From Individuals to Systems and Contributions to Creations: Novel Framework for Mapping the Efforts of Individuals by Convening The Center of Health and Health Care

J Particip Med. 2022 Nov 3;14(1):e39339. doi: 10.2196/39339.


Background: People with lived health care experiences (often referred to as "patients") are increasingly contributing to health care and are most effective when they are involved as partners who can contribute complementary knowledge alongside other stakeholders in health care.

Objective: Convening The Center aimed to bring together "people known as patients"-the center of health care-to address priorities as they defined them.

Methods: According to the original project design, an in-person gathering was to be conducted; however, as a result of the COVID-19 pandemic, the in-person gathering was transformed into a series of digital gatherings, including an in-depth interview phase, small-group gatherings, and a collective convening of 25 participants (22 women and 3 men from the United States, India, Costa Rica, Sweden, and Pakistan). Each participant was interviewed on Zoom (Zoom Video Communications Inc), and the interview data were thematically analyzed to design a subsequent small group and then full cohort Zoom sessions. Visual note-taking was used to reinforce a shared understanding of each individual- and group-level conversation.

Results: The interviews and gatherings for Convening The Center offered unique perspectives on patient activities in research, health innovation, and problem-solving. This project further developed a novel, two-spectrum framework for assessing different experiences that patients may have or seek to gain, based on what patients actually do, and different levels of patients' involvement, ranging from individual to community to systemic involvement.

Conclusions: The descriptors of patients in academic literature typically focus on what health care providers think patients "are" rather than on what patients "do." The primary result of this project is a framework for mapping what patients "do" and "where" they do their work along two spectra: from creating their own projects to contributing to work initiated by others and from working at levels ranging from individual to community to systems. A better understanding of these spectra may enable researchers to more effectively engage and leverage patient expertise in health care research and innovation.

Keywords: access to care; co-design; participatory design; patient and public involvement; patient involvement; patient role; patient-centered care; patient-centered outcomes.