High Times for Patient Advocates

Back in 2004/2005 when I started this blog, who would have thought that patient bloggers and advocates would soon be flying around the country as honored speakers at forward-thinking health events?  Look how far we’ve come, and I’m very excited to be part of it!

A few relevant dispatches from the ePatient world today:

D-OC members Manny and Kerri have just returned from speaking at the ePatient Connections (ePC) conference in Philadelphia, which brings together “experts from life sciences, public health, hospitals and also doctors and nurses to benchmark best practices for reaching and supporting digital health consumers.”  Read a nice summary of what actually happened at that event last week by my friend, the leading health economist Jane Sarasohn-Kahn, by clicking here.


Roche Diabetes has just posted a case study presentation about the Diabetes Social Media Summit they hosted this summer (which I helped develop!): click here for the PDF.  Notable are the pharma company’s “lessons learned” from the first D-SM Summit held in summer of 2009.

We basically told them what’s required for any vendor to productively interact with the patient community:

• Enter (our world) with valuable information
• Don’t only talk about yourself
• Be transparent and honest
• Keep it real
• Address the costs of diabetes {or insert any condition}
• Actively advocate for the patient community
• Help the community amplify its voice

Yes! Nice to know they were listening.


This very week my hometown of San Francisco is hosting the first-ever Health Innovation Week, including the city’s annual Health 2.0 conference. I love the Health 2.0 event, and have spoken many times there as a representative of the patient viewpoint, but it really is more slanted towards developers of health technology tools. It’s a place for them to learn and network about what’s being built, and how they might collaborate. This is important in its own right, but pretty removed from the day-to-day stuff we patients deal with.

So this year for the first time, the team has organized a special, separate session the day prior called the Patients 2.0 Workshop. I’ll be taking part in a panel alongside advocates for different types of cancer and rare children’s diseases, plus one representative from the MIT Media Lab (doing some really innovative stuff in “new media medicine“).

The workshop will happen this Wednesday from 3-6pm at the San Francisco Hilton in Union Square, and is FREE for patients, citizens and anyone passionate about improving healthcare — so if you’re in town, I hope you’ll join us. Advance registration is requested.


The huge BlogWorld conference is coming up Oct. 14-16 in Las Vegas — this year with a special track focusing on “Social Health” thanks to relevant sponsors including my friends at Alliance. I’m excited to be part of that, along with (again) Manny and Kerri, and some other passionate patient-advocate friends including Trisha Torrey and Jenni Prokopy of Chronic Babe.

The session I’m taking part in, along with Trisha and Jenni, takes place Thursday, Oct. 14, from 11:00am – noon; it’s called “Patient Blogging and Disease Awareness: Sickness and Health on the Web.” Among other things, we’ll be discussing the fact that the influence of patient bloggers and online advocates has grown to the point where we’re being approached by the pharmaceutical industry to become involved in sponsored initiatives. Does this mean a larger voice for patient experiences and viewpoints, or does it hinder trust in independent patient voices? I hope it’s the former, but I love that we’ll be having this conversation in an open setting, with bloggers from all walks of life weighing in.


The following week in Boston is the 2010 Connected Health Symposium, Oct. 21-22, at the Boston Plaza Hotel & Towers. It’s organized by the Center for Connected Health, a “future of health” innovation think-tank of sorts that’s a division of Partners HealthCare in Boston.  The program of this symposium includes a bunch of prominent journalists conducting live on-stage interviews with various experts — including now-famous patient advocates like Dave DeBronkart aka “e-Patient Dave,” who recently published a book called “Laugh, Sing, and Eat Like a Pig,” which he says is “a book about hope, getting it in gear, and going ‘e.’ … As in e-Patients are now ‘empowered, engaged, equipped, enabled, and educated.’”


In truth, there’s never been a better time in history for patient advocacy. Speak up for yourself and others about what we want and need in health care. And know that important decision-makers in Pharma, the HC Industry, and Health Policy are (finally) listening!


btw, if you’re interested in following the topic, Twitter hashtags to look for: #epatients, #ePatCon, #hcsm, and #ehealth.