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Susannah Fox

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Archives for October 2009

Clinical Trial Data Rights?

October 29, 2009 By Susannah Fox 3 Comments

“If you expose human beings to an experimental treatment, the public has a fundamental right to see the results of those experiments.” – Steven Nissen, chairman of the cardiology department at the Cleveland Clinic, quoted in The Sunlight Foundation’s account of Bray Patrick-Lake, an e-patient who was left with only questions after a clinical trial […]

Filed Under: found on the net Tagged With: Cardiology Department, Cleveland Clinic, Clinical Trial Data, Experimental Treatment, Fundamental Right, Human Beings, Patrick Lake, Steven Nissen, Sunlight Foundation

Superheroes and rock stars at the Institute of Medicine

October 14, 2009 By Susannah Fox 7 Comments

Update: National Cancer Policy Forum published a book 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 this panel was captured in a short video. ___________________ The Institute of Medicine’s recent […]

Filed Under: key people, Why PM Tagged With: ACOR, Amy Abernethy, Annals Of Internal Medicine, Carolyn Clancy, Chordoma, Clinical Trials, Dartmouth, Emory, Gilles Frydman, Institute Of Medicine, Jamie Heywood, learning health system, Lynn Etheredge, Oncology, Paul Wallace, Transparency, Vanderbilt, Youtube

Participation Matters–Susannah Fox

October 2, 2009 By Susannah Fox 6 Comments

In politics and in health care, participation matters as much as access. The passion we saw in the political campaigns last year is matched by the passion we see when someone is trying to save a life, find a better treatment, or just manage the health of a loved one. What are you doing in […]

Filed Under: Why PM Tagged With: American Adults, Benchmark, chronic disease, Definition Of The Internet, digital divide, disability, health care, health information, Internet Connections, Internet User, Internet Users, Internet Wirelessly, Laptop Cell Phone, Medical Advice, Mobile Access, Mobile Adoption, Participation, participatory medicine, Passion, pew internet project, Political Campaigns, Voices

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  • Susannah Fox on Patient-led innovation: “Thank you! I’m very happy to know about your work and will add it to the list.” Feb 1, 09:19
  • Andrea Pauls Backman on Patient-led innovation: “Susannah, great list of patient-led organizations and programs, thank you. I would suggest adding a new, award-winning program co-produced by…” Feb 1, 08:58
  • Susannah Fox on Caregiver starter pack: “Thanks, Raj! You capture what I only implied: I wanted to send only what is absolutely necessary for this moment…” Jan 31, 12:38

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