…

  9. J.D. Falk

    The default, obviously, should be privacy. That should always be the default state, and for that I agree with the people who’re concerned about their privacy.But after the default is considered, it doesn’t make any sense to prevent some people from being public if they knowingly choose to do so. And then, protect that choice: why not an Attribution-NonCommercial-ShareAlike license on my life?

    1. fredwilson

      that’s my point JD

  10. Tom O'Brien

    Hi Fred:Well you could publish your PHR here – but most people (rationally) don’t want to do this. If we lived in a world where there was no discrimination – then this wouldn’t be an issue.For example, have you ever been treated for a psychiatric condition? If so – my guess is that you would not be so keen to share the records.TO’B

    1. fredwilson

      i was very fearful of flying ten years ago. i worked with a therapist and overcame most of my fears. i’ve posted about the value of therapy before and talked about my personal experiences with it. but i understand that most would not want to talk about such matters.

  11. JEiden

    This reason why sharing my health records is not just because of insurance implications (ways for them to find pre-existing conditions), but with identity theft risk being so high, someone can copy your health records and walk into a hospital posing as you to get service.Identity and insurance coverage risk aside, good health needs to come first for everyone. You can’t do much if you are not healthy, and your health is your life. The way our pop culture is so obsessed with pop-culture and how they stalk celebrities, I could see Britney Spears, Paris Hilton, etc health status dragged all over the media. Instead of Paris Hilton sex tapes, you’d see internet banner ads urging people to view the latest celebrity broken bone x-ray from a car accident or ski accident.When you lose your identity, you lose your individuality. Putting your health records out there for everyone to see diminishes your individuality.

  12. andyswan

    Hiding a pre-existing condition from an insurance company is stealing from the insurance company and everyone that contributes to the pool.

    1. hdunn2

      I think the issue has more to do with hiding pre-existing conditions from employers who might use the information to discriminate.

    2. Josh Fraser

      Is it unethical to lie and steal? Yes. Unfortunately the whole health care system in America is so broken that many people are left with no other choice.Insurance companies are placed with an unbelievable conflict of interests. As public companies their responsibility is to maximize profits for their shareholders. And the only way to maximize profits is to deny service to the people who need it most. As a result, 47 million Americans are uninsured. This is in spite of the fact that we spend more money on health care than other industrialized nations.Fred, as a self-admitted idealist, I’m curious why do you think the best solution is to “insure everyone”. Isn’t the insurance system fundamentally flawed? Wouldn’t we be better off to join the rest of the modern world by providing universal health care to everyone?

      1. andyswan

        Before we get into Universal Healthcare, I would like to encourage everyone who supports it to tell us exactly which Government agency is so efficient and provides such high-quality service that you are inspired to seek the same level of competence in your health-care?

        1. Josh Young

          http://www.washingtonmonthl…”If the 45 million uninsured Americans could be transitioned into a VA-style system, they would literally be getting the best care anywhere.”

        2. Ari

          Personally, I would opt for private healthcare, unless I couldn’t afford it, in which case, I would happily accept whatever for of healthcare was provided – assuming it was more reliable than homeopathic solutions or voodoo.

  13. Judi Sohn

    A couple of weeks ago, GINA (Genetic Information Nondiscrimination Act) passed both the US House & Senate and it is expected to be signed into law by President Bush tomorrow (May 21). This law will protect Americans from being discriminated against due to genetic information. For more on the implications of this new law, you can visit

  14. alan shimel

    Fred – in a perfect world where the insurance companies could not discriminate against us you are right there would not be an institutional prejudice against making your health records available. However, we don’t live in such a world. Not now anyhow. On top of this though your argument reminds me of the people who say it is OK to let the government trample our privacy rights because if we live a “good life” we have nothing to hide anyway. I think our right to privacy is inherent. Thank god you are healthy (I assume). I really wonder if you had any health issues if that would change your views on this. Lets hope you don’t have to face that question.BTW, your Disqus comment system is not working in my Firefox 3 RC1 browser, had to go to IE for this.

    1. slowblogger

      At the moment, I am not seeing any comment at all from the AVC blog. I don’t think this is intended, is it?

