TY  - JOUR
AU  - Aguayo, Gloria A
AU  - Goetzinger, Catherine
AU  - Scibilia, Renza
AU  - Fischer, Aurélie
AU  - Seuring, Till
AU  - Tran, Viet-Thi
AU  - Ravaud, Philippe
AU  - Bereczky, Tamás
AU  - Huiart, Laetitia
AU  - Fagherazzi, Guy
PY  - 2021
DA  - 2021/12/23
TI  - Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: Review, Patient Viewpoint, and Guidelines for Implementation of a Digital Cohort Study
JO  - J Med Internet Res
SP  - e25743
VL  - 23
IS  - 12
KW  - patient and public involvement
KW  - workshops
KW  - surveys
KW  - focus groups
KW  - co-design
KW  - digital cohort study
KW  - digital epidemiology
KW  - social media
KW  - mobile phone
AB  - Background: Patient and public involvement (PPI) in research aims to increase the quality and relevance of research by incorporating the perspective of those ultimately affected by the research. Despite these potential benefits, PPI is rarely included in epidemiology protocols. Objective: The aim of this study is to provide an overview of methods used for PPI and offer practical recommendations for its efficient implementation in epidemiological research. Methods: We conducted a review on PPI methods. We mirrored it with a patient advocate’s viewpoint about PPI. We then identified key steps to optimize PPI in epidemiological research based on our review and the viewpoint of the patient advocate, taking into account the identification of barriers to, and facilitators of, PPI. From these, we provided practical recommendations to launch a patient-centered cohort study. We used the implementation of a new digital cohort study as an exemplary use case. Results: We analyzed data from 97 studies, of which 58 (60%) were performed in the United Kingdom. The most common methods were workshops (47/97, 48%); surveys (33/97, 34%); meetings, events, or conferences (28/97, 29%); focus groups (25/97, 26%); interviews (23/97, 24%); consensus techniques (8/97, 8%); James Lind Alliance consensus technique (7/97, 7%); social media analysis (6/97, 6%); and experience-based co-design (3/97, 3%). The viewpoint of a patient advocate showed a strong interest in participating in research. The most usual PPI modalities were research ideas (60/97, 62%), co-design (42/97, 43%), defining priorities (31/97, 32%), and participation in data analysis (25/97, 26%). We identified 9 general recommendations and 32 key PPI-related steps that can serve as guidelines to increase the relevance of epidemiological studies. Conclusions: PPI is a project within a project that contributes to improving knowledge and increasing the relevance of research. PPI methods are mainly used for idea generation. On the basis of our review and case study, we recommend that PPI be included at an early stage and throughout the research cycle and that methods be combined for generation of new ideas. For e-cohorts, the use of digital tools is essential to scale up PPI. We encourage investigators to rely on our practical recommendations to extend PPI in future epidemiological studies. 
SN  - 1438-8871
UR  - https://www.jmir.org/2021/12/e25743
UR  - https://doi.org/10.2196/25743
UR  - http://www.ncbi.nlm.nih.gov/pubmed/34941554
DO  - 10.2196/25743
ID  - info:doi/10.2196/25743
ER  -