Patient and family engagement is gaining acceptance as a strategy to integrate the wisdom and experiences of patients, caregivers, and the advocacy groups that represent them into efforts to improve healthcare outcomes and quality. “If we want better healthcare, we need new strategies to ensure that patients become full partners,” says Institute of Medicine (IOM) President Harvey V. Fineberg, MD, PhD. “Today’s healthcare system often misses out on key opportunities to help patients and clinicians partner together to achieve better health.”
We couldn’t agree more.
The Patient-Centered Outcomes Research Institute (PCORI) is committed to patient engagement in both the research it funds and the way it operates. Likewise, the National Partnership for Women & Families has long advocated for patient and consumer leadership in health policy development and health system operation and governance. However, without the active involvement of stakeholders across the healthcare community, the road to making patients and their caregivers true partners in research and care will be long and arduous.
Fortunately, there is growing interest in such collaboration. One example is an IOM-sponsored workshop in which PCORI, the National Partnership, and other leading healthcare, consumer, and patient organizations explored ways to advance patient and family engagement meaningfully in the healthcare system. A short report and video summarizing the two-day workshop, “Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement,” is now available. Attendees, who also included clinicians, researchers, policy makers, and representatives of healthcare systems, discussed how partnering with patients can accelerate the health system improvements we all seek.
Such collaboration, participants agreed, should be at multiple levels, and patients and families can and must drive decisions about informed care, knowledge generation, and value improvement. The workshop also highlighted how rewarding and effective partnering with patients can be for clinicians and researchers, leading to positive outcomes on a much faster track.
A Rich Discussion
One challenge to making patients and families full partners in research and care is that “engagement” means different things to different people. Attendees at the workshop said they prefer a definition outlined in a patient engagement−themed issue of Health Affairs. That definition focuses on engagement at three levels: direct care, organizational design and governance, and policy making. Workshop participants agreed that the definition should be expanded to include patient engagement in research.
The first day’s discussion focused on the potential impact of improved patient-clinician communication. Studies indicate that patients overwhelmingly want to participate in decision making and that, when they do, they report better outcomes and greater satisfaction and often choose diagnostic and treatment courses based on available evidence.
The second day focused on the roles of patients in research and efforts to change the research paradigm to generate evidence that reliably reflects patients’ concerns and can help them make better informed choices about their care.
Attendees agreed that the path to such a shift can be accelerated by seeing every care encounter as an opportunity to generate knowledge for research purposes. They pointed to the still new but growing trend of patients partnering in the design and implementation of research to make it more meaningful and relevant by studying questions and outcomes important to them.
Workshop participants noted that many patients are willing to share their personal information for research purposes if their privacy, security concerns, and preferences are respected and if they have a role in the design of the healthcare system that would make use of such data. Indeed, improving the process of data collection on patients’ healthcare experiences—the focus of efforts like PCORI’s proposed National Patient-Centered Clinical Research Network project—could help patients and those who care for them make better informed decisions by providing timely and useful clinical evidence about what has and hasn’t worked for similar patients.
Proving the Promise
In the end, attendees agreed that:
- Improving the quality of the care experience and using limited resources wisely will require significant cultural shifts.
- Integrating patient and caregiver voices into every level of decision making—care, system design, policy making, and research—holds promise for improving the quality and effectiveness of care.
- Being an engaged patient and actively engaging patients are not intuitive skills; patients and clinicians learn these skills over time and through partnerships with supportive care teams.
- Achieving and exceeding three basic aims of health and healthcare policy—high-quality care, lower costs, and better health—calls for partnering with patients and families as leaders and drivers of care improvement. (Note: Although PCORI’s focus is on clinical comparative effectiveness research and not cost-effectiveness studies, its authorizing legislation says that, in its research priorities, it should take into account a number of factors, including “the effect on national expenditures associated with a healthcare treatment, strategy, or health conditions.”)
Although challenges remain, the IOM workshop was an important sign of the burgeoning effort to make the healthcare system more patient-centered in all that it does.
Patients are one of healthcare’s richest, yet largely untapped, resources. Patients are smart, experienced, resourceful, and determined. Helping to make them and those who care for them meaningful partners across the healthcare system can lead to more effective research, more useful evidence, and care that leads to improved outcomes.
We urge all healthcare stakeholders—researchers, clinicians, healthcare systems, employers, payers, industry, and others—to capitalize on the growing momentum of the patient engagement movement and to help us realize that promise.
Sheridan is PCORI’s Director of Patient Engagement
Bechtel is an Advisor and former Vice President at the National Partnership for Women & Families
 Carman, K.L., P. Dardess, M. Maurer, S. Sofaer, K. Adams, C. Bechtel, J. Sweeney. 2013. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Affairs 32 (2):223-231.
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