What evidence would you bring to convince cancer researchers and policy makers to pay attention to how the internet is changing health and health care?

That’s my challenge for the Dec. 14 meeting of the President’s Cancer Panel, “The Future of Cancer Research: Accelerating Scientific Innovation” (PDF of the agenda).

To start, I’m boiling down my latest research to its essence:

I am also reviewing my notes on other people’s research and perspectives, such as:

  • Erin McCartney’s essay on how the Palo Alto Medical Foundation created a Patient-Driven Cancer Patient Advisory Council.
  • Andrew Schorr’s essay on Patient-Experts at Medical Conventions.
  • Bill Claxton’s essay on taking his complicated cancer treatment into his own hands.
  • The National Cancer Institute’s Health Information National Trends Survey (HINTS), which finds that people’s “trust in information from healthcare professionals had increased while their trust in health information from the Internet had waned” between 2002 and 2008.
  • The Center for Studying Health System Change’s 2008 report, How Engaged Are Consumers in Their Health and Health Care, and Why Does It Matter, which found that, of all those living with chronic conditions, cancer patients are the most likely to be “activated.”

And I’m remembering the last time I participated in a high-powered cancer research discussion:

  • The Institute of Medicine’s October 2009 workshop on building a rapid-learning system for cancer became, for an hour or so, a seminar on participatory medicine.
  • A book was based on the workshop, A Foundation for Evidence-Based Practice: A Rapid Learning System for Cancer Care, which you can buy, read online for free, or download as a PDF.
  • The discussion portion of our panel, which included Gilles Frydman of ACOR.org, Simone Sommer and Josh Sommer of the Chordoma Foundation, and Jamie Heywood of PatientsLikeMe.com, was captured in a short video.

What else would you bring to the table?  What points would you emphasize?

 

 

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