GlassHospital

Demystifying Medicine One Week at a Time

e-Patient Dave

406px-Dave_deBronkart-20091229Last week I had the good fortune to meet Dave deBronkart, a man known throughout the world by the simple moniker “e-Patient Dave.”

Dave’s story is widely known: diagnosed with metastatic kidney cancer at age 56 in 2007, he was given a prognosis of six months to live. By scouring the internet and crowdsourcing ideas for newer therapies (and their pitfalls), Dave tried an at-the-time-experimental therapy (with an efficacy of 20% back then) called IL-2.

Happily, it worked. Next year Dave will reach his tenth anniversary of being cancer free.

The world is a much better place with Dave in it. Taking the full measure of his experiences in health care, Dave has become one of the leading voices of participatory medicine — the (not-so) revolutionary idea that patients should be directly involved in their own health care.

He is now a sought after public speaker, thinker, advocate, and collaborator.

He gave a TED talk in 2011 that you can view at the bottom of this post. Last year, I shared a blog post he wrote about his wife Ginny’s amazing experience undergoing quadricep-sparing bilateral knee replacements from orthopedic surgeon Howard Luks.

One thing I always thought was that the term ‘e-patient’ referred to ‘electronic,’ as in ’email.’ In fact, Danny Sands, who has long been Dave’s primary care doctor, is one of medicine’s earliest adopters of using email to correspond with his patients. He also was instrumental in setting ground rules for its use (e.g. never use email in an emergency).

But as I found out in preparing to meet with Dave, the “e” in ‘e-patient’ actually stands for

  • EMPOWERED
  • ENGAGED
  • EQUIPPED
  • ENABLED

Dave and the e-patient movement, united behind such advocacy groups as the Society for Participatory Medicine (S4PM) seek to use the collective power of engaged clinicians and patients to find the best available help at the time it’s needed.  From the S4PM website:

Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual’s health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.

There’s no doubt that there are people in my profession who still cling to the ideal of the doctor being the repository of information, who view the patient as more of a passive ‘customer.’

For some patients, too, this is still a comfortable model. And that’s OK, if that’s what you want. But there’s a whole world of engaged docs and patients out there that want to interact in many of the new ways: via email, through social media, using patient portals (special protected systems that allow you to reach your health care team or look at results), even video chats (telemedicine, anyone?).

I learned some of Dave’s interesting backstory: He graduated from MIT, calling his time there ‘vocational school.’ That’s because his best takeaway skill was typesetting — he was trained to typeset the school newspaper. Throughout the 70s an 80s Dave held a number of jobs in the field, where he found one of his best skills was being a translator: explaining engineering-speak to the sales people, and explaining the needs of sales people to the engineers.

I spent more than two hours with Dave — including an interview in a library followed by a lunch. The man is a tour de force. I look forward to continuing our dialogue.

Candor and Thoughtfulness

In a first for an occupant of the White House, President Barack Obama has authored a lengthy appraisal of health care reform efforts in the United States in a top-notch medical journal, JAMA. The essay looks in detail at the effects of the Affordable Care Act (“ObamaCare”) thus far on access to health coverage and the trends in health care spending.

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The rate of uninsured over time.

Beside the historic first of a sitting President publishing a significant health care think-piece, what’s notable is the candor with which Obama appraises the ACA — both its successes and failures. He offers a roadmap going forward for how we can further expand coverage and continue to diminish the portion of our spending devoted to health care (both as a government and as individuals, i.e. what we pay out-of-pocket).

The two most impressive achievements of the ACA are the drop in numbers of uninsured Americans (from 16% to 9% of the population) and the slowing of health care inflation. The article is a bit wonky, so here is a key portion of the argument about how the ACA has slowed health care spending:

From 2010 through 2014, mean annual growth in real per-enrollee Medicare spending has actually been negative, down from a mean of 4.7% per year from 2000 through 2005 and 2.4% per year from 2006 to 2010…Similarly, mean real per-enrollee growth in private insurance spending has been 1.1% per year since 2010, compared with a mean of 6.5% from 2000 through 2005 and 3.4% from 2005 to 2010…

As a result, health care spending is likely to be far lower than expected. For example, relative to the projections the Congressional Budget Office (CBO) issued just before I took office, CBO now projects Medicare to spend 20%, or about $160 billion, less in 2019 alone.

