Vice President Joe Biden took a bold step during his cancer summit when he threatened to cut federal funding to researchers who fail to quickly share clinical-trial data.
While I applaud his words, I hope he backs them up with action. After months of campaigning to encourage the medical community to collaborate, it has become clear that self-interests are so ingrained that they won’t change unless forced to do so.
We have the opportunity to make unbelievable strides in our fight against the malady we call cancer. But it will require a collaborative effort between government and the private sector – one devoid of the bureaucracy and competing interests that have derailed similar efforts in the past. And one with a resolute focus on the benefit for patients.
We are at a critical moment. Never before have we had access to such rich data to help identify promising precision treatment for individual patients. Never before have we had the capacity at both the information system and biological levels to collect, store and mine critical data. Harnessing data in a way that truly benefits the patient, however, will require a major shift in our thinking.
The conversation around this topic has reached a feverous pitch recently thanks to the noble efforts of many, including Biden and his “Moonshot” initiative with the National Cancer Institute (NCI), the American Society of Clinical Oncologists (ASCO) and its CancerLinQ database, as well as numerous additional efforts underway to collect cancer treatment information. This increased awareness and attention toward the fight against cancer is exciting.
But much of this crescendo is just noise. How do we move beyond the rhetoric to find a solution focused on the patient?
The only database project worth our collective attention is one designed with the patient in mind, devoid of commercial gain or proprietary research value. We have the opportunity to revolutionize cancer care. Instead, what we’ve seen is a massive jockeying for academic milestones, sales goals, product development, and research conducted for the benefit of the researcher. Too many special interests are involved, and too many are striving for their own agendas. The patient becomes secondary in this equation.
In an effort to double the rate of progress towards curing cancer, Biden brought together researchers, oncologists, care givers, philanthropists, data and technology experts, advocates, patients, and survivors to discuss how cancer affects them and generate ideas about how they can better engage in the Moonshot initiative.Thousands of people attended 270 regional summits around the country. Dozens of novel initiatives between federal agencies were announced and pledges were made to raise more money for research.
What we need, however, is for Biden to focus more of his efforts on convincing Congress to act. It’s Congress – urged by the American public – that has the power to create a truly robust, patient-focused database.
Here’s how: if taxes are being used to fund cancer research, the public can demand that the federal government require every detail of that research – down to the genome – is shared in a collective, transparent and accessible database that is compliant with all HIPAA regulations.
To win against cancer, every provider of cancer care, every academician studying treatment options, and every oncologist must come together in a unified effort to share information. It must be a completely open database, one in which everyone can participate with the knowledge and information sharing that will be available to all. If one penny of government funding is used in this effort, participants must be required to share. Everyone must have access—period. With open access to this kind of information, we can dramatically revolutionize the course of cancer care.
Free enterprise can still prevail. Collecting information in an open forum won’t hinder commercial interests from pursuing opportunities for new treatment options. The goal is for government regulators, physicians, and insurers to have equal access to information. That will cut down the timeframe to get the right treatment to the right patient from decades to months. Pleading for and allocating budget dollars to the database won’t be enough. Congress alone can ensure we have a robust, patient-focused database. That is the only conversation worth having.
Let’s make it happen for cancer patients today. We’ve all waited far too long.
Maurie Markman, M.D. is President of Medicine & Science at Cancer Treatment Centers of America.