  15. tim

    re: HIPPAHIPPA covers organizations that store or process customers health information – you as a individual and owner of the data can do anything you darn well wish with it.Why I understand that you are looking for a health care system that doesn’t discriminate – the fact is that we have one today so making your health information known could have unintended consequences that you may not be aware inside or even outside the health care system. For example: flying to a foreign country and they look up your information on the internet and discover you have something that could place a burden on their health care system (e.g. cancer). They could deny you access (this is happening today – canada sometimes does internet searches on names at checkpoints and have denied access to people trying to cross the border).Saying that – there is nothing to preventing you from sharing your data. E-mail it, twitter a link to a webpage, post it on your blog, print it out and bring it with you on vacation. But google as a company doesn’t have to offer it.

  16. Kydroon

    Hello Fred,1st quote: “Wouldn’t we be better off if we knew everyone’s medical conditions and what treatments worked and what did not?”2nd quote: ” Wouldn’t we be better off if we could search for others with the same conditions to share our experiences?”My question: who exactly do YOU mean with the second “we” in both quotations? As a matter of fact, we do not live in a perfect world and most people do not care much about the impact of their actions on the “personal utility” of others as long, as they are able to raise their utility.The Italian government recently had a simila “great” idea to open up all personal income tax statements for the public. Fortunately the figured out, that the idea could benefit from further rethinking.True privacy is perhaps one of the greatest achievements of an open society (as defined by Karl Popper). Unfortunately there is a strong move to extinguish any kind of privacy. So in future “we” will be able to look into all other heads. I am sure “we” will then agree, that some ill cells of the community have to be take out.For me this is not a good outlook!

    1. Ari

      I heartily agree. Excellent points and fantastic reference of Popper.

  17. Adrian Heilbut

    Letting patients easily share their records would also blow open the bizarre lack of transparency around clinical trials. Unfortunately, economic interests are often in conflict with good science, and all too often trial results get spun in questionable ways or suppressed (ie. Merck/Vioxx, Lilly/Zyprexa, etc. etc, etc.) The availability of raw data would both enable third-party analysis and verification, and also simply pose the threat of such scrutiny, which would lead to better science.Some of this sort of data can be valuable, and there should be be ways to allow the patients to potentially get paid for sharing data, as well as mechanisms to enforce some restrictions and time embargoes (ie. you don’t want some hedge fund analyzing your clinical trial before you get a chance to).I don’t think everyone needs to share everything, and it may be a good idea for most or all data to be anonymized. The key is giving ownership and control of all data back to patients, to whom it belongs, and the letting them decide what is shared and to whom.There’s some interesting stuff going on with patients sharing their data at – also see Thomas Goetz’s article in the NYT and

  18. ashimmy

    Fred – thinking further about this I was moved to respond on my blog. My response is at: http://www.stillsecureafter

    1. fredwilson

      i left a comment on your post. good discussion.

  19. zachlandes

    The problem with private data and the internet is that once its out there, its out there. And the further problem with sharing health information is this is vitally important information – you may not care what forces of good or evil analyze your opinions on the L.A. Cupcake Challenge, but when it comes to vital information like health, who knows what use can be made of it to affect your life? Would you release your home address and the blueprints to your home on a popular blog in the interest of transparency? How about the security system codes? This may seem an extreme comparison, but the real point here is that some data can be used AGAINST you. And when it comes to health, who can afford the risk?

  20. muratcannoyan

    Personal control is the key. Soon, we’ll be incented to share our personal health records.

  21. Alexandros

    A slight contribution to the discussion unfoldingI think it is important to differentiate authentication information, location information and activity/history information in terms of transparency. Authentication info (passwords, security codes etc) is only meaningful when secret. I do not think anyone is advocating the transparency of these.Also location information (where I am right now) may also be dangerous in the sense that any lunatic may cause irreversible bodily harm for any trivial reason. On the other hand publicising location information may save your life in case of emergency and also any sufficiently motivated maniac could find Fred’s house/location with enough effort since his name is published.However the argument for not disclosing history/activity information is much more difficult to make and a lot of it is based on vicious cycle type arguments that have the current state of society as a starting point. To me, the more intresting arguments are those where the concept of transparency itself is attacked, regardless of current state.

