Really public health

I signed up for Google Health and immediately found it handy with news about each of my conditions. My wife wondered why anyone would use it and risk health data becoming public.

But my life is already an open blog and I’ve already talked about most of my conditions — mainly atrial fibrilation — and received benefit for it: support, links, resources, others’ experiences.

So why not talk publicly about our health? Fear. We fear losing a job or not getting insurance or, with certain conditions, being stigmatized. That is what we should address. With universal insurance and laws to prevent discrimination on health, we’d have no need to fear. Stigma, I can’t do much about.

There are other benefits accruing if we talk publicly. The more we share experience and create data, the more doctors can learn about our conditions and perhaps what causes them. The more we support each other, the more helpful it is for each of us (see Patients Like Me).

Do I trust Google with my health information? Do I trust you? The key is to make sure that I have control over my data. Just as with Facebook, control is the issue.

: Just as I finished writing this, I see that Fred Wilson agrees. Note that his father and I have shared our afib experience and I found it very helpful.

  • You’re right. There are potential benefits for health care if people talk about their conditions. Others can recognise symptoms earlier, talk with doctors more knowledgeably and with less fear about their treatment and prognosis. But there’s a sliding scale of what people feel it’s ‘safe’ to admit to. Without wanting trivialise, atrial fibrillation and other heart complaints have quite a respectable profile. Other disease classes, such as cancer and even Aids (in some circles) have gradually shed their mantle of secrecy.
    But try mental health – that’s a different matter. I recently worked on a project in which I talked with psychiatrists working in the UK NHS. Psychiatry is not a glamorous specialism, and many of the consultants I talked to could, quite deservedly, be described as heroic. A common theme emerged (unfortunately not really relevant to the project as whole) and that was how much the public mis-understand mental health conditions, partly because they are rarely talked about in any sort of positive way in the media. We hear, for example, of people’s battle’s against cancer, but not their struggles with mental health. There are some exceptions: Stephen Fry has done much to de-mystify depression, Terry Pratchett is now talking about his experience of Alzheimers disease, but imo addiction is treated more as a crime than an illness and schizophrenia and psychoses (which can be managed with the right care and support) are rarely mentioned, and certainly almost never positively.
    So there’s much to be done in removing stigma, and legislation may help, but in the meantime the media can also do something about it.

  • In an era when the National Health Service in the UK has a bad habit of accidentally losing 1000s of confidential records in public places, and employers investigate health records as much as they can, there really isn’t much to fear about openness.

    About non stigma conditions, anyway. As said above, mental illness is still very much misunderstood, particularly by the general public who perceive themselves as unaffected.

    And then there are further issues like HIV, Aids etc.

    As for insurance, if all my data is linked, will a heart attack lead to the insurance company listing every time I Twittered about a cheeseburger? Or about smoking a cigarette? It sounds comical, but in a non-engaged company, this is probably the type of idea that will be their first thought about Google Health.

    Personally I’m a huge advocate of national health services, although I have to admit , under investment and under resourcing has forced me to take out additional insurance. So I wouldn’t worry about health cover. But I sincerely doubt that any effective legislation will ever be enacted and enforced enough to stop individuals who are open about their health from being penalised.

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  • Cooler Heads

    You are kidding. Ever heard of preexisting conditions?

    I’d talk about my health issues, but only if my insurers can’t deny me coverage or increase my rates if I do.

  • Uh, cooler, I said that; it’s precisely my point: With universal insurance no one need worry bout that.

  • Iris Evans

    Hi Jeff,

    Tell me about universal insurance. I am desperately trying to get medical travel insurance for my husband to go to the States this summer and finding it impossible to get cover for his atrial fibrilation which began in January this year.

  • The idea behind a common repository for each person’s health details makes a lot of sense. I agree with your comment that talking openly about health issues can have a lot of positive effects.

    As regards Google Health — Microsoft and others want to provide the same service. It becomes a lot like social networks. How many networks does one join?

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