e-Patient Dave

Power to the Patient!

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“Better Health: Everyone’s Responsibility” – resources for today’s conference

Patients Included badge
Click to view Lucien Engelen’s “Patients Included” story on LinkedIn

Conference logoFor years we in the participatory medicine movement have been talking about the need to involve patients in all aspects of medicine – not just our own cases but even in the design of the whole system. The movement is exemplified by the Patients Included badge at right, created by Dutch health visionary Lucien Engelen.

Today I’m speaking at a truly extraordinary healthcare event in Hartford – it’s completely about, for, and aimed at  the public – us ordinary people:

  • The title is right on target: “Better Health: Everyone’s Responsibility”
  • The event is scheduled from 12:45-8, so people only have to take a half day off work
  • Admission is $35 including dinner(!!), or $10 without(!!)

Over 500 local people (aka patients) are attending. For more, see the event’s website.

In my talk I’ll mention various resources participants can look up, to learn more about the movement and boost their own abilities.  I’m going to publish this post now, and through the day I’ll add various things as they come to mind.

BIG thanks to the event’s organizers, the CT Partners for Health partnership and its founder Qualidigm. Here are some starter links: [Read more…]

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Recording your voice onto a PowerPoint

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!

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From Let Patients Help: “For patients: collaborating effectively with your clinicians” by Dr Danny Sands

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.

Let Patients Help front cover

For patients: collaborating effectively
with your clinicians

By Dr. Danny Sands

  1. Appreciate that healthcare should be a collaboration among the patient, the patient’s caregivers and family, and clinicians.
  2. Be mutually respectful of each other’s contributions. Your physician is an expert in medicine, but you are an expert in you.
  3. Take responsibility for your health—healthcare is not a spectator sport: it’s participatory.
  4. Prepare for your visit: read about your conditions, review your record, make a list so you don’t forget, and discuss the agenda in advance. [Read more…]

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You have some BIG new rights under HIPAA. Explained in a *clear* video from ONC

For easy sharing with providers and friends, this post is available at the short URL dave.pt/NewHIPAArights

OCR HIPAA flyer excerptLast 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…]

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Do you know someone who responded inspiringly after a medical error? Nominate them.

MITSS HOPE award logoNominations 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:

[Read more…]

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Ratty boxers: what it means to really, truly have no money

Clip art of an experienced penniless patientGlossary 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…

  • speak for free
  • advise their company for free on the phone
  • attend policy meetings for free.

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.

[Read more…]