  22. howardlindzon

    never happening. too many awful stigmas associated with all the restless leg drugs and leakage pills I take.I shouldnt kid becauze people suffer from this, but in reality brain drugs are so prevalent and srs drugs so widely used and unaccepted that it would lead to a new kind of problem, discrimination against certain health problems.nice thought though fred chopra

  23. Jeff

    as for sharing our health experiences, I think that’s a great idea. I’d love to find other people who have had similar medical experiences. A good friend of mine, for example, has Crohn’s Disease and I KNOW he would be all for finding others who have the disease as well, given it’s such a “secret” thing with so many people. That said, sharing can be done without knowing the specific person. You could elect to make your health record public, but on an anonymous level. You could send anonymous messages. So even though you don’t know you’re talking to Fred from NYC, you’re still making a valuable connection.

  24. andrewbadera

    Yes, open health would be a wonderful thing.As much as I know you love Microsoft, Fred, are you familiar with HealthVault’s sharing feature?

    1. fredwilson

      no, but i will go check it out later. thanks for the suggestion

      1. andrewbadera

        It seems pretty well thought out. Decent granularity when it comes to how much, or what, you share.

  25. Doug Kersten

    Generally, I think sharing your medical records is a bad idea, except between doctors and family or if personally identifying information is removed from the records. Of course, doctors will charge you to obtain your medical records from them if you want to go to another doctor. This, I think, is a travesty. As Andrew Parker said, check out Gattica. I don’t think the concept of the movie is that far fetched at all. There have been plenty of times in history when the stigma of a disease has caused the individuals with it a great deal of difficulty. Just look at AIDS for a recent example.The problem comes when everyone else is sharing their information and I don’t want to. Whether it is because I want privacy or I have one of the diseases that no one wants to be around. If everyone is sharing and I don’t then I must ‘have something’. It is the same logic that flows around lie detectors. If I don’t take a lie detector test I must be guilty.I also would not make my medical record public, for one reason, because if I were applying for a job and I had a disease or difficulty that was completely under control and I was able to perform the jobs duties but I was up against a candidate that did not I believe that the other candidate, all things being equal, would have a leg up. This is unfortunate but it is the world that we live in. You could say that I probably wouldn’t want to work at a place like that anyway but if that job is all that’s out there and is the difference between living on the street and having a house over your family’s head then it is a job I would be happy to have. I think that saying I am doing this to be dishonest is not quite correct either. I look at it like my medical records are a thing of value. I protect them and only allow access to them to individuals I trust. Just like I only allow individuals that I trust into my home. Everyone should try replacing medical record with bank account and see how they feel about it.- Doug K.

    1. Nate Westheimer

      Gattica was a great movie. But my question is: how does medical information differ from other information? If you know what movies I like — Netflix — can’t you build some sort of psychographic profile of me an discriminate just the same… no?

      1. Doug Kersten

        When is the last time you heard of someone not getting a job or insurancebased on the movie that they watched? Although you may be right in somerespects because the insurance companies are now using your credit report todiscriminate against you when you want car insurance.If you believe in the right to anonymity, as I do, then you should have aproblem when any information about you is shared without your permission.It is one of the negative things that the Internet has brought with it. Ialso see myself giving up that right and in some cases it being taken away.

  26. pierreloic

    Xconomy just wrote this morning about a partnership announced between a Boston hospital and Google Health, the first of its kind: quote Beth Israel’s CIO, John Halamka, “We believe that patients should be the stewards of their own data”.As your post shows, healthcare is not immune to the debates over the control of online data. I co-authored a post on this a few weeks back:

  27. Brian

    Fred,I think you are underestimating how many smart people are trying to find solutions to the insurance system every day and how hard a problem it is. However, just quickly, not everyone would be better off with an insurance system that didn’t discriminate. There are some people who pay a much higher portion of their income to the insurance pool, they would be worse off by adding more people with pre-existing conditions at the same price as them. I do agree that some form of insurance to everyone would be an improvement, but I don’t think its fair that people who pay (with their time and energy) to eat right and exercise should also pay the same number of dollars into the insurance pool when they are clearly lower risk (by not being obese or having high cholesterol, etc).As for knowing everyone’s conditions and being able to share experiences, there already exist anonymous and non-anonymous support groups online and in the real world for just about every condition where people are disturbed (not the right word) enough that they seek support. I’m saying that there already exists a robust opt-in system for discussing various conditions.B

