Power to the Patient!
I’m thrilled to report the third entry in my new blog series “We’re back!”, as the conference speaking business resumes. This one is a Web event – free to the public – hosted by the National Network of Libraries of Medicine. See the Register Now link here.
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The BMJ (formerly the British Medical Journal) continues to lead the world in patient & public partnership with clinicians, including more coverage of patient empowerment topics than anyone else I know in medical publishing. Some of the issues are unique to Britain but many are global cultural issues – not least being the balance of power between clinicians and the patients they serve.
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There’s been an interesting surge in evangelist activity recently: I’ve been involved in several podcasts and webinars, all giving new life to the “gimme my data” movement. Here’s one that went live today on the HIMSS Learning Network. (It’s free but you may need to register.)
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Recently there’s been a lot of discussion about how the 1996 HIPAA law, whose regulations govern health data privacy (and access), is not sufficient for today’s world of apps and digital everything. For instance, the regs say docs & hospitals generally have to be careful with your medical records – but apps and wearables like Fitbits didn’t exist at the time, so HIPAA says nothing about what apps learn about you, nor what such companies do with it. Same for sites like Facebook and Amazon’s ever-listening Alexa. So everyone in the field agrees HIPAA needs to be replaced.
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Last minute update:
Yesterday, as I was drafting this, federal officials arrested six former employees of a drug company for flat-out bribing some doctors to overprescribe fentanyl, which is 40-50x stronger than heroin, the cause of many opioid deaths.
As I’ve said in other posts, this is a complicated subject so don’t jump to conclusions until you’ve read it.
Yesterday, in Opioids. Alarm, and I mean YOU, I posted about how dreadful and drastic the opioids problem has gotten, citing (as just one example) a small high school in Maine where five percent of kids have been dying in every class. Think of how many were in your graduating class, and imagine 1/20th of them dying before graduation.
View mHealth presentation to ECPC Annual General Meeting on Vimeo.
This is a quick first post to get this online before the meeting finishes. I hope to add more notes below.
I’m in Brussels at the AGM (Annual General Meeting) of the European Cancer Patients Coalition, an association of over 400 cancer patient organizations. They are organized, they’re methodical, they’re action-oriented, working on health policy, drug development processes, patient involvement in clinical trials, and anything else in the patient’s interest. I was invited by Mrs. Kathi Apostilidis, vice president of ECPC and a long-time member of the Society for Participatory Medicine. She is also known as a force of nature.