e-Patient Dave

Power to the Patient!

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How Patient-Provider Engagement Can Transform Patient Safety (new article in PSQH)

I’m honored to be the author of a new article in Patient Safety and Quality Healthcare magazine (PSQH): “How Patient-Provider Engagement Can Transform Patient Safety.”

It’s a companion to a Special Interest Keynote titled “How Patient/Provider Engagement Can Transform Healthcare,” which my primary physician Dr. Danny Sands and I will deliver December 7 at the Institute for Healthcare Improvement (IHI) Forum in Orlando. It’s my cancer story as seen from our two perspectives, as physician and patient, in the age of the internet.

Earlier versions of the talk have been titled “Illness in the Age of ‘e’,” but this event calls for a change – because participatory medicine is now a full-blown movement, with its own medical society, with its Journal of Participatory Medicine as well as the e-patient blog. Plus, significantly, patient and family engagement is now part of Federal policy – it’s one of the “meaningful use” requirements for providers to earn financial incentives in the coming years.

Clearly, the age of participatory medicine – of patient/provider engagement – has arrived.

An early ally of the movement was Susan Carr, editor of PSQH. The patient safety movement clearly sees the value of patients and families being actively engaged in all aspects of care, so we talked this summer about how we really ought to do something together. Then we realized, the subject of our IHI keynote applies perfectly to patient safety, an important part of healthcare.
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Patient & Family Engagement for post-traumatic stress and traumatic brain injury, especially military families

I spoke this morning at an event outside Boston hosted by NAMI NH, the New Hampshire organization of the National Alliance for Mental Illness. The subject was “Best Practices in Mental Health, Prevention and Wellness for Military and their Families,” and to be blunt, a major issue is suicide prevention among veterans.

This video cites that in 2009, more veterans killed themselves than all the active duty soldiers who died in Iraq and Afghanistan combined – and many vets with war-related mental problems aren’t getting any services. Whatever your political views may be about the military actions themselves, this is a human tragedy.

I spoke about the patient engagement movement, starting with citing my own father’s service in World War II and my father-in-law’s – he returned not well, and though we can’t diagnose the dead, his lifelong explosive anger sounds like today it might be called PTSD. (I emphasize that we can’t know.)

Below are my slides. I sure wish my voice recorder wasn’t out of batteries – a lot was said that’s not in the slides. At bottom are the URLs for the resources I talked about.

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How to improve healthcare faster: a TEDMED minute

This past week I was thrilled to attend TEDMED, the medical offshoot of the famous TED conferences. (TED = Technology, Entertainment, Design.) I was invited to be one of the analysts sponsored by the Robert Wood Johnson Foundation (RWJF) Pioneer Portfolio, my kinda people: “The Pioneer Portfolio is powering ideas to transform health. We accelerate the trajectory of innovation … supporting exploration and helping great ideas to gain momentum. Pioneer focuses on the future, seeking breakthroughs with the potential to generate significant health and social impact.” Huzzah!

The Pioneer Portfolio funded the creation of the e-Patient White Paper, which blew my mind almost three years ago and set me on this path. (That paper’s at top right of www.e-patients.net.)

At TEDMED RWJF asked the analysts (and anyone else!) to record brief, informal videos on how to improve healthcare fast.  Here’s mine:

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When a patient speaks to patients

As I build my new career in healthcare, speaker fees are my main income. Here’s one I did for free.

Usually when I speak, one of the first things I have to say is “Trust me, your time will come. ‘Patient’ is not a third-person word.” Well, I got to skip that part in June when I spoke to a bunch of people who already have my disease. And boy did we surpass the normal subject matter.

The event was the third annual Kidney Cancer Symposium sponsored by the DF/HCC, aka the Dana Farber / Harvard Cancer Center. That mouthful includes my hospital, Beth Israel Deaconess. Speakers included my doctors, surgeon Andrew Wagner and oncologist David McDermott. (With MDs and Mxxx’s up the wazoo; I love those guys but I gave up on keeping tabs on their credentials. To me they just saved my life.)

They invited me to speak about being an e-patient. Couldn’t turn THAT one down. 35 minutes:

Immense thanks to them for making this event FREE (including lunch) to all patients, and offering the video for free distribution to all who weren’t there.

They say the videos of other talks will be available on their site shortly – with full credentials for the doctors, probably. :–) Thanks to them for letting me have it first!

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“Laugh, Sing, and Eat Like a Pig”: my cancer journal

Front cover Full title: “Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and what healthcare can learn from it)

This book is a digest of the cancer journal that I kept on CaringBridge.org in 2007, when I almost died of Stage IV kidney cancer, but survived. It’s my real-time notes about what it felt like at the time, especially how I used my attitude and mind to help all the medical efforts the doctors and nurses were doing. I had an incredibly supportive community of friends and family who posted responses every day, and many of those are included too.

What’s the title about??

It’s the approach I chose to take to the news that I had a lethal cancer – a summary of the advice I got in the first few weeks after diagnosis, before I even started my journal:

  • “Laugh” is for the healing power of laughter, as famously discussed by Saturday Review editor Norman Cousins in his book Anatomy of an Illness as Perceived by the Patient
  • “Sing” is the advice my doctor gave. I had asked if I should drop out of my much-loved championship chorus to save energy, but he said, “You don’t want to stop doing life activities that you love – it sends the wrong message.” Wow. So, okay, laugh and sing! Not bad. (More on what “Sing” meant to me in this post.)
  • “Eat like a pig” refers to the diet the hospital sent me, to increase my caloric intake, to combat weight loss and prepare for the battle ahead.

In my online community I told people “If I ever write a book about this, that’s what I’ll call it.” And I did.

Admittedly, that’s not a conventional approach to a deadly disease. But that’s the point. And the whole story’s true.

Why a book with this message?

4,000 people a day (in the US alone) discover they have cancer, and face that moment of “What on earth do I do NOW??” I know that feeling. Some look for what to do next; others don’t even think they can do anything — they just think they’re screwed and go into depression. This book is about hope, getting it in gear, and going “e.” (E-patients are “empowered, engaged, equipped, enabled, and educated.”)

What’s the vision?

I’m committed to a world where healthcare works better – and not just for patients but for the people whose work is to deliver care. I agree with the words of Warner Slack MD, who said patients are “the most under-utilized resource” in health IT, and I think it applies to all of healthcare.

Healthcare today has unprecedented challenges. Let patients help (which a year later became my TED Talk, then my next major book).