  28. Health Guy

    You want to be the guy who issues insurance to someone who has already been diagnosed with cancer? Think that kind of “pre-existing condition” makes for a good business model?If you want to share your data, fine. But dont make arguements that make no sense. And overall, Google Health is laughable. There is nothing new here re:technology, nothing compelling for users re: value proposition, and overall very unimpressive. I think there are something like 50 existing PHR applications just as lousy.

  29. John Boyd

    I’m not sure there are benefits that outweigh the disadvantages of making your personal medical records public, although encouraging individuals to anonymously release their information could create pools of data that would help science.Even for “private” online medical data, there are many issues. There are medical records (e.g., when you last had strep) and medical data (e.g., your genes). We’ll need solid regulations regarding privacy to avoid people becoming uninsurable based on the unauthorized release of private medical info- this is a growing concern with electronic records and companies who will screen your genes by mail (check out We want to encourage people to get such tests to allow any preventative measures (and otherwise plan) so we should ensure obtaining such information is not penalized. In the end, one high helicopter solution would be diseases based on the genetic makeup of a person (or otherwise not in their control) are covered by gov’t care, while preventive illnesses still covered by private healthcare.

  30. mclarke

    > Wouldn’t we all be better off with an insurance system that wasn’t able to discriminate between people based on pre-existing conditions? Wouldn’t we be better off if we came together to insure everyone? Wouldn’t we be better off if we knew everyone’s medical conditions and what treatments worked and what did not? Wouldn’t we be better off if we could search for others with the same conditions to share our experiences?Fred, you’re such an idealist…

    1. fredwilson

      Yes, I plead guilty as charged

  31. gregory

    from the book above … The Transparent Society: Will Technology Force Us to Choose Between Privacy and Freedom? (Paperback)it wont be technology, it will be people

  32. JEiden

    One thing I do need to add. In the transportation inductry, health records are a Federal Requirement. The Federal Governemtn requires truck drivers to have cholesterol and drug tests as well as a stress test on their back to see if they can carry a certain amount of wait. State laws then vary from there.The reason for Cholesterol test? They don’t want a truck driver having a heart attack at 55 mph and taking out a bridge and causing a lot of injury and possible death to other motorists, to to mention the damaged caused.But that is a direct public safety rule, just like Pilots are required to have certain tests. But that is between the vehicle operator, the employer/insurance company and the Gov’t.

  33. chernevik

    1. A norm of healthy privacy is (at a minimum) strongly reinforced by a norm of nondisclosure. Most people are generally healthy and stand to gain professionally by disclosing. But if they do, the presumption becomes that those that don’t are hiding something.2. We need a norm of health privacy so people can make medical decisions solely to improve their health. If they know they will be expected to disclose the results of a test or examination, they may avoid care, even in spite of warning signs. People already have denial about health problems — if discovering a problem has professional implications, that’s one more excuse for ignoring it.3. Health privacy reinforces general privacy. Privacy helps individuals follow their own course and think for themselves, apart from community norms and requirements. And it is a powerful protection against government, which is always and everywhere potentially too powerful. I don’t think we can have a free society without privacy, and we ought to protect it zealously. Even if you’re right that it would be economically beneficial, I don’t think those benefits outweigh the social and political costs.4. Anyway, I’m not really sure disclosure really helps you that much. Anyone with known serious health problems is probably focused on those in the first place. Hopefully, you’re dealing with people with such integrity that they have already thought about what happens to their partners, employees and customers if a known issue blows up on them. If they trust their partners, and truly care for their business, I would think they would at some point make the issue known.In the case you mentioned, disclosure wouldn’t have helped, as your partner presumably didn’t know of their risks. You did ask for disclosure, after a fashion (“certify you are healthy enough to insure”), and then waived the requirement. If you are saying that due diligence ought to have greater attention to medical risks and succession issues than it does generally, that’s probably true — but a norm of general disclosure isn’t the only way to address that.Finally, I understand that you are talking about individual decisions, rather than law — but the norms that guide those individual choices are as important to how we live as the laws we are compelled to obey. And over time, those norms guide the development of the law. You are, of course, free to disclose whatever you like — but I think it’s better for everyone if you don’t.

