WSJ BLOG/Health: Working Toward a New Social Contract for Health Care
First Published Tuesday, 17th April 2012 10:34 pm - © 2012 Dow Jones
(This story has been posted on The Wall Street Journal Online's Health Blog at http://blogs.wsj.com/health.)
By Amy Dockser Marcus
In the long struggle to figure out how to get new therapies quickly from the lab to the clinic, Susan Desmond-Hellmann has seen almost every side.
She's the chancellor of the University of California, San Francisco, so she knows about the challenges faced by academic researchers and scientists who are often frustrated in the effort to get grant money to support cutting-edge projects. Before that, she was president of product development at the pharmaceutical company Genentech, which during her time there got cutting-edge targeted therapies to treat cancer, such as Avastin, Herceptin and Tarceva through the arduous, expensive FDA-approval process. A board-certified physician in internal medicine and oncology, she also used to treat people with cancer.
In an editorial published last week in Science Translational Medicine, she discusses a new data network described in a National Research Council report that could more quickly get the benefits of new discoveries to patients. (She was a co-chair of the committee that authored the report.) Low-cost, whole-genome sequencing and other advances are revealing much about the biology of disease, but she says for that knowledge to make a difference for patients, a new social contract is needed.
Below, she tells Health Blog more about how this might look. The comments have been edited.
The Wall Street Journal: What does the current social contract in medicine look like?
The current contract is people sign up for a clinical trial or a study, without expectation that they may benefit. The real question is, does the...whole basic- and clinical-research enterprise, does it help me? If we could change the system to make it more dynamic, then maybe it could actually help you.
Why is a new social contract needed?
One of the things low-cost, high-throughput sequencing and the focus on biomarkers has done for us -- particularly in cancer but increasingly across medicine -- is it enables us to do something we were rarely able to do before: have the backbone of research be human biology. How easy or difficult is it to access the research enterprise to the benefit of that patient? If there is an ongoing research project, what are the barriers between that directly connecting to clinical care? As research becomes about human biology, we are increasingly going to have those sorts of questions.
The National Research Council report describes the creation of a knowledge network. What would it look like and how would it benefit patients?
We talk about this Knowledge Network database having two different levels. One is a research-level database.... The database would also have a second level, which is validated evidence that the FDA or other regulators or the American Heart Association or the American Cancer Society has blessed this biomarker for this tumor or this drug-safety marker. The two levels are a research level where it is pretty messy and hypothesis-generating and then a clinical, ready-for-prime-time level. Clinicians could look at the latest information then bring it to bear on patients with a simple, straightforward discussion: Is this proven or is this a theory?
How would this benefit patients?
When we were writing the report, we got into this discussion about Google Maps. What was interesting about Google Maps is how dynamic it is. If you go someplace and they put a new street...it is updated for the new road. You can get into it and search it and find something in real time. What if medicine worked that way and instead of a new street, it's a new biomarker, and I have access to that pace of knowledge that could benefit the patients I am caring for?
What is the patient's responsibility to drive change?
Some patients will get on Facebook and start a movement.... But there are other patients -- other cultures, other individuals -- who say: 'Make sure I don't suffer.... I want to have a life with my family.' It's all good. Nobody needs to change their personal culture of what is comfortable. What makes me uncomfortable is the government or the medical enterprise saying to the patient, 'we are going to protect you from x, y, and z,' without spelling out the implications. Every time you treat a patient or conduct research, there is risk and it needs to be balanced by a benefit.
And what should the new social contract be?
As a patient, I would want the contract to be: I donate my sequencing and clinical information to a data base.... I am happy to participate in it and my expectation is not only is there opportunity for me to personally benefit from it as new therapies and new markers are created, but also that future patients and my family would benefit from it. The contract is: I give and I get.
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