Monday, September 27, 2010

Patient Advocacy in the News

Patient Voices in San Francisco October 6

Here's a great summary of the discussion by health economist Jane Sarasohn-Kahn

Patients 2.0 will be a very special meeting hosted by the Heath 2.0 Conference as part of San Francisco’s first Health Innovation Week. I'm looking forward to it!

Held Wednesday, October 6 from 3-6pm at the San Francisco Hilton in Union Square,
the meeting is free for patients, citizens and anyone passionate about improving healthcare, working both online and face to face.

at Patients 2.0
  • Patient-innovators and advocates will present novel ideas and new ways to think about our relationship to healthcare
  • Patients, caregivers and interested people can share their excitement about developments in patient education, empowerment, and care delivery
  • All attendees will be encouraged to join the discussion about next steps toward active patient and citizen involvement in health care improvements
Advocate/presenters include:
  • Regina Holliday, Medical Mural Advocacy Project
  • Amy Tenderich, DiabetesMine
  • Gary Wolf, Quantified Self
  • Gilles Frydman, ACOR
  • ePatient Dave de Bronkart, Laugh, Sing and Eat Like a Pig
Advance registration is requested. For more information call (415) 287-0740

Big Breast Cancer Advocacy
October is nearly here. How did breast cancer activism grow into a behemoth that commands consumer product campaigns and an entire designated month?

Much of it can be attributed to timing. Well-documented factors including wartime empowerment of women, baby boomer demographics and feminism contributed to societal shifts. 1980s AIDS activism is generally acknowledged as a founding model for today's breast cancer activism.

In The Biopolitics of Breast Cancer, sociologist Maren Klawiter cites "a culture of patient empowerment" in the 1990s that 
privileged the voices of women living with cancer and provided them with information, support, practical services and community. In addition, this culture pressured the state, public health, and medical researchers, the health care industry, the pharmaceutical industry... to more effectively address the needs of women living with this disease.
These roots are alive in October's Breast Cancer Awareness Month -- and in all of modern patient advocacy.

The Club Nobody Wants to Join
A few days ago I learned that a leader in breast cancer advocacy had herself received apparently her first diagnosis. Dr Marisa Weiss is the founder of She has chosen to disclose some information about her health in a video at the website. There she explains making treatment decisions that map very specifically to her situation and characterizes her prognosis as good. I don't know how to characterize the irony.

And as Weiss allows this shift in her public identity, another leader is setting aside part of her public image: fierce advocate Barbara Brenner will step aside after leading Breast Cancer Action for 15 years. To the best of my knowledge Brenner was last treated for cancer in the 1990s.

Although they have approached the problem from different perspectives both women have been tremendously effective. Now bound by personal experience with the disease, I wish them both well.

1 comment:

becky said...

Hi Eve!

Thanks for sharing such important information. We included your post in our Navigating Cancer blog roundup today. You can take a look at

Thanks! Becky