Spotlight on Engagement: Steven Joffe and Rachel Grob

Learning Healthcare Systems

Principal Investigator: Steven Joffe, MD, MPH; Department of Medical Ethics and Health Policy, University of Pennsylvania

Co-Investigator: Rachel Grob, M.A., PhD; Center for Patient Partnerships and Department of Family Medicine and Community Health, UW-Madison

What is the focus of your research?

We are studying Learning Health Systems – that is, what health systems do to learn how to improve care and outcomes, both for patients in the system and for people outside the system. We are particularly interested in the role patients and families play in these processes, and what kinds of systematic approaches to governance support good learning.  We plan to highlight best practices we discover through this study so that health systems across the country can more easily improve their own learning.

How has stakeholder engagement helped your project so far?

One strength of our PCORI design is that we intentionally planned to come to CARDS twice – first to get early input, and later to get feedback on more developed instruments we will use in focus groups with communities across the country. Because we went to the first CARDS  meeting so early in our process, they had quite an impact on the way we’ve thought about our study right from the very beginning.  Because we had a chance to absorb their perspectives, it feels like we have them sitting in the room with us as we shape every aspect of our approach.

More specifically, meeting with the CARDS group helped us understand what kind of terminology to use when talking with patients, families, and community people about our work. The meeting gave us insight about the priorities, concerns and ideas of lay people, including people who have experienced poverty and who have had specific challenges connecting with health care. Having this frame has helped both our research team and stakeholder advisory board (which itself includes patients/families).

What is a lesson you’ve learned from your stakeholder engagement work?

Consult diverse stakeholders early and often!

Services provided by WINRS to the research team:

  • Two CARDS meetings: one to review ideas about the study before creating the materials and another to review specific materials for interviewing patients and families