e-Patient Dave

Power to the Patient!

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Guest post for advisory client Massive Bio: bringing expertise to the point of need

Massive Bio home page screen captureAs I’ve written before, my business is evolving as the patient movement matures. For years our movement was, frankly, a question: “Should medicine listen to patients? Why?” I’ve spoken at hundreds of events, and happily, it’s no longer a question: we won. Now my speeches are increasingly about the academic and commercial aspects of patient engagement, not the “why.”

A sure sign of progress is that now the patient movement is progressing into business, which has opened the door for advisory work. My newest client is Massive Bio, a very different kind of entrant in the so-called “second opinion market,” where patients in trouble seek other options. It’s a popular idea but doing it successfully is not easy. Here’s the first post I wrote for their site; more will follow.
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Opioids 2: the supply side of the problem – like lethal brush fires

Source: WIkipedia ("Harris Fire"
Source: Wikipedia (“Harris Fire”) outside San Diego, 2007

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.

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Opioids. Alarm, and I mean YOU.

I posted this on Facebook in my high school class’s private group, and reaction was strong enough that I re-posted it public, with even more response.

This is sobering, very sobering, but I think everyone in the US needs to think seriously about it. My high school had 110-120 students per year.
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Opioids. A sobering story I can think about compared to MHS.

I’m at a policy workgroup in DC that’s been working for years on integrating behavioral and mental health into primary care. (Its work is finally published at integrationacademy.ahrq.gov.) We’ve been reconvened to address opioids – providing info for family docs who are now being faced with this issue, which is far far FAR from dealing with chicken pox and broken arms. :-(

A family doc from Maine is here. He has four kids, in separate high school classes. SMALL school – half our size – 60 per year. And in just those four years, THIRTEEN KIDS have died of opioids.

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Taxonomy of Burden – potent visualization of patient experience of illness & treatment

Taxonomy of Burden diagram
Click to open downloadable high-resolution PDF in another window.

Response to this on social media has been very strong. Why? 

At conferences people are always asking how to comprehend what policy people call “patient experience.” Too often they think it’s things like “Was the food good? Did we smile for you? Was parking easy?” This diagram may help change that.

Have you ever been given instructions by a clinician that are really hard for you to follow? Have you ever thought to yourself, “Don’t they know I have a life? And I have to take care of my sick mother, too, and my car broke down, and…?”

And then for many of us there are all the complications of managing multiple conditions.

Lots of people talk about the burden of a disease, but what about the burden of treatment – when the treatment itself makes life more difficult? How ironic, when the whole point of care was to make life better?

I first heard about this issue from the Mayo Clinic’s Victor Montori when we both spoke last January at Maine Quality Counts.  (I blogged his slides and speech video: Careful and Kind Care for our Complex Patients.)

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How PatientSite handles interop (not). (Screencast demo)

My PatientSite labs screen capture
Screen shot of my lab data from the video below

I’m a health data nudist: I don’t care who sees my “privates,” if doing so furthers the cause. And the time has come to push the issue, because my hospital is stonewalling, and that is just so not okay: as comments on my previous post show, this truly impedes care. And that must stop.
To end any mysteries about the much-touted PatientSite portal, in all its 1990s glory, I’ve decided to publish a complete 15-minute walk-through of everything in my chart, when I’m logged in PatientSite at Beth Israel Deaconess, the hospital that magnificently saved my life ten years ago.

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Dear John: I still want to download my records! Gimme My DaM Data!

Let us start by reviewing our anthem: “Gimme My DaM Data – it’s all about me so it’s mine,” by the magnificent Ross Martin MD and his wife Kym, multi-cancer patient whose care has been affected by lack of access to her health data. “DaM” is Data About Me, Kym’s more-polite version of my cussing. Read on for why this is newly urgent.

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