For thousands of U.S. medical students, March 16 is the day they will find out where their next steps will be in their pursuit of saving lives. These new clinical leaders are entering a quickly transforming world. Big data and artificial intelligence are on the cusp of accelerating scientific advancement. Society has ambitious expectations that the next cure for cancer, breakthrough in Alzheimer’s, and next generation of treatments for mental health, pain, and flu are right around the corner.
At FasterCures, we believe that the future of our health rests on a new kind of social contract – a Health Citizenship – in which there is an implied set of rights and responsibilities for both the individual and the system. The goal of this social contract is to build a world that recognizes three fundamental truths:
• The path to better health and the advancement of science begin and end with engaged patients.
• The biomedical research enterprise lives all around us – in clinical trials, the data in our wearables, electronic health records, and data used for payment.
• The stakeholders that fuel advancement – clinicians, academia, government, the private sector, and investors – must create a system focused on speeding medical research and ensuring that patients have appropriate access to treatments.
Health Citizenship acknowledges that it will take every aspect of our society – not just the formal health-care system – to harness the potential of science to find the next solution to prevent, treat, or cure. Our future clinical leaders hold the key to that nirvana, but their success depends on our bending the arc of progress upward in three areas:
1) Recruiting and engaging a new citizenry
The backbone of developing new approaches to prevent and treat disease is clinical trials. A report by the Institute of Medicine estimates that between 20 and 40 percent of adult cancer patients are eligible for a cancer clinical trial. But, adult participation in clinical trials remains under 3 percent despite numerous efforts to change that. At FasterCures, we set out to better understand patients’ and caregivers’ perceptions of different stakeholders in medical research as part of the Health Data Basics project. Through a survey of patients and caregivers, we found patients most trusted physicians with their data, underscoring the role that physicians play in helping patients understand the importance of participation in clinical trials, which ultimately contributes significantly to medical research.
Despite these data, we have a long way to go for our clinical leaders to embrace this responsibility: Only 22 percent of Americans have ever been informed by their doctors of medical research studies in which they may be qualified to participate. However, a 2017 survey by the Center for Information & Study on Clinical Research Participation showed 90 percent of patients want to hear about clinical research during visits with their primary physician and, most importantly, 72 percent say they would likely participate if recommended by their physician.
2) Understanding where rights and responsibilities exist
Building an engaged citizenry is impossible without more transparency around the opportunities that physicians and patients have in research participation. Although great strides have been made by the government to increase registration of clinical trials on clinicaltrials.gov, we have a way to go for these resources to be a useful tool during the precious interactions that take place between a patient and physician. However, enterprising nonprofits are taking strides to harness the power of clinical trials.
Seeking to break down the complex barriers that have too often kept patients from engaging in medical research, Antidote hopes that its searchable database creates greater engagement and, as a result, expedited medical advancement. Organizations such as the Melanoma Research Alliance are using Antidote to assist patient communities with finding available clinical trials in their area.
The National Brain Tumor Society created a user-friendly clinical trial finder to help patients, physicians, and their caregivers after finding that close to half of brain tumor patients were never counseled on enrolling in a clinical trial. This accomplishment is much more than a data victory; NBTS was able to design a resource that took into account the chaos of a new diagnosis and the urgency that physicians and families face in understanding where and for which trials they may be eligible.
3) Enabling the freedom of our clinical leaders
Even if we can fully engage our clinical leaders, they face numerous challenges, including the intensity of paperwork and lack of incentives. In another Institute of Medicine report, physicians stated they would enroll more patients if there were stronger financial incentives to help offset administrative burdens.5 Through increasing clinical trial enrollment and supporting a more efficient and effective biomedical research environment, we may be able to leverage the momentum of public and private sectors to realign payments to physicians, hospitals, and health plans to incentivize higher quality and more efficient care.
For example, the Medicare program can play an important role in advancing Health Citizenship and supporting physicians and patients. Through its payments to physicians, discussing clinical trials with patients can be paid separately or be recognized as part of physician quality improvement programs. In addition, introducing Medicare beneficiaries to their role in supporting medical research can be an aspect of the beneficiary’s initial Welcome to Medicare visit and annual wellness visit.
It will take both public payers, like Medicare, as well as health plans and employers, to address the challenges that physicians and patients face when it comes to clinical research. But through that collaboration, we can support a trial-rich environment filled with meaningful and easy ways to engage.
So, to all our future clinical leaders, please remember that Match Day is not a moment, you’re joining a movement: #HealthCitizenship.
Tanisha Carino, a senior executive with decades of experience in academia, government, and the private sector, is the executive director of FasterCures, a center of the Milken Institute devoted to saving lives and improving the medical research system.
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