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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Evolution, year 2: 2008 – the e-patient movement and starting to speak

Last month I started a ten part series of retrospective posts, reviewing where I’ve been and how my perspective has significantly changed what I’ll be doing from now on. The first post, on 2007, was when I was diagnosed as nearly dead and got better; this is 2008.

I’d started my old blog at Thanksgiving 2007. Two months later, in January, my life took a sharp turn when I discovered e-patients. Here’s how the year unfolded.

January 24: Google Health

In hindsight this is amazing, but my tenth blog post ever was about the announcement of Google Health: What’s next, Google Health??  I said it’d be a cold day in hell when I’d trust Google with my health data. 13 months later that would change radically, which would change my life.

January 23-28: The e-Patient White Paper and “e-Patient Dave”

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New Orleans investigative reporters expose health cost craziness, with ClearHealthCosts

Click to see the Times-Picayune article
Click to see the Times-Picayune article

Video of the first episode is below.

Last updated April 10, 9:30 pm ET.

Regular readers know that among my various causes – patient-centered care, patient access to our medical records, etc – is the importance and challenge of managing our health costs. For years I’ve blogged about my own experience – see the list of posts below. Occasionally I’ve blogged about my friends at ClearHealthCosts, who have been busting their butts to … well, make health costs clear. And for years I’ve wished we had more public attention on this crazy situation. Because when costs are chaotic, it can be hard to get the care your family needs without getting hurt in the process. How ironic is that?

So I’m thrilled to say that WVUE in New Orleans (“Fox 8 NOLA”) started a new series April 5, “Cracking the Code: The Real Cost of Health Care,” followed immediately by a print series by the Times-Picayune‘s Jed Lipinski.  From what I’ve seen so far, each is spot-on. ClearHealthCosts is a big part of the project.

To my surprise a simple Skype interview that I did was used in the first TV episode. I can’t wait to see more.

It’s all new so for the moment I’m quickly adding this page to my site … I’ll update it when I can. For now, here’s video of the first episode, and below are my past posts on health costs. I hope it helps.

FOX 8 WVUE New Orleans News, Weather, Sports, Social

My past posts on figuring out health costs

You can also browse my entire cost-cutting category.

4/12/16: The difficulty of shopping when they hide the facts: that skin cancer RFP in the NY Times

9/11/15: Article in USA Today soon with my opinion on costs, and online advice

3/11/14: How much should/could this pathology cost? (Skin cancer biopsies)

2/7/14: A new era: the “consumer-patient,” via Inquire Healthcare

6/5/13: “Chaos, behind a veil of secrecy”: Show me the cash flow

4/25/13: The reality of shopping for health insurance (pre-Obamacare)

3/25/13: An encounter with the Swiss medical system

3/11/13: The Big Ugly continues: “Hospital charges bring a backlash”

3/4/13: Let Patients Help, Cost-Cutting Edition: “Chaos behind a veil of secrecy”

1/6/13: Pricing visibility – video interview with HealthWorks Collective

12/11/12: Reprise: The healthcare waste pit is BIGGER than the fiscal cliff.

11/11/12: Great Robert Wood Johnson video “This Cost How Much?”

10/1/12: Perceptions creating reality: the scapegoat dynamic and the role of the patient

6/16/12: A dermatologist responds: “Who the heck is charging $3000 for Mohs first stage?”

5/21/12: Raw numbers for treating my basal cell carcinoma at three hospitals

5/10/12: Decision: Just scrape it off. (“ED&C”)

3/25/12: Let Patients Help, Cost-Cutting Edition, Part 3: Shopping for my next CT scan

2/20/12: It turns out being an engaged patient/consumer takes time.

2/11/12: I’ve started an RFP for my skin cancer

2/9/12: Time to practice what I preach: I have skin cancer again.

1/9/12: Let Patients Help, Cost-Cutting Edition, part 2: Shingles vaccine

11/5/11: Let Patients Help, Cost-Cutting Edition, part 1: a bill.

 

 

 

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I suppose that’s progress: “Patient-driven drug development is morally permissible”!

Screen capture of abstract "patient-driven drug development is morally permissible"This is one of those funny moments in a social movement. A few weeks ago the first email in my inbox was a Google Scholar notification saying that one of my BMJ articles had been cited in a new book, Philosophical Issues in Pharmaceutics. Yay!

The details, though, are amusing to an activist. The opening essay is titled Patient-Driven Drug Development, and in the abstract the author says “In this essay I argue that patient-driven drug development is morally permissible.”

At first I thought “How nice of them to say it’s morally permissible to listen to patient perspectives,” and I snarked about it on the BMJ Patient Advisor email group.  But then Amy Price PhD, a researcher/patient at Oxford, noted that this actually is real progress: it means people in industry are actively looking at questions like this, and things are starting to move forward.

So, hurray! It’s more significant than I thought. Here’s to progress, and here’s to more of it!

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Evolution, year 1: 2007 – cancer & recovery

First in a series of posts about the ten years since my diagnosis.

In 2007 I felt like my life was cornered into “Game Over.” Instead, it said “Free replay!”

Earlier this month on Twitter, health futurist @Berci asked which books I’ve read recently. It reminded me that for the past several years I’ve wanted to blog about how my views have changed as I’ve learned more about healthcare, which saved my life yet which has so many extraordinary malfunctions and disconnects, even as it accomplishes more and more apparent miracles. Even disconnects and malfunctions among very smart and conscientious people.

As I dug out the facts for this retrospective – my Amazon buying history (in print and audio and Kindle) and reviewed my travels (1.1 million miles to 500+ events) I thought wow, this has been an amazing trip, with some significant turns along the way. So I’ve decided to blog the odyssey and evolution year by year.

In this post, for 2007, there’s not much blogging, and no speeches, but a lot of terror, facing mortality, redemption and joy.

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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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