e-Patient Dave

Power to the Patient!

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My comment submitted for Meaningful Use Stage 3 last week

"No Meaningful Use without Me" badgeThis is long but if you’re interested in patient data access I hope you’ll find time to read it. Something important is afoot in federal policy.

Updated 6/4 – added a link to a doctor’s blog post

Over on e-patients.net, the blog of the Society for Participatory Medicine, for weeks there have been blog posts about an important moment that’s happening right now in Federal health policy.  The details are complex and geeky (imagine that, with Federal policy) but here’s a tiny tiny nutshell, for readers of this blog:

  • In the 2009 federal stimulus bill (not as part of Obamacare), billions of dollars were designated to help doctors and hospitals finally computerize.
  • To get the money, they have to not just buy the system and let it collect dust; they have to put it to “meaningful use” – “MU,” as it’s often known.
  • Not surprisingly, what you have to do to get the money is a topic of hot debate and much lobbying.
    • Remember your civics class? The Legislative Branch writes a bill, and then in the Executive Branch, regulators write the regulations that put the law into action. The regulators get to say specifically what’s legal and what’s not. (See, lobbyists aren’t just on Capitol Hill – they talk to the Executive Branch too.)
  • An important part of this discussion for several years has been whether they have to give you and me our data that’s in their systems. Basically: can they use those systems to create your medical record, hoard it (keep it from you), and still get their federal reimbursement??

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New BMJ article: “From patient centred to people powered: autonomy on the rise”

Screen capture of the article on the BMJ site

I’m thrilled to say that the BMJ, formerly the British Medical Journal, has just released a new article I wrote about the “social movement” aspect of our work, including the rationale for listening to the patient perspective.

Intended for medical audiences around the world, it’s part of a big, 21-article multimedia “Spotlight” supplement that will be in Thursday’s print edition; it was all released online yesterday. Over on the e-patient blog I posted the full list of articles, including the names of other members of our Society for Participatory Medicine who are in this issue. Big participation, big visibility!

This supplement, appearing in one of the world’s top medical journals, may well be the biggest moment yet in the history of our movement. It’s got hours of reading and listening, with contributions from eight countries, if I counted correctly.

Those of you in my generation – the era of many social movements – will relate to the parallels with what’s happening today: a whole class of people whose voice has been considered “not worthy” is speaking up, demonstrating capability, and pushing back when we’re told to “stay in our place.” :-)

Is it time for a new scientific field?

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NEHI Patient Engagement Fellowship

NEHI logoThere are stages of any movement, and make no mistake, the shift to participatory medicine is a social movement, a full-bore cultural movement. It’s a change in roles, a change in expectations, a change in beliefs about the validity of a new party’s perspective – in this case, the patient’s.

I’m fond of pointing out milestones, the turning points in our movement. One was the founding of the Society for Participatory Medicine in 2009. Another was when patient voices started to be invited to speak about patient issues in Washington policy meetings. Another was when the Institute of Medicine said in 2012 that a cornerstone of medicine must be “Patient/Clinician Partnerships” with “Engaged, empowered patients.” Then the OpenNotes project, the BMJ editors announcing their Patient Advisory Panel, the founding of the Patient Voice Institute last year … all are signs of the movement maturing and gaining acceptance in the establishment.

Today I’m thrilled to announce a small but significant step in another dimension: NEHI, the Network for Excellence in Health Innovation, has offered me a Fellowship in Patient Engagement – a part time six-month project, advising them about patient perspectives.

Here’s NEHI’s vision map – click it to visit their site. And note what’s at the top of the circle: Evidence, Action, and Policy Impact. My kind of people!

NEHI's vision map

Now the work starts. May this be the start of many such initiatives in many organizations that focus on improving healthcare!

For the record, here’s the 55 minute video of my keynote at NEHI’s 2013 annual meeting … as it says at the outset, this was a new approach: a new beginning and a new ending.

http://vimeo.com/76960537

Thank you, NEHI, for your vision, and let’s do this thing!

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Six month countdown to Medicare! What do I need to know?

65th birthday cake by Oana Go (Germany). Click to view project on Craftsy.
65th birthday cake by Oana Go (Germany). Click to view project on Craftsy.

Yesterday I blogged about my business’s fifth birthday … and this week, it turns out, marks six months before I turn 65!

