If you are interested in health care, you should be aware of how health care is sloooooowly (oh, so slowly) being transformed by new models of patient-doctor communication. An excellent blog which discusses these issues is e-patients.net. It’s run by people active in their own health care and who are passionate about educating other patients, doctors, health administrators, politicians and anyone else about how being such an active patient can greatly improve health outcomes.
For example, here’s Dave deBronkart’s short bio from the site:
Diagnosed with advanced kidney cancer (median survival 24 weeks), e-Patient Dave deBronkart rapidly learned to use every aspect of empowerment, technology, and participatory medicine to beat the odds.
I’m sure we all know doctors who still refuse to treat a patient as an intelligent person capable of being active in their own health care, and yet more who express concern about the idea that patients will believe anything they read on the internet and do themselves harm. There’s an excellent white paper linked from the site that addresses these issues: e-Patients: How they can help us heal healthcare. The paper found that this idea that online patient support and information sharing will harm people is simply not true.
Here are some other recent highlights from the blog:
Participatory Medicine as Revolution! Think Critically! Communicate!
This post examines health care using perspectives from Pedagogy of the Oppressed, a famous book on education: “Participatory medicine cannot tolerate an absurd dichotomy in which patients are merely following their doctors’ decisions—a dichotomy reflecting the prescriptions of the dominant elite. Revolution is a unity, and doctors cannot treat patients as their possessions.”
Applying paticipatory principles to EHR/PHRs
e-Patient Dave original story of the health data transfer from his hospital EHR to Google Health PHR is remarkable in many ways and shows why participatory medicine could well be one of the fastest way to lower the overall cost of health care by helping fix some specific dysfunctions in the system. It took just one active and engaged patient to produce a remarkable change in the way interoperability between EHR and untethered PHRs is going to be defined at BIDMC and probably at HITSP, at a minimum.
In other words, one single real event, driven by a patient has given more effective feedback to improve the national standards than years of deliberations of the cream of the cream in HIT in their rarefied tower of knowledge.
There are some who express concern that electronic health records will be used against patients by government or health authorities. This is addressed in the post Please! No more magical thinking in HIT! – wherein it’s pointed out that patient participation is essential to avoid those fears. It’s no good implementing EHRs and thinking that will solve everything unless you actually ask the people who own the data–the patients–and get their collaboration and participation in creating The New Health. And patients want security, and full access to their own data to check that it is correct. I personally would like to see the option for people to not have their data included in statistics, and to be absolutely sure that if it is, all personally identifying information is removed, with full disclosure of what the data will be used for. And, of course, the option for someone to not have an electronic health record at all.
Why is this important for fat people? Well, there’s already a revolution going on in health care for fat people, and it’s being driven by fat people themselves through online communication and information sharing. It’s all these fat acceptance blogs and mailing lists and forums. We share with each other information on health and fat to counter the poor reporting and biased studies. We share where to find fat-friendly doctors and warn about anti-fat doctors. We discuss Health at Every Size. All kinds of help, advice, and support for physical and mental health. Again slowly, oh so slowly, doctors and other health professionals are getting wise to the ways of HAES (much to the alarm of any other doctors who make money off “treating” fat people). There’s some top-down pushing from such people as Linda Bacon, and then there’s all push from the patient end of the stick – fat people refusing to see doctors who treat them badly, discussing HAES and weight-neutral health with the doctors who might be dubious but are willing to communicate, and support for doctors who are pro-HAES. (And yes, I do realise that there are fat-acceptance people who don’t consider HAES that great and have concerns about healthism, but this isn’t the post for it.)
Elelctronic health records are only a part of the new healthcare, and you could in theory have collaborative medicine without them. It’s this collaboration and conversation that’s driving change.
I would actually love to get an electronic copy of my entire health record which I could keep in the manner I deem secure. I’d keep it on one of those nifty IronKeys probably, with backups. If it was kept online, I think something like the YubiKey would be useful for secure passwords. I’m actually far more worried about the security of physical records – I know at my GP’s office, the records are on full display behind the reception desk. And an enterprising information thief would only need to crack one window to get in and at the records. But I digress. I prefer to be in charge of my own information. Having an EHR to which I could add corrections and clarifications, instead of relying on a busy doctor to write down “pernicious anemia” instead of just “anemia”. I’d probably delete “obesity” and just put “fat” as one thing I could do to resist the medicalisation of a body size. The Dave deBronkhart I mentioned previously discovered that because of wacky insurance billing codes, he “had” all these medical conditions he previously never knew he had, which could have caused problems when new doctors were looking at his record, and so on. Getting a hold of his own data allowed him to publicise the problem and correct the record.
In conclusion, I think that pushing for this new model of health will ultimately benefit fat people. It’s a long road, given how many fat people themselves are convinced they hate themselves and deserve poor treatment. The fat-isn’t-actually-a-moral-failing-and-won’t-kill-you cat is out of the bag, on the internet, and you can’t undo it. Take charge of your own health care, whether it’s full involvement you want or you just don’t care that much and are happy to say so.
For an interesting documentary on what’s popularly called “Web 2.0″, specifically as it relates to government, watch Us Now. Us Now in high-def or Us Now in regular. Imagine what they’re saying, applied to health care. In fact, the bits on mumsnet.com are easily applicable. It’s about new models of trust and reputation – one woman mentions how they are tired of ‘ridiculous’ information on child rearing from doctors and social workers and they trust information from other mums far more, because they’re also mums. These days, if you are a person in authority and you say something ridiculous or dubious, anyone can go look up more information on the net, and connect with other people, other experts, and see what they have to say.
 I can see where there’s some artificial inflation of ill-health-correlated-with-obesity statistics: I went to the hospital a few months ago because I was badly dehydrated from gastric flu. When I finally saw the doctor, he had put on my exam card “gastroenteritis” and “obesity”. My fat has nothing to do with my hospital visit, yet is recorded as such. Frak that. Now If I had proper electronic access to my own record I could go in and put a note on it to the effect of “how is this relevant?”. To do that on the paper record is a pain in the arse.