On June 29, the Cancer Moonshot initiative hosted a summit in Washington, D.C. as part of a national day of action that included more than 250 events in communities across the United States. I was honored to be invited to share my experience as a survivor and advocate and to participate in a private roundtable discussion with Vice President Biden as part of this gathering of researchers, providers, patients, and technology experts from around the country whom the government has called upon to help “make a decade’s worth of progress in five years.”
The day included a series of panels and workshops intended to white board strategies for doubling the rate of progress in the prevention, diagnosis, and treatment of cancer. It was the largest event yet in the year-long cancer initiative launched by President Obama at his State of the Union address in January.
While the Summit brought some significant announcements – for example, the Food and Drug Administration’s creation of a new oncology center of excellence to be led by Dr. Richard Pazdur and the Centers for Medicare and Medicaid Services’ announcement of a new pilot program designed to help patients pay for cancer treatments – it also felt a lot like a homecoming pep rally. Stalwarts from across the cancer community reunited to celebrate their collective progress and map out next season’s play book.
Though I did not return with any profound learnings that impact the Foundation’s agenda per se, the event reinforced for me that conditions have never been more conducive to bring about better treatments, better care and better experience that we desire for chordoma patients. The energy and enthusiasm on site was contagious, and my main take-away was the reassuring message that we, the patient community, are no longer viewed as ancillary to the R&D ecosystem, no longer an afterthought or a “nice to have,” but as true co-equal partners in moving research forward.
Here are a few reflections from the summit:
- The voice of the patient is everywhere: It was clear to me that the inclusion of patient perspectives in every discussion and breakout was very much intentional. From the morning session on optimizing care to the afternoon roundtable on accelerating research progress, the critical role of patients and patient foundations in advancing research was recognized and celebrated. In fact, Vice President Biden, who spent the whole day at the Summit participating in workshops and absorbing information, dedicated nearly half of his time to listening to the needs of patient organizations. That’s pretty incredible when you think about it. Even with CEOs of major pharmaceutical companies and heads of prominent research institutions in the room, the VP made a point to ask for and listen to input from patient groups, from the most common cancers to the rarest. That speaks volumes.
- Collaboration and sharing are the zeitgeist: There is increasing recognition that some of the most significant barriers to progress against cancer are not scientific, but rather human. It typically takes years for research findings to be published. Clinical data remains siloed within institutions, hampering patient care and research. Companies duplicate investments and repeat mistakes made by competitors. But, I’ve noticed a shift in the past 5 years towards a greater propensity for collaboration within the cancer research community, and the need for even greater collaboration was highlighted repeatedly throughout the summit. Whereas in the past, such proclamations at other gatherings may have seemed empty, they are starting to be backed up by action, and a loud chorus of support from every key stakeholder group. For more on this trend, visit our friends at FasterCures, who have been tracking and fostering cross-sector, cross-disease, cross-institution partnerships for several years.
- Research and care are being desegregated: Traditionally, clinical care and clinical research have operated in different realms. Clinical trials rigorously designed to test a specific hypothesis under specific conditions are where learning happens; the clinic is where patients benefit from that learning. But, the learning cycle in this model is long; many patients are left out of clinical trials; and the real world is much more fluid and inconsistent than the carefully controlled setting of a clinical trial where treatments are tested. Moreover, many patients actually benefit from clinical trials, which can provide access to promising new treatment superior to any standard therapy. In light of these realities, there was significant discussion at the summit about the need to increase trial participation by more seamlessly meshing clinical trials with clinical care (for example, by enabling transfer of data between a patient’s chart and research records, or providing decision support algorithms to physicians to encourage more consistent referrals to clinical trials when appropriate). There was also much conversation about the need for a “rapid learning” healthcare system in which knowledge is gleaned continuously from real world patient experiences – rather than periodically after the completion of a clinical trial – and lessons quickly put into practice to enhance patient care as soon as possible. Companies like Flatiron Health are leading the way in this sea change, promising to dramatically increase the pace of improvements in cancer care.
Time will tell if these trends persist, but I, for one, am optimistic that the patient community – our community – will continue to drive some of the boldest and most impactful advancements in cancer care and research in the years ahead.