• Doctors & Patients
• Adam Clark, Ph.D.
• Michael Caldwell, M.D., Ph.D.
• Paula Kim
• Laura Doherty-Reynolds

Adam Clark, Ph.D.

Lance Armstrong Foundation

Adam Clark, Ph.D. is the Director of Research and Policy at LIVESTRONG, a cancer advocacy organization founded by Lance Armstrong, where he oversees the research agendas and policy positions of the Foundation. Dr. Clark also serves on the Biomarkers Consortium Steering Committee for cancer biomarkers at the Foundation for the NIH. In 2009, he was appointed to the Federal Advisory Committee for Health Information Technology Policy where he helps generate recommendations for a national health IT strategy.

In this interview from October 2009, Dr. Clark discusses the role of patient advocacy organizations as catalysts for personalized medicine adoption.

Q: What role do patient advocacy organizations take in advancing the use of personalized medicine?

A: We serve in a unique position as a center of trust for our constituents by disseminating information that is trustworthy and reliable. That is going to be incredibly important. In the area of personalized medicine, we can play a huge role in educating patients on its benefits. We can also serve as watchdogs to make sure that the diagnostic tests are vetted in the appropriate manner and that their primary purpose is to improve patient health. We know from some of the initial data coming in that the overwhelming majority of patients want to learn more about molecular profiling and molecular diagnostics and using these tests to improve their treatment and overall health. Patient advocacy organizations can serve as an honest broker between the scientists, clinicians, and patients in promoting personalized medicine.

Q: Historically, patient advocacy organizations have supported their causes primarily through donations to research or policy statements. Do you think that they are taking on more of an activist role in driving the development of treatments and new approaches?

A: I do see in the years to come that these advocacy groups will be play a greater role in moving medicine forward. There is a lot excitement about advanced programs such as The Cancer Genome Atlas, for example. In fact, many of the cancer groups out there are strongly pushing the government for their own cancer genome atlas targeted to their own particular cancer. For new diagnostics used in personalized medicine, scientists, clinicians, and patient advocates will be working together to develop the tests, and then work closely with the FDA to make sure these tests are clinically valid and capable of improving patient health.

Q: So what is the Lance Armstrong Foundation specifically doing along these lines?

A: We are engaged in several areas. For example, we advise the Office of the National Coordinator for Health Information Technology. We have a strong interest in linking research to patient molecular profiling and clinical data, to create a learning health care system where the patient can go into the doctor's office, be made aware of what treatment is best for them, and have the outcomes fed back into the system. LIVESTRONG is trying to be a force behind a new generation of medicine, where the patient is actually empowered, with the physician, to design treatment programs that are best for them.

Q: If a cancer patient wanted to be involved in personalized medicine research related to their disease, or make sure their disease is fully characterized and treated for their profile, where would they start?

A: At LIVESTRONG we have what's called our SurvivorCare Program that you can reach at a toll-free number (866-673-7205). You can also get more information by visiting our website. We also work with a company called EmergingMed, which helps to assign patients to clinical trials that match their particular profile. They are now getting into the area of molecular profiling of these diseases, and they are finding that roughly 90 percent of the people who contact them want to learn more about personalized medicine treatments for their particular disease.

You can also connect with centers across the country, which have launched programs specifically to explore and disseminate personalized medicine practice. For example, the Moffitt Center has launched the Total Cancer Care program in Florida and neighboring states. Using genome sequencing, they will design treatment options for over 18,000 patients (that number is still going up) and track their health throughout their lives. The data will help them to identify what molecular characteristics distinguish responders from non-responders to a treatment.

Q: Do you have any examples that you can share of personalized medicine making a difference in the life of a cancer patient?

A: Most people don't know this, but when Lance was diagnosed with metastatic testicular cancer, he was given one treatment option that he found out would have a side effect of lung toxicity, something that could have affected his breathing capacity and his career as an athlete. He had to do his own searching to find other options. He finally found Dr. Einhorn in Indiana, who was able to treat him under a different protocol with a treatment that didn't destroy his lungs. So as we look at personalized medicine, we have to remember that it also needs to be about the quality of life of the patient. There may be treatments already out there, but they may have side effects that are going to be viewed differently by different people. We need to move beyond a one dimensional measure of treatment success and capture data on the quality of life with any of these treatments.

View of the Expert posted October 2009