e-Patient Dave

Power to the Patient!

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The value of sharing data: What healthcare can learn from oncology

2017 Future Health Index cover
Click to go to the report’s web page

Again this year I was thrilled to be invited by Philips to participate in their Future Health Index project. This is among the most visionary annual healthcare overviews in the world. The full report – a 100 page PDF – is available free here.

Each year they’ve also asked me to submit a post for the project’s blog. Here’s my submission this year, touching on why oncology is ahead of most specialties in this area: the field decided years ago to align for patient benefit!

Let’s all do everything we can to help healthcare achieve its potential! Sharing information is part of that.

The value of sharing data:
What healthcare can learn from oncology

Decade after decade, innovations change the future of care. Microbes, anesthesia, surgery, transfusions, public health, radiology, penicillin, genomics … each development produced a quantum shift in what clinicians can achieve and in patients’ lives.

I wrote an article for the Future Health Index last year, Could data make you live longer?, which lists six different ways I as a patient can be empowered by better data flow. Similarly, it turns out one of medicine’s next great frontiers is not biological but technological: the ability for clinicians to share relevant patient data with others.

In this innovation, oncology is ahead of other specialties: the 2016 Future Health Index report found that 71% of oncologists across 13 countries share patient data electronically, while only 63% of other clinicians do.

Why? What can we learn from this?

A big factor is that oncology as a profession decided nearly a decade ago that electronic data sharing is core to their work, and spoke up about what they need.
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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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Patient and family engagement event August 8 in Concord NH

On Monday, August 8, my state’s Foundation for Healthy Communities (HealthyNH.com) is hosting an event where I’ll be speaking, titled “Improving Care at the Bedside through Effective Patient and Family Engagement.” It’s mostly intended for New Hampshire people, but organizer Tanya Lord says “I don’t think we would turn anyone away.”:-)

So come on down! Or up, or over, or whatever. Here’s a very short video introduction. (Email subscribers, if you can’t see the video, click the headline to come online.)
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Perceptive new work on diabetes stigma. Well done!

Diabetes misconception slideI haven’t had occasion to talk much about it yet, but in November 2014 Dr. Danny Sands said routine blood work showed my hemoglobin A1C was slightly elevated. That’s what they call “pre-diabetic,” so woohoo, I get the privilege(?!) of pivoting from the cancer world to learn about diabetes in its many forms.

Man, it’s complicated – I did everything right, lost 40 pounds, became a runner, and my A1C went up! That’s how it goes sometimes, according to my friends in “the DOC” – the “diabetes online community.” Managing diabetes is complex – lots of work to do every single day. That’s one reason I’ve always said a healthy PWD (person with diabetes) is the archetypical e-patient (engaged patient).

I’m at a diabetes conference (more on that below), and last night I saw what may be the most perceptive, smart, patient-centered presentation I’ve ever seen. Ever seen. Anywhere.

I’m new to this field, so maybe this kind of thinking is commonplace here, but not from what I’ve seen. Lots to say about it, but for today here’s a starter post.

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“When assets digitize, things change fast”: the #OpenAPS do-it-yourself pancreas

Dana Lewis on stage at O'Reilly
Click image to watch video on the O’Reilly site

For some reason I’ve spoken about this a lot in speeches for more than a year but I haven’t blogged about it. The time has come.

One of my sayings in Let Patients Help is a lesson we learned in graphic arts, and the music industry learned too: “When assets digitize, things change fast.” This is, truly, an extraordinary example.

Some people with diabetes pretty much do as their doctors tell them and the industry tells them – they wait and hope that things will get better. That’s fine with me – I never say that people should be more like me. But when someone wants to take a more active role, I believe society (including medicine) should not stand in the way: let patients help improve healthcare.

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Careful and kind care, part 2: Slides & video from Maine Quality Counts

This blog post is formatted using a new method I’ve never tried before, with slides and video side by side. The video didn’t capture the slide images, but you should be able to watch the video and click the slides forward when it seems like a good time.

Email subscribers, if you can’t see the video or the slides, click the headline to come see them online.

This series of posts to start 2016 is motivated by a desire to help healthcare achieve its potential. I believe that’s not possible unless we’re clear about what the potential is and clear about the challenges and obstacles.

Before moving to additional subjects, today I want to go one step deeper on Dr. Victor Montori’s concept of care that is “careful and kind.” (See Saturday’s post, if you missed it.) I have three reasons to go deeper before moving on:
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