Given the evidence that people are ready, willing, and able to engage in online discussions about cancer prevention and treatment, what steps are being taken to ensure that the U.S. (and the world) does not miss this latest opportunity for education and discovery?

The Pew Internet Project‘s latest report on health and health care, Cancer 2.0, provides evidence — and questions such as the one above — for the President’s Cancer Panel to consider.

This paper is a direct result of a discussion held on e-patients.net which convinced me that I needed to reiterate some past research findings and draw people’s attention to some upcoming data points. Thanks for all the input!  I’ll let you know how the presentation goes tomorrow.

Update: It went well!  Here are some notes from the other speakers (and stay tuned: I hope to add their slides, too).

Naz Sykes, executive director of the Dr. Susan Love Research Foundation, kicked off the meeting with her presentation: “Army of Women: A Paradigm-Changing Research Resource and a New Model for Democratizing Research.”

I enjoyed her forthright explanation of how Army of Women works, its strengths and shortcomings. It is a “just in time” resource for basic scientists and epidemiologists who need biological samples and/or information for breast cancer research (and yes, they intend to expand the model to other diseases). They want to help people go beyond fundraising, beyond pink ribbons, and partner with them for research. By doing so, they educate the public about clinical trial participation and scientific research. Check out armyofwomen.org.

Downsides: 85% Caucasian, 3% AfAm, 3% Latina, 1% Asian, 8% other. Recruitment is English-only because researchers aren’t prepared to work with Spanish-dominant respondents. They intend to optimize their site for mobile devices to take advantage of the popularity of wireless access among minorities. Privacy came up during the Q&A, but only briefly: “Privacy has never been an issue in our follow-up studies.”

Bradley Malin, director of the Health Information Privacy Laboratory at Vanderbilt, presented next: “Repurposing Clinical Data for Cancer Research with Formal Privacy Protections.”

As he put it, “Health care providers are stockpiling enormous amounts of patient information. Many want to shrae data for a variety of worthwhile purposes, such as cancer research. The big buzz word is ‘secondary use.'” But we need to address privacy issues now so we don’t let HIPAA and a misplaced fear of re-identification of individuals block our path. A headline for me was his critique of Paul Ohm’s “Broken Promises” article, which I wrote about last year. Malin says that Ohm exaggerated the threat and caused damage to the field by scaring people when, in fact, “distinguishable does not equal identifiable.”

His closing slide outlined some open challenges:

It takes time and energy to appropriately model risks…but we should do it.

  • We need to train experts (my handwritten note: Understatement of the day!)
  • May require national centers of excellence
  • We need to support longitudinal studies, possibly across multiple datasets (aka, anonymous linking)

We need to determine what is an acceptable level of risk

  • Dependent on data type
  • Dependent on person
  • Dependent on organization

As he said, “HIPAA treats everyone with a broken pinkie the same as everyone with breast cancer.”

One panelist asked if his proposals would add yet another bureaucratic layer to clinical trials. The opposite, Malin replied. This is for retrospective studies, not prospective, and actually simplifies the HIPAA burden by removing the need to repeatedly ask people’s permission to use the data.

Raj K. Puri, director of the FDA’s Division of Cellular and Gene Therapies, was next up with “Challenges and Opportunities in the Development of Cancer Vaccines and Immunotherapy Products.” I confess I didn’t take any notes — not because it wasn’t interesting, but because it was far from my area of expertise.

I spoke next and you can read my paper, Cancer 2.0, to get the gist of what I said.

Ellen Sigal, chair and founder of Friends of Cancer Research, then gave a tour of the problems facing cancer research, calling for a comprehensive plan and the breaking down of institutional barriers so that researchers can work together.   I found it curious that her call for collaboration — either “Tear down the silos” or “Tear them down,” I’m not sure —  is trademarked. I put my pen down after that.

Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania School of Medicine, spoke last on “The high cost of new cancer treatments: can evidence help us ration?”  He was a quote machine:

  • “Our values help us interpret the evidence.”
  • “Politicians have shown no real stomach for data.”
  • “A ‘good’ physician is a zealous advocate who provides options and gets informed consent. But we act as if evidence alone will end disputes.”
  • “Autonomy beats futility. Evidence of no efficacy does not stop care in court decisions. And when you are treating dead people, you are pretty far out on the spectrum of evidence-based medicine.”

He calls for a “stewardship” model for the doctor-patient relationship, making it OK to not try every treatment and letting patients know that choosing to stop is just as courageous as fighting to the death.

I found his closing remarks particularly fascinating. As he put it, “We have a strong narrative of rescue in this country. We thrill to the Chilean miners’ rescue and we love pulling babies out of wells. We’re not so good at making mines safer and putting a cap on the well.”  He asked, essentially, should we fund rescue of the few, the long shot? Or should we fund an increase in quality of life enhancement? Maybe, as he put it, we shouldn’t try to save every single person, at great public cost. Maybe private funding is the way to go: “Torture the rich and have them underwrite the costs of clinical trials for a chance at rescue.” He continued that we need to foster public discussion about where we spend our resources:  our money, our time, our quality of life. If we don’t, he said, we can’t have an evidence-based system.

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