e-Patient Dave

Power to the Patient!

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Alumni club dinner: How e-patients can help healthcare achieve its potential

After eight years of speeches at conferences, I’ve observed that while medicine achieves incredible miracles that were impossible a generation ago – like saving my sorry life – it still falls short of potential more often than necessary. Lots of people write big fat books about it, but some problems don’t change, which raises the question: what can we tell consumers of the system, patients, that will help them get the best care when they’re in need?

So that’s a new series of speeches I’ll be doing, not just at big conferences but at local meetings in cities and towns, hospitals and community centers. These talks aren’t designed to change the healthcare system much; to the contrary, they’ll empower ordinary people who use the system to help the system do its best.

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We must democratize healthcare.

Revolutionary fist with words "liberate, empower, progress, transform, release, set free, break outTo achieve its potential, healthcare must be democratized.

I’ve reached this conclusion after hundreds of speaking events in eighteen countries over nine years. For me “speaking” has always involved a lot of listening and learning, and the more I’ve learned, the more I’ve puzzled over this paradox:

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Larry Weed, 1975: “The patient must have a copy of his own record”

This week I’ve had two new blog posts published on other blogs. This one’s close to my heart.

Dr. Larry Weed, who died in June, was a legendary physician, way way WAY ahead of his time in his vision for computers in healthcare, but also for his clear vision that if it’s your health, you need to be actively involved in managing it. AthenaHealth, a medical records system vendor, commissioned me to write a post about him, and it went live yesterday.

I had found a copy of his amazing 1975 book Your Health Care and How To Manage It, and found some astounding things in it. Please go read the post and see the quotes.

Bringing method to medical practice

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Essential e-patient training: the uncertainty of all information

Pexels.com – Creative Commons CC0 license

Below is a long comment I posted Wednesday on my neighbor @KevinMD’s blog. (Most of his widely read blog is articles he’s found elsewhere; he’s cross-posted some of mine.)

The post I replied to is a thoughtful submission by two grad students (one business school, one med school).  Their thoughts are valid but as you’ll see, the issue isn’t apps – this is part of a broader issue that every engaged patient (you!) should understand. Here’s my reply.

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WikiProject Medicine: med students join in producing high quality Wikipedia articles.

I’m taking the extraordinary step of rerunning, verbatim, an entire post from the e-patient blog in 2014 about this important development. Why? Because tomorrow an update is coming, and to fully appreciate the news, you need the background.

Looking back on this, I see it sums up tons of different issues that have turned out to be important to a key question about how best to do healthcare: how do we know which information is reliable, and how can we improve how we get there?  The answer is clearly not to only listen to the medical literature, which, it turns out, has important delays and quality problems. To understand that radical statement, read the links in this long post.

Screen capture of The Atlantic headline
Headline from The Atlantic’s article last October

Peter Frishauf, member of the editorial board of our journal, has brought what is to me the most exciting news for participatory medicine since the OpenNotes project. Importantly, this news may have broader implications – because it addresses one of the core challenges of patient engagement: the quality and freshness of medical articles.

Last fall [2013], UCSF School of Medicine professor Amin Azzam started a course for fourth year medical students to become Wikipedia editors and apply their skills to Wikipedia articles that were important to them and were poor quality. It got big-name media attention (NY Times, The Atlantic), and it should – because as we’ve often written, one of the core challenges e-patients face (and doctors face!) is finding up to date, reliable information.

This is not a trivial question – you can’t just rely on the peer review process, because it too has flaws, and good luck ever getting mistakes fixed. The biggest example is the ongoing vaccine controversy caused by a massive failure of peer review in the top-tier journal Lancet, but there are many others. Another shortfall is what our movement’s founder “Doc Tom” Ferguson called “the lethal lag time” – the years of delay between a result being discovered and the time it reaches doctors.

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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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