e-Patient Dave

Toward a New Science of Patient Engagement

By 17 Comments

Give patients (that’s you) access to all their (your) data – so they can help

I’ve just returned from Toronto, where I gave the opening keynote at the Medicine 2.0 Congress. It was titled  “Gimme My Damn Data,” which is an unconventional title for an opening address, but I meant it. Here’s why.

Thanking Gunther Eysenbach for inviting me
Thanking Dr. Gunther Eysenbach for his extraordinary decision to have a patient open a medical conference

A new world of participatory medicine has been growing for years, largely unnoticed. In this new world, healthcare is not a one-way street: empowered patients are engaged in their care, actively collaborating with their physicians, sharing responsibility for their care. The providers (doctors, nurses, etc) are still the providers, but the patients share in both the knowledge and the responsibility for how it all turns out.

And, certainly, the decision making.

This requires that patients have access to their medical data. (Whose data is it, anyway?) As my primary physician Danny Sands, MD MPH, says, “How can patients participate if they can’t see the data?” But in today’s world (America and, I’m told, many other countries), access to our health data is anything but easy.

In the USA the HIPAA act guarantees that we can get it – but it can take months, which is absurd in a crisis. And, law or no law, Deven McGraw of the Center for Democracy and Technology reports that problems with data access are the #5 complaint #3 HIPAA complaint* reported to the Department of Health and Human Services.
* Deven updated this in an email, saying “it’s consistently the third based on this HHS source.”

Clearly, what patients want and are asking for is not an accomplished reality throughout the world today. This is unacceptable. Lives are at stake. I think people – especially sick people – have a right to take their records and seek care elsewhere. (And that’s beyond the basic issue of a person having access to their data on general principle. Imagine if you couldn’t see your banking information!)

Some providers are great about this. My own medical records, which I can read anytime, are on PatientSite at Beth Israel Deaconess. But there’s still no way for me to get all the data out: I can export some information, but not all. And my hospital’s much better than most: most have no way at all to give you your data – except by fax machine.

There are many technical issues to be ironed out, not the least of which is what format the data should be in. I want to participate in projects to make something happen in this area, something all citizens can get their hands on. If you’d like to partner with me on such a project, contact me.

My slides from the talk should be online within a few days. I’m glad to say that my talk was well received, but to a certain extent I was preaching to the choir. We have much work to do.

So yeah, I meant it: give us our data, and I meant it strongly. No kidding: unleash our data!

It’ll take time. Let’s get to work.

—Addition 9/22/09:

I do this with some trepidation, because the slides are not the talk, they’re just the visual aids. But so many people have asked, I’m posting just the slides.

I also haven’t taken the time to touch up the animations and slide-to-slide transitions; if a slide doesn’t change after 5 seconds, click or right-arrow. (Some of the animations are subtle, e.g. the bursts that show where my metastases were.)

By 6 Comments

Ushering in the Era of the Participating Patient

I hereby hang out my shingle: e-Patient Dave for hire. Call me.

ePatient Dave business photoI’m launching my consulting business in the new world of healthcare, especially patient engagement, personal health records, data quality, and related policy. What I do:

  • Compelling, motivating speaker and writer
  • Voice of the engaged patient
  • Policy advisor on
    • how technology can and should affect healthcare transformation
    • disruptive innovation: how it creates progress, how to manage it, how to survive its risks
    • personal health records

Healthcare is changing, especially in America. As the nation wrestles with the complex political and financial issues that paralyze talk of reform, a separate front advances steadily: patients are becoming engaged in their care.

Gone are the days when patients were passive recipients of care dispensed by healthcare providers in a one-sided “doctor knows best – and patients know nothing” model. Today engaged patients participate in their care, in an empowering partnership with nurses, physicians, staff and organizations who understand the new model.

A new, collaborative partnership.

It’s not that “doctor knows best” has turned into “patients know best.” To the contrary – this new relationship is a collaborative partnership, in which both parties feel more fulfilled.

But adjusting to this can be a challenge. How can providers, policymakers, care system creators and patients learn to dance to this new music? And health IT will play a vital role, especially patients’ ownership of their own data in personal health records (PHRs). All these are areas where I intend to “make a living by making a difference.”

Browse the site. Bring friends.

“e-Patient Dave” deBronkart is a high-tech marketing executive who has studied technological change (and how people deal with it) for years. In 2007 he succeeded in beating a near-fatal cancer, and has gone on to apply his analysis and communication skills to the new world of participatory medicine.

In 2009 Dave and his primary physician, Dr. Danny Sands, MD MPH, were elected founding co-chairs of the Society for Participatory Medicine.

A passionate spokesman for the cause, he lives, writes, and works in Nashua NH, near Boston’s Route 128 high tech corridor, where he is Director of Marketing Analytics for TimeTrade Appointment Systems. For more detail on Dave’s story, see the About page.