In 2013, Geisinger Health System convened its clinical, research, and administrative leadership to conduct a mid-course evaluation of our 10-year strategic plan for research. Our aim: to assess the internal and external research environment and determine whether our plan needed modification. The review yielded several modifications, including a decision to embrace patient engagement as fundamental to the research process.
This assessment was particularly pertinent because we had just received our first research contract from PCORI and so were especially attuned to the role of patients in research. The strategic plan had been developed before PCORI existed, so in our 2013 review, there was keen interest in PCORI’s role as a funder. We recognized that the close relationship that Geisinger, as an integrated healthcare delivery system, has with its patients offers opportunities for us to differentiate ourselves from more traditional research organizations.
As part of the reexamination of our strategic plan, we formed a working group to explore patient engagement in research and to answer the question of how we could best take advantage of the opportunities that working with PCORI offered us. The working group’s recommendations were adopted by the leadership and included in the revised strategic plan.
A key step in the group’s deliberations was to develop a shared understanding of what patient engagement in research means—an understanding informed in part by PCORI leaders. Two key concepts from PCORI were central to the working group and later appeared in our final report:
- Patient engagement in research is the interactive, bidirectional exchange between patients and investigators (as well as other stakeholders) in the research process in order to focus on the health questions and outcomes that are most important to patients and to improve the quality and relevancy of research (PCORI Expert Interviews Projects).
- Patient-centered outcomes research starts from the vantage point of individuals facing health decisions. Every step of the design, conduct, analysis, and dissemination of patient-centered outcomes research should be directed to informing health decisions that affect outcomes that are meaningful to a specific group of patients. From the earliest phases of defining a research topic and formulating a study question; then identifying a study population and choosing interventions, comparators, and outcomes to measure; through the conduct of a study and analysis of results; and ultimately to the dissemination of research findings into clinical practice, researchers should ensure that patient-centered outcome research results accurately and effectively inform health decisions important to patients. This requires patient engagement throughout the research process (PCORI Draft Methodology Report).
Patient Engagement in the Clinical Arena
Geisinger is working to transform the care delivery process by actively engaging our patients through the increasing use of patient-reported data and the "Open Notes" project. Open Notes provides patient access to all clinical notes, as well as radiology and laboratory reports, in much more detail than is usually available with a patient portal. Pilot studies have demonstrated increased patient engagement and adherence to care plans, with attendant high satisfaction from both patients and providers.
More recently, we launched a patient-experience initiative to drive further improvements not just in patient satisfaction but also in shared decision making and other dimensions of patient- and family-centered care. In addition, patients are engaged in care-quality improvement and safety initiatives. The spectrum of these activities is reflected in the conceptual framework presented in the top two rows of the figure below. In both care and care improvement, we have been moving toward full engagement.
Adding the Research Dimension
The working group on patient engagement in research reviewed the engagement framework and realized that a discovery dimension could be added. (Discovery refers to the whole spectrum of activities that seek to generate new knowledge, from quality improvement to human subjects research.) The expanded framework was then used to assess existing patient engagement initiatives in both research and patient care and to develop a vision for our immediate and longer-term direction.
A gap analysis provided the foundation for the working group’s subsequent recommendations. In the research arena, the group determined that most of the current patient-engagement efforts focus on informing patients about discovery activities. However, although there have been and are currently examples that fall further along the engagement continuum—for example, a research program in pediatric obesity employs a patient advisory board and a patient is serving as a co-investigator on the PCORI-funded genomic report project.
After deliberation, the working group on patient engagement recommended:
- Geisinger’s leadership should embrace engagement as fundamental to all forms of discovery, from quality improvement and comparative effectiveness research to health services research and clinical trials. Especially in those areas designated as centers of excellence, the default assumption should be that patient engagement is necessary.
- As a tool for education, communication, and planning, Geisinger should adopt the engagement framework (see figure) for patient and family engagement in discovery, as well as care.
- A standing advisory group on patient and family engagement should be established with the goal of promoting engagement as an essential facet of discovery at Geisinger. The group would serve as a resource for investigators and also advance patient and family engagement as an organizational priority.
The research strategic planning group, and subsequently Geisinger executive leadership, endorsed these recommendations, as well as a standing advisory group on patient engagement that will soon have its first meeting. Geisinger is excited about embarking upon this cultural transformation.
Although such change is daunting, we recognize that in the ever-changing landscape of contemporary health care, engaging patients in research is more than a fad. Patients are the sole source of information and perspectives that are “mission critical” for healthcare organizations and systems as they become increasingly accountable, not just for integrating and managing the care of sick patients, but also for improving health-related outcomes of populations.
We at Geisinger are committed to patient engagement as part of our institutional pledge to “Transform the Future,” and in recognition of our founder’s imperative issued 100 years ago to “Make my hospital the best.” This imperative requires not only discovery but also patient engagement in that process. We’re pleased to have incorporated PCORI’s outlook in these efforts and look forward to exploring future opportunities with PCORI and others who share our commitment to patient engagement in everything we do.
