e-Patient Dave

Power to the Patient!

By 4 Comments

Difficult choices with imperfect information

On 9/11 I was in Chicago at Print ’01, a huge exhibition in the print industry. I turned on the TV in my hotel room just in time to see the second plane hit. It was unworldly – and I was 1200 miles from home.

During my cancer I learned that although we long for certainty, sometimes it’s just not possible. We can only choose from available options, with imperfect information, and see how it plays out. I was desperately sick and wanted a sure treatment, but there wasn’t one. When I learned about interleukin I wished I could know if it would work for me, and they couldn’t say – even Beth Israel Deaconess, one of the best places in the world for this disease, couldn’t say. Today I know they acted professionally by telling the truth: no false hope, and no false despair – just the truth, which my primary physician Dr. Danny Sands might say this way: “Sometimes we just don’t know.”

As regular readers know, that was freshly reinforced when my younger brother died unexpectedly eleven days ago. (See A death in the family and A sister’s perspective.)

Now, due to another uncertain family circumstance, we’ve decided my June trip to Australia must be postponed to another time.

[Read more…]

By 38 Comments

“17 years for new medical practices to be adopted”: source

e-Patient Dave Slide - Balas IOM 17 year adoptionImportant update next day: see comment below by Michael Porembra (and my reply) with new source information and important data on changes in rate of adoption.

A tweet from South By Southwest by @DVanSickle led me to finally post this, which I dug up last spring with the help of the ever-awesome @TedEytan of Kaiser. It’s part of my presentation at the Kanter Family Foundation’s confab last May for their Learning Health System initiative. (Video of that speech is here.)

The issue is a statistic often quoted by advocates for improving medicine: “On average it takes 17 years for new practices to be adopted.” That’s pretty shocking – the idea that some docs may not know something important to your college-age kid, even if the info came out when that kid was in diapers!

The source turns out to be a paper published by the Institute of Medicine in their Yearbook of Medical Informatics 2000. I’ve been unable to locate the full text online; somebody (Ted?) emailed me a scan, from which I screen-grabbed the excerpt in this slide.

For more validation, here’s a Google search of the table’s title, and here’s a search of “Yearbook of Medical Informatics 2000″+Balas.

People always ask “Is it still true?”

[Read more…]

By 3 Comments

Interesting new e-patient resource: Medivizor

Added 9/11/2013:  I do not endorse this product. I have no idea if the information it gathers is reliable. I add this because in a press release the company lists me in people who have “covered” their service; I want to be clear, as it says below, that although I wrote about it, I didn’t endorse it. Frankly it feels a bit dicey that a careful curator of information would be a little bit incautious about the meaning of words.

I get a lot of requests to look at new products, websites, services. If I were rich and retired (or tenured :-)) I’d spend my whole life exploring, but I’m not, so I can’t. This is one, though, that caught my eye, because it proposes to automate something that can normally only be done by peers: filter all the information out there and tell you what’s useful to you.

If this works out, it could become an essential resource for engaging patients and families.

Disclaimer: I haven’t been able to vet the site, testing it as someone with “skin in the game” because the company is currently only handling a few conditions. Also, I’m open to reports of similar products that claim to do what I describe here. This is a description of what interests me, not a final and absolute endorsement.

Okay, enough fine print:

Medivizor is a startup that culls literature and other resources, including the social web. They select portions relevant to you (based on a questionnaire and your feedback), rephrase it in ordinary language, and send it to you. As their site says:

[Read more…]

By 3 Comments

New Hospital Safety Score data: a key enabler for informed choice

Comparison of five hospitals' data (click to open PDF)
Comparison of five hospitals' data from this report (click to open PDF)

This is cross-posted from e-patients.net.

The PDF at right is a summary of sample data from this new dataset.

The Leapfrog Group is a highly respected patient safety organization. They’ve earned a reputation for carefully and thoughtfully assessing providers’ actual performance in quality and safety. Their mission statement:

To trigger giant leaps forward in the safety, quality and affordability of health care by:

  • Supporting informed healthcare decisions by those who use and pay for health care; and,
  • Promoting high-value health care through incentives and rewards.

Today, Leapfrog’s affiliated organization Hospital Safety Scores announced a major update of its A-through-F grades of thousands of US hospitals, and new smartphone apps to access the data on the fly.

Predictably, the hospitals who got an F – based on their own data! – are saying it’s “not a fair scoring system.” Happily, Leapfrog follows the best practices of open science: they fully disclose all their data, the methodology they used, and who designed the system. This means all buyers of care – e-patients, families, employers – can examine the data and assess claims of fairness for ourselves.

The full press release is here. I won’t take time to go into it; many others are doing so –  here’s a current Google News search and blog search. Here, I want to focus on two aspects that are core to participatory medicine: understanding the data, and why this matters.

[Read more…]

By 6 Comments

Perceptions creating reality: the scapegoat dynamic and the role of the patient

TEDMED Great Challenge: Role of the PatientThis post brings together several threads from the past year’s work. At the core is one of the Great Challenges for TEDMED 2013: The Role of the Patient. Roles exist in a context, and a new perspective on this context came to light today.
_______________

Those who’ve seen me speak know I spend a lot of time thinking about the underlying structural issues that keep healthcare from evolving. In particular, leaders like Warner Slack MD have been saying since the 1970s that patients are the most under-used resource in healthcare.

But many in the profession can’t imagine that participatory medicine could be valid.

Why? Why do so many physicians, administrators and health policy people roll their eyes at the idea of patient as partner? (Many don’t, but many do.)

I don’t ask this as a whine, I ask it as an inquiry.

Paul Levy is the former CEO of my hospital, Beth Israel Deaconess Medical Center. He’s also the one who introduced me to Dr. Danny Sands, my famous primary physician, who practices at BIDMC, saying “You’ll probably like this guy.” Well, GOOOAAALLL!, as they say in soccer. Which Paul plays, coaches, and referees. (He’s skinny.)

Today on his blog Paul writes How a Team Degrades. It’s a tale of a Lean exercise his hospital used, which he connects to a recent soccer episode. And I see a parallel with the role of the patient.

The Lean exercise:

A group of colleagues sat around a table and were given a problem to solve.  Each person wore a hat with a label that could be seen by everyone at the table, except the person wearing the hat.  The label might say “whines,” “creative,” “combative,” “unintelligent,” or some other characteristic.

Strikingly, within just a few minutes, people at the table began to treat each person as though the assigned characteristic were true.

[Read more…]

By 13 Comments

New series: Understanding and Guiding Medical Research

With my doctor in an exam room
With my primary physician, Dr. Danny Sands, in a BIDMC exam room

Some edits made, and new items added, late the same evening.

I’ve recently learned of some well-intentioned medical research that disturbs me so deeply that I think it’s time to get formal about teaching e-patients and their partners how to detect research that misses its target, even if it’s well intentioned.

Doing this responsibly requires a deep understanding of the purpose of research and its methods. So this is the start of a series in which I’ll lay out what I’ve learned so far, describe the problems and challenges and opportunities that I see, and invite dialog on where I’m wrong and your own experiences as patient or clinician or researcher.

If this succeeds we’ll have a new basis for considering questions of what to do and how to prioritize it, in this era of change in medicine – not just in research but in all of medicine, as we work on reducing our spend. My goal in the series will be to be as clear in my writing as I can, while being as verifiably accurate as I can, given that I’m no PhD or Pulitzer laureate. Critique and correction are welcome.

This first post is an introduction, with background reading.

Context: Patient Engagement

[Read more…]