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Currently submitted to: Journal of Medical Internet Research

Date Submitted: Nov 13, 2020
Open Peer Review Period: Nov 13, 2020 - Jan 8, 2021
(currently open for review)

Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.

Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: a Review, a Patient Viewpoint and Guidelines for Implementation of a Digital Cohort Study

  • Gloria A Aguayo; 
  • Catherine Goetzinger; 
  • Renza Scibilia; 
  • Aurélie Fischer; 
  • Till Seuring; 
  • Viet-Thi Tran; 
  • Philippe Ravaud; 
  • Tamás Bereczky; 
  • Laetitia Huiart; 
  • Guy Fagherazzi

ABSTRACT

Background:

Patient and public involvement in research (PPI) aims to increase the quality and relevance of research by incorporating the perspective from those ultimately affected by the research. Despite these potential benefits, PPI is rarely included in epidemiology protocols.

Objective:

to provide an overview of methods used for PPI and offer practical recommendations for the 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 and facilitation 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 98 studies, with 59% of studies performed in the United Kingdom. The most common methods were workshops (48.5%), meetings, events or conferences (35.1%), surveys (34.0%), focus groups (26.0%), interviews (23.7%), consensus techniques (8.2%), experience-based co-design (8.2%), James Lind Alliance (7.2%), and social media analysis (6.2%). The viewpoint of a patient showed a strong interest in participating in research. Research ideas (61.2%), co-design (42.9%), defining priorities (30.6%), participation in data analysis (26.5%) and being member of the steering committee (16.5%) were the most usual PPI modalities. We identified 8 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 ideas generation. Based on our review and case study, we recommend to include PPI at an early stage and through all the research cycles and to combine methods for generation of new ideas. For e-cohorts, the use of digital tools are essential to scale up PPI. We encourage investigators to rely on our practical recommendations to extend PPI in future epidemiological studies.


 Citation

Please cite as:

Aguayo GA, Goetzinger C, Scibilia R, Fischer A, Seuring T, Tran V, Ravaud P, Bereczky T, Huiart L, Fagherazzi G

Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: a Review, a Patient Viewpoint and Guidelines for Implementation of a Digital Cohort Study

JMIR Preprints. 13/11/2020:25743

DOI: 10.2196/preprints.25743

URL: https://preprints.jmir.org/preprint/25743

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