Kirsten Ostherr, professor of English and director of medical humanities at Rice, joined an innovation-minded mix of 40 health care stakeholders, experts and high-level government officials at the White House June 2 for a special workshop on engaging patients as participants in medical research.
“Medical research can be very lab-centered and focused on processes of discovery that are intended to help people but that don’t necessarily have patients at the core from the beginning,” said Ostherr, who is especially interested in using new media technologies to enhance patient-centered care. “For instance, there aren’t patients involved in helping design research studies; there aren’t patients involved in analyzing results of research studies. The bottom line for President (Barack) Obama is that we need to really embrace both healthy people and patients to essentially donate their data and participate in lots of other ways to make precision medicine a reality that benefits everyone.”
The workshop was co-hosted by the White House’s Office of Science and Technology Policy and Stanford Medicine X, a Stanford University-based conference and year-round initiative that aims to be a catalyst for new ideas about the future of medicine and health care. Ostherr has been involved with the initiative for several years and serves in a leading role on its education committee.
The workshop topic is a core principle of Obama’s Precision Medicine Initiative (PMI), which he announced in his 2015 State of the Union address. The program’s mission is to enable a new era of medicine through research, technology and policies that empower patients, researchers and providers to work together toward development of individualized treatments. Rice Provost Marie Lynn Miranda serves on an advisory panel for the PMI Cohort Program.
According to the National Institutes of Health, most medical treatments have been designed for the average patient, but the one-size-fits-all approach may not be successful for all patients. The field of precision medicine is expected to enable health care providers to tailor treatment and prevention strategies to people’s unique characteristics, including their genome sequence, the chemicals in their body, the composition of microorganisms in their body, health history, lifestyle and diet.
The workshop addressed a variety of questions, most notably how to have patients help shape research priorities and how to streamline the research process and make participation in clinical trials a more rewarding experience for participants. The attendees also discussed ways to better return research results to participants and involve patients in reviewing, publishing and disseminating the results. Ostherr said the British Medical Journal recognizes this as a problem and has already begun including patient advocates as reviewers of article submissions to the journal.
Ostherr, who specializes in health and medical visualizations, has overseen a range of digital medical humanities projects led by Rice students she teaches. For example, working with physicians at the University of Texas MD Anderson Cancer Center, Ostherr’s students used digital innovation and technology to enhance enrollment in complicated yet critical cancer clinical trials to accelerate discovery.
“We all have a role to play in ensuring that the data that is increasingly available outside of scientific settings can actually produce something that benefits health for all,” Ostherr said in discussing her key takeaways from the workshop. “That perspective is one that requires that people beyond the scientific community be at the table. Because of that, a humanist like me, who’s done a lot of research on how doctors and patients use technology to understand health and disease, that’s a natural fit for this kind of setting, where what you’re really talking about is the human dimensions of medicine.”
Ostherr said she was inspired by visiting the White House. “Being in a place where there was that level of dialogue going on, where matters of national and international importance were being discussed … the very fact that we were meeting in that space felt like an incredible acknowledgment of the importance of what we’re doing,” she said. “Hearing that the president of the United States feels that human-centered care is the most important thing for the Precision Medicine Initiative to succeed. It not only felt very validating, but it also kind of reminded me of the larger goal of the work that we’re all engaged in: The idea that the research I’m doing and the work I’m doing with my students can help on a national level achieve really big goals is inspiring.”