Power to the Patient!
I’ve been meaning for years to master this then blog about it, but I give up. Help!
I know there’s a way to record your voice during a presentation, including the timings of when you changed slides.
I want to do this, because then I can post a talk immediately for automated playback. I sure wish I could do it with today’s 14 minute talk!
In a Twitter chat this afternoon, friend Dr. Jack West noted that some e-patients are great to work with and others, not so much. It’s obvious we need to teach people how to do this effectively – both docs and patients alike … sort of a “patient engagement handbook.”
So I decided to publish this, from the “tip sheets” section of my book Let Patients Help: A Patient Engagement Handbook: :-) This part is written by my primary physician, e-patient pioneer Dr. Danny Sands.
By Dr. Danny Sands
For easy sharing with providers and friends, this post is available at the short URL dave.pt/NewHIPAArights
Last month in “You can ask to see or get a copy of your medical record & other health information” we reviewed an important document [click the image at right] from the Office for Civil Rights that every e-patient should know about – and sometimes carry a printed copy, because many providers don’t know about it. That post’s headline tells the story: you can ask.
Now, as part of the continuing rollout of health reform in the age of “e,” there’s a new video from ONC, the people in HHS who run health IT policy. Here’s a text summary of the items in the video above.
[Read more…]
Nominations close Friday for this inspiring award. I’ve twice attended their award event and both times I’ve just been touched and moved by how good people have responded to a real setback – a medical “adverse event,” as they’re called, so euphemistically.
Linda Kenney almost died from an all-too-possible accident … a local anesthetic got into a blood vessel and stopped her heart; she woke up three days later in an ICU. Out of that experience – and the healing that eventually happened with both her family and the involved anesthesiologist – she started MITSS – the Medically Induced Trauma Support Services.
She wouldn’t call herself a hero, but I will … do you know someone who’s responded to such an event by Supporting Healing and Restoring Hope? That’s what the MITSS HOPE award is about. The process isn’t hard – you just write a 500-1000 word essay, and fill in a form as described here.
Please participate. Here’s a bit more, from the award’s home page:
Glossary for non-English readers: “ratty” = poor condition; boxers = boxer shorts (Wikipedia).
This is an update on a post from three years ago about the business of patient engagement – the challenges of starting a business without funding or a proven business model. As regular readers know, after years of struggle I turned an important corner (my business reached break-even), and looking back, I want to explain something.
Back then my underwear included ratty boxer shorts. (I took a picture but you don’t want to see it.) In the face of my other bills, I couldn’t afford to buy new underwear. Yet time after time people invited me to come…
Some even asked me to pay my own travel costs. See the recent post A turning point for patient voices, which details the irony in telling someone their voice is valuable but then saying it’s not worth spending a cent.
(Others did offer support, even for advice by phone. Early examples who come to mind include Emmi Solutions and InfoSurge – importantly, both are patient education companies!)
Like many experienced patients, back then I had plenty to say but I didn’t have any money. To attend an event and contribute value, I needed funding . I was the same person I am today – I just didn’t have any money. And I couldn’t spend money I didn’t have – I was being responsible.
How ironic that being responsible would squelch a patient.
On the e-patients.net blog, I just posted an important update about the OpenNotes project, which is letting patients see what their doctors wrote – online. Look: over a million patients and families are getting access now.
Please click this screen capture (or click here) to go read the post. And ask your doctors and hospitals to get with the program! If you don’t ask, they won’t know you want it.:-)