  34. douglas

    Will you still want to make it public when it includes your DNA sequence?And is there a concern about setting a personal-health-openness context that punishes people with diseases? If health information becomes public information, shouldn’t insurance companies use that information to decide who to offer insurance too, and implicitly punish (with higher rates) those who do not make their info public?

  35. hdunn2

    While my personal feeling is that sharing medical records is taking the idea of transparency a bit far, I think there is one argument that is being used that might actually be the opposite of what the reality might be. Some people are arguing that sharing medical records might lead to discrimination, but I think if people (in large amounts) adopt this idea of sharing records, discrimination might actually DECREASE after people begin to recognize the wide spread nature of certain disabilities (especially in the psychological realm).

  36. markslater

    Fred -here is a book i read about a bankers view of how technology can fix health care -…It may be a bit dated now, but was interesting reading to a healthcare novice like me

  37. yucky diseases

    You clearly don’t have hemorrhoids.

  38. heyjudeseattle

    “Wouldn’t we be better off if we knew everyone’s medical conditions and what treatments worked and what did not?We’ve created an online health network that allows enables people to share/find health experience that works. The idea is to create exactly the world that you describe: people that have “been there” sharing with someone who could be.To address the current reality of insurance discrimination, we make it optional as to whether or not you use your real name.We are currently invitation-only. If you follow this link invitation will automatically be created for you:…We’d love your thoughts and experience! Jude

  39. bperu

    what about your anal warts?

    1. Emre Sokullu

      I understand this concern, but ideally, the society should come to a point where no one would mind and/or tease that. That’s a step that we should take sooner or later. I know it’s not feasible in the short-term, but it should start from somewhere.

  40. kyle

    Hi, Fred -Good stuff, but I don’t necessarily think you need to open up transparency that far. Prior to moving to the valley, I was working on some very interesting projects in conjunction with some european companies. One of the interesting things these companies were doing was working with european governments who had already implemented national online personal health records to allow doctors to tap into the PHR’s anonymously to run simulations of potential treatments for their patients based on based on the experience of other “patients like me”.I think just getting that far would be a huge step. Hopefully we’ll see that type of coordination coming out of Google (I have a bias against MS for this type of information, but their HealthVault product is interesting).Anyway, I completely agree with you that, if I want to share my information publicly, I should be allowed to do so. In the end, it’s all about giving the patient control and giving them access to information to empower to make the best decisions possible about their health.

  41. slowblogger

    I have written a post about the insurance issue.…Thank you for the inspiration.

  42. Ari

    No offense meant, because I don’t know you, but if you can’t discriminate between the relative wisdom of sharing important information from loved ones vs. sharing information that could (though perhaps not specifically in your case) make companies that you do business with (i.e. those from which you buy medical insurance) have a reason to charge you more money, then I really have very little respect for your capacity for making sound financial judgments.

  43. Tom Stitt

    John Halamka, the CIO at Harvard Medical School/Beth Israel Deaconess Medical Center (an MD and uber geek) posted his personal medical record on his blog – http://geekdoctor.blogspot…. – a while back. John could advise you on the best approach to disclosure. His reason for disclosing was to demonstrate the chaos present in most medical records. As I recall, your healthcare providers may also ask you to sign a HIPAA waiver though it should not apply since you, not they, would be releasing the records (you are not a healthcare provider – HIPAA doesn’t apply to you.) Assuming your medical data is unstructured (does not follow the new guidelines for EHR) and contains electronic and paper records, it may take a while for you to compile. If you have never read doctor notes in your medical records, I’d read before you disclose – doc notes and transcripts can be scary/cryptic. I’d also check carefully to insure there are no inadvertent references to your family members, family history or any mental health issues.

