Engaging with communities, engaging with patients: amendment to the NAPCRG 1998 Policy Statement on Responsible Research With Communities.

Background: In 1998, the North American Primary Care Research Group (NAPCRG) adopted a groundbreaking Policy Statement endorsing responsible participatory research (PR) with communities. Since that time, PR gained prominence in primary care research. Objectives: To reconsider the original 1998 Policy Statement in light of increased uptake of PR, and suggest future directions and applications for PR in primary care. This work contributed to an updated Policy Statement endorsed by NAPCRG in 2015. Methods: 32 university and 30 community NAPCRG-affiliated research partners, convened a workshop to document lessons learned about implementing processes and principles of PR. This document emerged from that session and reflection and discussion regarding the original Policy Statement, the emerging PR literature, and our own experiences. Results: The foundational principles articulated in the 1998 Policy Statement remain relevant to the current PR environment. Lessons learned since its publication include that the maturation of partnerships is facilitated by participatory processes that support increased community responsibility for research projects, and benefits generated through PR extend beyond research outcomes. Future directions that will move forward the field of PR in primary care include: (i) improve assessment of PR processes to better delineate the links between how PR teams work together and diverse PR outcomes, (ii) increase the number of models incorporating PR into translational research from project inception to dissemination, and (iii) increase application of PR approaches that support patient engagement in clinical settings to patient-provider relationship and practice change research. Conclusion: PR has markedly altered the manner in which primary care research is undertaken in partnership with communities and its principles and philosophies continue to offer means to assure that research results and processes improve the health of all communities.

A participatory approach to understanding and measuring patient satisfaction in a primary care teaching setting.

BACKGROUND: Patient satisfaction is a complex, multidimensional concept that is difficult to measure. However, there is agreement that understanding the expectations of a patient community or "what is important to them" is an essential consideration. We chose a participatory approach to address patient satisfaction in the context of a primary care teaching clinic. OBJECTIVES: The objectives of this project were to use a participatory research team of patients staff and researchers to (1) adapt an existing patient satisfaction questionnaire (PSQ) to the specific cultural and organizational elements ofa primary care teaching clinic, (2) administer the revised questionnaire and use the findings as a tool for organizational improvement, with the ultimate goal of increasing patient satisfaction, and (3) ensure that all decision making involved patients and staff to empower them in the process of organizational change. METHODS: We used an iterative, mixed methods approach to conduct this project. An interdisciplinary committee composed of members of the patient community, clinical and administrative staff, and researchers worked together as the primary decision making body. RESULTS: We modified a preexisting questionnaire to address the unique care delivery model of the clinic, issues of cultural sensitivity, and the need for simplified language and response format. Patient dissatisfaction was found to center on continuity and access to care. CONCLUSIONS: The participatory approach was critical to our success in understanding and measuring patient satisfaction from the patients' perspective. The involvement of the interdisciplinary committee and the high level of joint decision making in this project represents a unique contribution to assessing primary care patient satisfaction.