One of PCORI’s goals is to improve the methods that researchers use for patient-centered outcomes research. PCORI funds methods projects like this one to better understand and advance the use of research methods that improve the strength and quality of comparative effectiveness research.
This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.
What is the research about?
Healthcare systems are groups of two or more organizations, such as hospitals and primary care clinics, that provide complementary healthcare services. Some healthcare systems, called learning healthcare systems, use data, quality improvement projects, and research to improve the quality, safety, and value of the health care they provide. These tasks are known as learning activities.
In this study, the research team wants to find effective ways for healthcare systems to oversee their learning activities and make sure those activities address patients’ needs. To meet this goal, the team is studying healthcare systems that are known for learning. The team is asking how
- Healthcare systems define, identify, and group learning activities
- Healthcare systems oversee learning activities
- Patients and families help healthcare systems oversee learning activities
Who can this research help?
Findings from this study may help healthcare systems, patients, and families work together to oversee learning activities.
What is the research team doing?
This study has two phases. In phase 1, the research team is interviewing people from 16 different healthcare systems, including
- Chief executive officers
- Hospital executives in charge of improving care quality
- Chief medical officers
- Chief information officers
- Chief nursing officers
- Chief patient experience officers, who work on improving care from patients’ and families’ points of view
- Chairs of patient and family advisory councils, which are groups of patients, family members, and healthcare professionals working together to improve the quality and safety of health care
- Directors of institutional review boards, which are committees that protect people taking part in research studies
- Directors of research institutes
The team is asking these people about
- What types of learning activities the healthcare system is doing
- How patients and family members help oversee these activities
- Any challenges they have had working with patients and family members
- Possible solutions to these challenges
In phase 2, the research team is holding eight focus groups with patients and family members who get care within 4 of the 16 healthcare systems. The team is asking participants about
- What they think of the idea of a learning healthcare system
- What helps them trust the healthcare system where they receive care
- How they think patients and family members should help oversee learning activities
- What they think about the findings from the phase 1 interviews
Patients, family members, and community advisors from a local university give input to the research team on study design and conduct.
Research methods at a glance
|Goal||Identify the types, strengths, and weaknesses of patient and family member engagement in governance structures and processes|
- Gwen Darien, Executive Vice President, Patient Advocacy, National Patient Advocate Foundation
- Erin Moore, Healthcare Innovation Consultant, Cincinnati Children's Hospital Medical Center
- Mary Anne Peugeot, Patient and Family Advocate
- Mary "Dicey" Jackson Scroggins, Pinkie Hugs, LCC
- In My Sister's Care
- Denise Smith, BHCA, CHW, PN, Health Services Consultant
- Paul McLean
Other Stakeholder Partners
- Thomas Gallagher, MD, Professor and Associate Chair, Department of Medicine and Professor, Department of Bioethics and Humanities, University of Washington
- Ingrid M. Nembhard, PhD, Associate Professor, Yale School of Management and Yale School of Public Health
- Bradley A. Malin, PhD, Associate Professor, Department of Biomedical Informatics, Vanderbilt University
- James E. Sabin, MD, Director, Ethics Program, Harvard Pilgrim Health Care
- Deborah Roseman, MPH
- Community Advisors on Research Design and Strategies (CARDS)®, Wisconsin Network for Research Support, School of Nursing, University of Wisconsin-Madison
- Association of American Medical Colleges (AAMC)