  44. Nathan Lanier

    The magic and the dream of Google Health is this: Efficiency.As it stands, folks have their medical records stored in various formats in various locations in various specialties. This leads to IN-efficiency. With Google Health, you can keep all of your information in a central location that is accessible to anyone from anywhere. To anyone who has been dealt a tough blow medically, this prospect is an absolute dream come true.Not to mention the research benefits of a vast pool of data on medical conditions based upon age, race, sex, ethnicity, eating habits, location, etc. etc.I am 100% behind Google and anyone else that wants to centralize medical information.

  45. jackson

    The key word in all this is ‘insurance’, which is a legal graft scheme. What we should have universal health care – not insurance, and then it wouldn’t matter who knew your personal health history.Unfortuantely what passes for liberal thought on the part of the Democratic front-runners is another scheme that reminds me of exreme totalitarianism, mandatory universal health insurance. They want to force us to buy health insurance. It’s obvious that our political system is owned outright by the insurance companies.There may come a time when Jackson is in jail for failure to purchase health insurance.A crime of conscience.Off with their heads!

  46. jackson

    Andyswan must work for the insurance companies. Off with his head!

  47. Seth

    I can think of some really good reasons to make it public. A different perspective on transparency for example.

  48. Krish

    Fred,1) Would you fund my company if you come to know that, for example, I have a disease which might take me away from this world before I could convert my vision (which is attractive enough to tempt you to fund) to reality and your payback? My emphasis on might is important to make my point.2) Suppose you decide not to fund, do you think I would be able to get a job with my health condition known?You are assuming an utopian society here. I would very much love to have a society like that but we live in a society where religious, cultural, military, economical, etc. superiority is considered to be a proud thing.

    1. fredwilson

      The better question (from my perspective) is would you take money from me without sharing your medical condition with me and what it might mean for the company and its ability to realize your visionFred

  49. qwang

    Transparency is great….but so is discrimination.What’s the use of transparency if you cannot act on it? For the unhealthy, it’s life-saving: risk factors are less likely to go unnoticed, but it is also shifts financial burden to them. I find this both more fair and more effective. Granted, in the early days of health-record transparency, we’ll see a lot of irrational decisions (see FDR comment) where we judge people based on taboos in their record instead of a objective assessment of ability.But these discriminatory decisions are certainly not immoral. People should be discriminated by indicators of ability, including health–whether or not these attributes are in one’s control is irrelevant.

  50. HappyMomma

    I am glad I am not the only one who has a problem with online services storing my & families healthcare information in cyberspace!!! With healthcare being so confusing for the average person and overwhelming it is about time we all start keeping track of our own health information. I work in health care & I am amazed at how many people do not keep track of their/families information such as surgeries and medications. If you ask them most say they do not know or remember dates or specifics. We can not longer rely on the medical system to communicate & organize or most vital information. I started using a personal health record 6 months ago for my family & myself. I am using MyMedTracks from a company nameswww., it has a place to put in all vital information for each of my family members & for me. I take the summary page with me everywhere. I even took it on vacation & had to reference it for my sons medications. I urge you to continue to educate the public to begin keeping their records(even if it is in a notebook) so that they can be their own advocates. I am not ready to subscribe to an online service and have our information floating out in interent space, especially when I was able to purchase MyMedTracks for 24.95 for a one time fee & put everyones info. in it!!!

  51. Adam

    Google Health is completely secure.

  52. fredwilson

    i funded a company and the CEO died a month later of a massive stroke. he was overweight and we should have seen it coming. it was devastating to the company. we lost everything we invested in that deal. it’s a horrible story all around, a side story was we required key man life as part of the deal and the CEO couldn’t get it in time so we closed anyway and made it a post closing condition. had we insisted on getting the key man done before closing, we might have forced the physical that could have saved his life and our investment

  53. SOB Denver

    Great example, here is another one: There was this gentleman in the 1930’s who had polio (tv and print were not widely avaiable so most didn’t know this about him), had congestive heart failure and hypertensionand died during his “CEO” job at age 63. Who would want to hire this guy?! Oh, it was FDR and he was argueably one of our better presidents and accomplished quite a bit. As a healthprofessional I would strongly recommend against this kind of policy considering the hysteria the public assigns certain conditions. People can be fully functional and extremely productive withmany conditions that we hold taboo’s against (ex HIV). In addition, diagnoses can be wrong or what is believed about them change as science makes advances and we understand them better.