What I also find interesting is the ancillary material: Like all JAMA authors, President Obama was required to submit a financial disclosure form to demonstrate no apparent financial conflicts of interest in his presentation of data and policy recommendations. As an attachment to the article, the White House included the President’s annual financial public disclosure statement. A couple of take homes for me: Index Funds. The President sensibly has retirement investments in Vanguard index funds. There’s even information about the mortgage on his Chicago home. If interest rates stay the way they are, he should definitely think about refinancing soon.

Stomach Draining?

FDARecently the US Food & Drug Administration (FDA) approved a device for market called “AspireAssist.”

The device is hooked up to an incision in your abdominal wall after each meal that allows you to drain 30% of your stomach contents directly into the toilet.

Harder to gain weight (and easier to lose it!) when you’re diverting a third of caloric intake from your body into the sewer system.

It works like a “G-tube” in reverse — the kind of tube that puts liquid calories INTO your stomach in the event you can’t swallow (i.e. you’ve had a stroke or some kind of oral surgical issue that won’t let you chew and swallow). Therefore it was deemed ‘safe enough’ because SO FAR it has a low complication rate.

But keep in mind to get FDA approval the manufacturers only had to show efficacy and safety in two small trials totaling less than 200 patients. This is a lower barrier to market than would occur if the new product were a medication. [Devices and medications are held to different approval standards at the FDA.]

As for whether AspireAssist is ‘ready for prime time,’ I share the healthy skepticism of my friends over at “Updates in Slow Medicine,” who wrote:

From the Slow Medicine perspective, removing food after eating directly from the stomach using an A-tube remains an experimental approach to weight loss, and we would only recommend an AspireAssist device to a patient of ours enrolled in an appropriate clinical trial.

With more clinical experience it’s possible this could be a solution for many folks struggling with obesity. But only when we know more.

Column Laurel

Good news dept:

2016-Column-Contest-560x469Dear loyal GlassHospital readers–

GlassHospital was recently recognized by the National Society of Newspaper Columnists as a finalist for columnist of the year in the Online, Blog, and Multimedia Category with >100,000 readers. This is for work published on the world’s best health care site, NPR’s Shots blog [to which I attribute such high readership — you loyalists on this site are in much more select company].

I was awarded third place, behind a Reuters columnist who works to bring broader understanding of Islam to a large general readership, and a columnist from The Street who writes frequently to expose scams and complicated investment schemes that over-promise and under-deliver. Given all that’s going on in the news cycles of late, I think this makes perfect cosmic sense.

I do my best to share NPR work on this site to attract you over there, but if you’re interested in the columns for which I won the award, links to them are below.

  1. From August 2015 — Suicide: not a natural cause of death
  2. From April 2015 — How should we educate 21st century doctors?
  3. From September 2015 — For older folks, pruning back prescriptions can bring better health

Thanks for reading!

Medical Mondays on KWGS Radio

kwgs-logo-lg2Thanks to the many of you that have inquired about the lack of recent posts. Fear not — you have not had your subscriptions cancelled.

GlassHospital has been on hiatus for some family-related events and the production of a new radio program that will air weekly on KWGS Radio, 89.5-FM, also known as Public Radio Tulsa.

It will run every Monday, broadcast in Tulsa at 11:30AM central and again at 7:30PM. Starting today!

This is the weekday slot occupied by Tulsa’s longstanding interview program “Studio Tulsa,” hosted for 23 years by Rich Fisher.

Rich has been gracious enough to allow me to host the program every Monday — the only difference is that it will be specifically covering health, medicine and wellness related topics.

Think of it as “StudioTulsa: Medical Mondays.” That’s what we’re going to call it.

If you can’t catch it live, you can always stream it at your convenience at studiotulsa.org.

Thanks for listening!

— John

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