Patient engagement in research, brain science, and collaboration are priorities for leaders in government, academia, patient advocacy, scientific societies, and industry as they discuss efforts to accelerate innovation. Experts convened for panel discussions on these and other topics at Research!America’s 2018 National Health Research Forum at the Newseum in Washington, D.C. on September 6, 2018.
In the first panel, moderated by Mark McClellan, Director of the Robert J. Margolis Center for Health Policy at Duke University, panelists were asked about the most promising trends or new innovations for reimagining medical progress. “Our patients are asking for something more,” declared Dr. Ivor Benjamin, president of the American Heart Association. “We are recognizing that we need to be thinking about different new models,” he said, mentioning the importance of intervening in cardiovascular disease at the earliest onset.
Gopal Khanna, director of the Agency for Healthcare Research and Quality, and Tim Hoctor, vice president of Life Science Services as Elsevier, both mentioned the promise of data collection. “Think of the new world we live in,” said Khanna. “The volume, the variety, and the velocity of data that’s coming in…it changes the paradigm as to how research would be done in the future.” Hoctor agreed: “The promise of using data to predict an outcome is more and more likely, and not only that, but it’s changing fundamentally what pharmaceutical research looks like.”
“The other thing I’m more attuned to,” Hoctor continued, “is the willingness to collaborate. The willingness to collaborate breaks down barriers between companies doing fundamental research in the same area.”
Greg Simon, president of the Biden Cancer Institute, shared his passion for data sharing. “Patients want to share their data, it’s true,” he said. “The disruption that’s going to happen is not going to happen from the bottom up; it’s not going to happen at Hopkins or Sloan Kettering. It’s going to happen from the bottom up. Patients should be able to require that their doctor and their hospital and research center share their data. It shouldn’t be a request. It should be a mandate.”
Luis Miguel Camargo, UCB, Inc’s director of innovation networks, also emphasized collaboration. “Because we’re a mid-level pharma, we can’t do everything ourselves,” he noted. “We find a lot of opportunities to say, this academic lab brings this to the table, and then we can bring our platforms from the table and from there, we can create more value that doesn’t otherwise exist.”
In the second panel, moderator and health care communications consultant Jackie Judd asked about challenges presented by unmet medical needs, particularly the opioid crisis and at the other end of the spectrum, rare diseases that are sometimes neglected by research. Centers for Disease Control and Prevention Director Dr. Robert Redfield spoke about the agency’s efforts to address the opioid crisis, noting that “success for us is to educate doctors and nurses about prescription practices and alternatives for management of acute pain.”
Dr. Celia Witten, director of the Office of Cellular, Tissue, and Gene Therapy at the Center for Biological Evaluation and Research at the Food and Drug Administration discussed unmet needs in the area of renal care. “There are many steps that have to be done along the way,” she said, and “it’s not something a company is going to achieve on its own….It really needs a community.”
Dr. Srini Ramanathan, vice president of developmental sciences at Horizon Pharma, also used the example of renal disease as he talked about the importance of collaboration. “Horizon partnered with the north American pediatric renal trials to essentially develop the first longitudinal cystinosis natural history of our patient registry,” he said. “This registry is really owned by the medical community.”
In discussing prevention and behavioral health interventions, Dr. Guillermo Prado, Dean, Graduate School, University of Miami, said partnerships are very important when working on primary prevention to get interventions into communities where they can leave an impact. “It’s important to get the buy-in from a lot of different stakeholders,” he added. “It’s important to have the champions of the community, otherwise we’re not going to be able to implement successfully.”
Mikael Dolsten, president of worldwide research and development at Pfizer, spoke about the company’s efforts in anti-microbial resistance and new treatments for back pain, emphasizing “we wouldn’t have been able to do it ourselves. We have to break down those silos.”
In the third panel of the day, Erin Durkin, health care and congressional correspondent, National Journal, led a discussion on brain science. Dr. Francis Collins, director of the National Institutes of Health (NIH), highlighted advances underway as part of NIH’s Brain Research through Advancing Innovative Neurotechnologies® (BRAIN) Initiative. “This is a very bold effort to understand how those 86 billion neurons between your ears do what they do,” Collins said. “Considering that each of those may have a thousand connections, the scale of magnitude of trying to understand the functions of this most complicated structure in the known universe is pretty daunting.” Dr. France Cordova, director of the National Science Foundation (NSF) described some of the agency’s promising new efforts in brain science including Next Generation Networks For Neuroscience (NeuroNex) and CLARITY, a new process for 3D brain imaging. “The brain is capable of thinking and learning and action and pain and suffering,” she said. “So we’re very lucky to be bringing all these people together and working together in partnership.”
In a fireside chat with Susan Dentzer, president and CEO of the Network for Excellence in Health Innovation, Alex Azar II, Secretary, Department of Health and Human Services discussed strategies for addressing the opioid epidemic including building the evidence on opioid alternatives for pain management, and efforts to reduce drug costs such as creating more competition with generics and a pathway for biosimilars. He also stressed patient engagement, a cornerstone of the NIH “All of Us” initiative, which seeks to gather data from one million people living in the U.S. to accelerate research and improve health. “It’s really going to be one of the most historic legacies of this decade. Just think about the impact of the Framingham study – and this puts that to shame.” Secretary Azar also announced new efforts to accelerate patient recruitment. “You heard it here first: we’ll be giving out $20 million in grants to 40 community health care centers that are assisting in enrolling patients to make sure we’re getting a fully representative patient group into the All of Us study,” he said.
The forum kicked off with a networking breakfast featuring National Journal Politics Editor Josh Kraushaar. Kraushaar provided some insight regarding key races in the midterm elections and the state of political polarization. “Culture, race, identity, social issues, values issues, are the driving forces in our politics, more than ever before,” he said. “They mean a whole lot more than the state of the economy or the issues of self-interest that have long defined presidential and midterm elections.”