Following two years of discussions with more than 120 health care stakeholders comprised predominantly of patients, caregivers and representatives from patient advocacy organizations, the Personalized Medicine Coalition is pleased to release a new patient-centered research agenda for personalized medicine that defines 45 research questions for the field across nine areas of special concern for patients themselves. By aligning the focus of future research in the field with questions defined by patients and their representatives, the report, titled Moving Beyond Population Averages: A Patient-Centered Research Agenda Advancing Personalized Medicine, may guide health systems toward a new era of patient-centered personalized medicine.
Reflecting on their encounters with the health care system and their perspectives on personalized medicine, the participants in the project focused largely on their desire for research that could improve the quality and quantity of interactions between patients and providers of health care services, with an emphasis on the importance of education and access. Their research questions were designed to address concerns specifically related to:
- Patient-provider communication;
- Patient education;
- Caregiver, pediatric and family considerations;
- Provider education, resources and collaboration;
- Access, affordability and utilization;
- Coverage and reimbursement;
- Clinical trials;
- New technologies and data management; and
- Outcomes research.
“Studying the questions outlined in this research agenda will bring us one step closer to an era of personalized medicine by revealing how health care decision-makers can work even more closely with patients to develop prevention and treatment strategies that are tailored to patients’ biological characteristics, preferences, values and circumstances,” said Edward Abrahams, President, Personalized Medicine Coalition.
The report was funded through a Patient Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (10438-PMC). Participants in the project represented diverse backgrounds, disease areas and health needs, and had varying levels of experience with personalized medicine. Participants from outside the patient community included health care professionals, researchers and others with an interest in advancing the field.
Additional quotes about the research agenda from project participants representing the GO2 Foundation for Lung Cancer, the National Alliance Against Disparities in Patient Health and the Alzheimer’s Foundation of America are presented below.
“This research agenda will go a long way toward putting patients with lung cancers and other devastating diseases at the center of efforts to advance personalized medicine — which is exactly where they belong. Who better than the person who actually has the disease to be part of the research that will help address it?”
– Bonnie J. Addario, Board Chair, Co-Founder, GO2 Foundation for Lung Cancer; Board Member, Personalized Medicine Coalition
“Through its inclusion of patients from marginalized and vulnerable populations and the stakeholders that support them, this research agenda is well-equipped to help us better understand and reduce health disparities and deliver the promise of better health care inherent in the principles of personalized medicine.”
– Alex J. Carlisle, Ph.D., Founder, Chairman, & CEO, National Alliance Against Disparities in Patient Health
“The research agenda will play an important role in advancing an era of patient-centered health care by aligning future research in personalized medicine with the perspectives of the patients who will be most affected by new developments in this rapidly evolving field.”
– Lori Frank, Ph.D., Memory Screening Advisory Board Member, Alzheimer’s Foundation of America; Senior Behavioral Scientist, RAND Corporation; Board Member, Personalized Medicine Coalition