TY - JOUR
T1 - From Individuals to Systems and Contributions to Creations
T2 - Novel Framework for Mapping the Efforts of Individuals by Convening The Center of Health and Health Care
AU - Lewis, Dana
AU - Salmi, Liz
AU - Staley, Alicia
AU - Harlow, John
N1 - Funding Information:
The Convening The Center (CTC) team expresses great appreciation for each of the 25 participants from CTC team for their work and efforts, their willingness and interest in engaging in CTC, and their input to this paper and other output materials from the project. The CTC team also greatly appreciates Rebeka Ryvola’s artistry and contributions throughout the project. The CTC team also recognizes the contributions from Paul Tarini’s thoughtful reflections throughout the project. The CTC project was funded by the Robert Wood Johnson Foundation (grant number 76851). Robert Wood Johnson Foundation played no role in the creation of this manuscript.
Funding Information:
All authors have completed the International Committee of Medical Journal Editors uniform disclosure [35] and declare the following: all authors received financial support from the Robert Wood Johnson Foundation for the submitted work; LS reports grant funding from the Gordon and Betty Moore Foundation, Cambia Health Foundation, The John A Hartford Foundation, Agency for Healthcare Quality and Research, and the National Cancer Institute within the previous 3 years; and no other relationships or activities that could appear to have influenced the submitted work.
Publisher Copyright:
© Dana Lewis, Liz Salmi, Alicia Staley, John Harlow.
PY - 2022/1
Y1 - 2022/1
N2 - 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.
AB - 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.
KW - access to care
KW - co-design
KW - participatory design
KW - patient
KW - patient involvement
KW - patient role
KW - patient-centered care
KW - patient-centered outcomes
KW - public involvement
UR - http://www.scopus.com/inward/record.url?scp=85145303313&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85145303313&partnerID=8YFLogxK
U2 - 10.2196/39339
DO - 10.2196/39339
M3 - Article
AN - SCOPUS:85145303313
SN - 2152-7202
VL - 14
JO - Journal of Participatory Medicine
JF - Journal of Participatory Medicine
IS - 1
M1 - e39339
ER -