Early assessment of the 10-step patient engagement framework for patient-centred outcomes research studies: The first three steps

Abstract

Background. A key principle of patient-centred outcomes research (PCOR) is the engagement of patients and other stakeholders in the research process, but the evidence is still emerging on the impact patient engagement has on the research process. A 10-step framework has been developed to provide methodological guidance for patient engagement throughout the research process. However, the utility of the framework for patient engagement has not been tested in actual research studies. Objective. To describe researcher's overall experiences with engaging patients at the beginning of their PCOR research process. Methods. Twelve in-depth interviews were conducted face-to-face and by telephone with PCOR researchers between November 2014 and January 2015 at an Academic Health Center in the eastern USA. All data were audiotaped and transcribed, and NVivo 10 software was used for data analysis. Results. Four major themes emerged (i) the importance of patient engagement and how it provides 'a perspective you can't get unless you talk to the patient'; (ii) the impact of patient engagement; (iii) challenges and barriers of engagement; and (iv) the realities of patient engagement. Conclusions. Researchers' views illustrate the need to re-evaluate patient engagement in PCOR based on current realities. Given the many challenges to engagement that researchers encounter, it may be more productive to redefine the process of patient engagement so that the issues researchers now face are taken into account in future funding announcements, engagement rubrics and methodology frameworks developed.