e-Patient Dave

Power to the Patient!

By Leave a Comment

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:

[Read more…]

By 55 Comments

The business of patient engagement: should consumers be regulated?

I edited the top portion at 8:14 pm ET, a few minutes after posting, adding the “key difference” paragraph. Sunday morning, added the Klick Pharma item under Income.

Last month in Cambridge I met Twitter friend Bryan Vartabedian MD (Twitter @Doctor_V) at a meeting at Vertex Pharmaceuticals. We’ll cross paths this fall on the conference speaking circuit. Today on his blog he raised a rowdy, rough, but valid point: as e-patients (obviously including me) get into the business, should they/we be regulated? He said:

  • Will industry be required to publicly list monies used for sponsorship, travel and swag support of high profile patients in the social sphere?
  • Should high visibility patients who serve as stewards and advocates disavow themselves of contact with pharma just as many academic medical centers have begun?

    • As is often the case, I don’t have an answer.  I’m just raising the questions.

Smart questions. My short answer:

  • Fine with me if industry discloses those payments. Nothing to hide.
  • Otoh, I think it’s nuts and counterproductive for consumers in any industry to disconnect.

Academic medical centers have tons of evidence of influence corrupting the academic processes that are at the core of (supposed) science. For patient advocates I don’t see that there’s currently a problem that would justify adding regulators, the ensuing budget impact, etc.

Besides, there’s a key difference: academics are supposed to vet industry. It’s their job in this context. Patients, on the other hand, are the consumers – the ones the industry’s supposed to serve.

As @Doctor_V suggests, healthcare is changing now that industry recognizes patients are worth engaging with. (I presume I’m one of his “high visibility” patients.) And this turned out to be the right time for some thoughts I’ve been meaning to express about my own work.

Introductory principles: [Read more…]

By Leave a Comment

e-Patient Connections: A business and policy conference with real value

I think e-Patient Connections is the highest value business conference for how patient engagement can transform healthcare. Conceived by former pharma marketer Kevin Kruse, last year it attracted a hybrid audience: almost half of attendees were in public health and non-pharma sectors. All came to understand connecting with empowered, engaged patients. It was a high quality event, with smooth logistics and facilities, despite being its first year with a skeleton staff.

This year I’m speaking in the opening keynote on 9/28, and I gladly agreed to participate in this new video. I want to say why.

As regular readers know (here and on my personal blog and e-patients.net), I think healthcare transformation is both a need and an opportunity. We desperately need to stop the cost spiral, we need to much more effectively connect clinicians’ skills with the patients and families who need them, and we need to improve quality and eliminate medical errors.

Innovation has turned many industries inside out – why not healthcare?  Because we’re missing something. When smart people work hard for a long time, unsuccessfully, it’s a good bet they’re overlooking something fundamental. I believe it’s that the engaged patient is a valuable and underutilized resource, and most businesses don’t get it. So they operate, leaving a worthy resource untouched. This resource blindness constitutes waste.

E-Patient Connections 2009 taught attendees how to understand the value of connecting authentically with e-patients. I encourage people to attend.

Full disclosure: I receive no fee from this conference, just travel expenses. My speech will be inside the keynote by Klick Pharma, a client who has me on a small quarterly retainer. I support this conference for exactly the reason I said – it’s a smart, valuable event, addressing a vital aspect of making healthcare more effective and more efficient.

By 8 Comments

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!