And that means I go on Medicare.

I’ve learned enough in these five years to know at least two things:

  • You’re a patsy if you think the American medical system will necessarily take care of you. It might, but if it does, it may be in the process of making itself a boodle of money.
    • Yes, there are many exceptions – individuals and organizations who care and who work hard. But I’ll repeat: you’re a patsy if you sit back and assume the system will take good care of you.
  • When it comes to money in American healthcare, don’t expect anything to be explained clearly.
    • 18 months ago I blogged about a famous policy paper, Hospital Pricing in America: Chaos Behind A Veil of Secrecy by Princeton economist Uwe Reinhardt. That paper was published 8 years ago, and hardly anything has changed. (The title of the article is real and not an exaggeration.)
    • In 2013 I lived the chaos and the veil myself, in my own shopping for everything from CT scans to shingles vaccines to skin cancer treatments. I saw at close range that Reinhardt was not exaggerating, and I blogged it in a series called  “cost-cutting edition.”

There are signs of hope, such as ClearHealthCosts, but although I work for change, I’m not waiting for the posse to save me.:-)  I’m gonna be pro-active, engaged, empowered, responsible! I want to get educated, because I’ll be on Medicare for the rest of my life. And I want to approach the education from the patient’s perspective … not what the system wants to tell me, but what people like me have found necessary.

So, you who’ve been through it: what do I need to be aware of? What choices will I need to make?

I do know these things about Medicare: [Read more…]

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US News: 10 Tips from Empowered Patients. (Mine: the basics of empowerment)

Screen capture of US News web headlineLast week US News & World Report ran a “slide show” (series of short pages) with tips from 10 empowered patients. They’re all good – I recommend you go read them. (Click the graphic, or click here.)

Knowing that other patients would be giving lots of tips, for mine I decided to focus in mine on something that’s been on my mind a lot lately:

We’ve learned that the patient movement shares patterns with other cultural awakenings. Who knew?

I’m 64 years old. In the ’60s I learned that step one of empowerment is to know what you want. Step two is consciousness raising: Realize who’s saying what to whom, and what assumptions that might imply. Perhaps it’s what you’d like; if not, step three is to ask for it. 

Enlightened patients (and clinicians) know that nobody knows everything – neither patient nor clinician – and approach it as a partnership, in what we call ‘participatory medicine.’

It feels a little odd to be teaching empowerment principles (which I learned in college long ago) to a mass market audience, but increasingly I see this is what we need to do.

This is no small issue – it’s not just about patient rights per se. If people haven’t thought about what they want, and haven’t become conscious of what’s happening around them, and haven’t asked for what they want, then when advocates request change, earnest physicians have every right to say, “Look, my patients aren’t asking for this.”

So think about what you want, and see whether things are going the way you want.  That applies both in a hospital and in a doctor’s office – anytime you’re tending to someone’s health, including your own.

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Interview on WebM&M: “What could be said that would make any difference?”

WebM&M screen grab
Click to go to the interview

Sometimes the wheels turn slowly. Last August I was invited to be interviewed for “WebM&M,” an online feature that I’d frankly never heard of. The invitation said

I’d like to invite you to be a featured interviewee on the topic of “The Role of Patient Advocacy in Patient Safety” for AHRQ WebM&M, the online case-based journal on medical errors and patient safety. The Web site represents the federal government’s major effort to educate practicing doctors and nurses about patient safety. Together with its sister site AHRQ PSNet, AHRQ WebM&M gets nearly a million visits annually. You can visit the site at http://webmm.ahrq.gov.

WebM&M is managed by Bob Wachter MD (blog, Twitter Bob_Wachter), with whom I’ve crossed paths a few times; I described his work and my impression in a post here a while ago, and let’s just say I’d jump at anything he recommends. So we did the interview, and it faded away into the backlog of things being processed (by somebody else :-)).

Then a few weeks ago, up popped the transcript, ready for review. A few quick edits, and voilá: In Conversation with…Dave deBronkart (“e-Patient Dave”). It includes an 8 minute excerpt of the audio.

Honestly, I’m thrilled to have been invited to do this. Thanks to Bob, to AHRQ (the Agency for Healthcare Research and Quality) … and to every single one of the clinicians and patient advocates whose thoughts and advice in these past seven years have given me these thoughts.

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