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June 1, 2017 By e-Patient Dave 3 Comments

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.
[Read more…]

Filed Under: Culture change, Health data, Health policy, Innovation, Patient-centered thinking 3 Comments

January 3, 2017 By e-Patient Dave 10 Comments

Ten years ago today: “Dave, there’s something in your lung”

Adapted from a slide I use in many speeches
Adapted from a slide I use in my keynotes

Some moments stick in your memory in vivid, multi-sensory recall. This blog post is dated ten years after such a moment.

Today I can still see the clock digits on my Sony desk phone when it rang at precisely 9:00 a.m. It was my primary care physician, Dr. Danny Sands. I’d had my annual physical on 12/29, and as a follow-up for a stiff shoulder, on January 2 I’d had an x-ray from one of the Boston Red Sox team physicians.

Patients around the world have told me they can relate to what happened when I answered the phone: what Dr. Sands said changed my life in an instant.

Dave, your shoulder’s going to be fine – it’s just a rotator cuff problem. But there’s something in your lung, and we need to find out what it is.

[Read more…]

Filed Under: Health policy, Participatory Medicine, patient engagement 10 Comments

December 9, 2016 By e-Patient Dave Leave a Comment

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.

[Read more…]

Filed Under: Behavioral/mental, Government, Health policy Leave a Comment

November 28, 2016 By e-Patient Dave 4 Comments

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.

[Read more…]

Filed Under: Health data, Health policy, Participatory Medicine, patient engagement 4 Comments

November 22, 2016 By e-Patient Dave 18 Comments

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.

[Read more…]

Filed Under: Health data, Health policy, Participatory Medicine, patient engagement 18 Comments

November 7, 2016 By e-Patient Dave 23 Comments

Dear John: *I* want to download my records.

Dear Dr. Halamka,

I want to download all my data from my 14 years as a patient at Beth Israel Deaconess Medical Center. What button should I push?

In June you said on your blog (left, top) and on MedCity News that no patient has ever asked for that, but your tech support says you don’t have a way to do it (see red outline).

Tech Support said I should call Medical Records. I did, and they said they can’t deliver things electronically. So where is the link you say nobody has ever used?
[Read more…]

Filed Under: Health data, Health policy 23 Comments

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