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

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Abstract

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.

Related collections

Most cited references 153

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Patient engagement in research: a systematic review

Juan Pablo Domecq, Gabriela Prutsky, Tarig Elraiyah … (2014)

Background A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? Methods We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. Results We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. Conclusions Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.

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Mapping the impact of patient and public involvement on health and social care research: a systematic review.

Jo Brett, Sophie Staniszewska, Carole Mockford … (2014)

There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research. To identify the impact of patient and public involvement on health and social care research. A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon-Woods et al. (2005) checklist. All study types that reported the impact PPI had on the health and/or social care research study. A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user-focused research objectives, development of user-relevant research questions, development of user-friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer-focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified. This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade. © 2012 John Wiley & Sons Ltd.

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Understanding factors affecting patient and public engagement and recruitment to digital health interventions: a systematic review of qualitative studies

Siobhan O’Connor, Peter Hanlon, Catherine A O'Donnell … (2016)

Background Numerous types of digital health interventions (DHIs) are available to patients and the public but many factors affect their ability to engage and enrol in them. This systematic review aims to identify and synthesise the qualitative literature on barriers and facilitators to engagement and recruitment to DHIs to inform future implementation efforts. Methods PubMed, MEDLINE, CINAHL, Embase, Scopus and the ACM Digital Library were searched for English language qualitative studies from 2000 – 2015 that discussed factors affecting engagement and enrolment in a range of DHIs (e.g. ‘telemedicine’, ‘mobile applications’, ‘personal health record’, ‘social networking’). Text mining and additional search strategies were used to identify 1,448 records. Two reviewers independently carried out paper screening, quality assessment, data extraction and analysis. Data was analysed using framework synthesis, informed by Normalization Process Theory, and Burden of Treatment Theory helped conceptualise the interpretation of results. Results Nineteen publications were included in the review. Four overarching themes that affect patient and public engagement and enrolment in DHIs emerged; 1) personal agency and motivation; 2) personal life and values; 3) the engagement and recruitment approach; and 4) the quality of the DHI. The review also summarises engagement and recruitment strategies used. A preliminary DIgital Health EnGagement MOdel (DIEGO) was developed to highlight the key processes involved. Existing knowledge gaps are identified and a number of recommendations made for future research. Study limitations include English language publications and exclusion of grey literature. Conclusion This review summarises and highlights the complexity of digital health engagement and recruitment processes and outlines issues that need to be addressed before patients and the public commit to digital health and it can be implemented effectively. More work is needed to create successful engagement strategies and better quality digital solutions that are personalised where possible and to gain clinical accreditation and endorsement when appropriate. More investment is also needed to improve computer literacy and ensure technologies are accessible and affordable for those who wish to sign up to them. Systematic review registration International Prospective Register of Systematic Reviews CRD42015029846 Electronic supplementary material The online version of this article (doi:10.1186/s12911-016-0359-3) contains supplementary material, which is available to authorized users.

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Author and article information

Contributors

Gloria A Aguayo:

ORCID: https://orcid.org/0000-0002-5625-1664

Deep Digital Phenotyping Research Unit, Department of Population HealthLuxembourg Institute of Health1 AB rue Thomas EdisonStrassen, 1445Luxembourg352 269770719352 26970770gloria.aguayo@lih.lu

Journal

Journal ID (nlm-ta): J Med Internet Res

Journal ID (iso-abbrev): J Med Internet Res

Journal ID (publisher-id): JMIR

Title: Journal of Medical Internet Research

Publisher: JMIR Publications (Toronto, Canada )

ISSN (Print): 1439-4456

ISSN (Electronic): 1438-8871

Publication date Collection: December 2021

Publication date (Electronic): 23 December 2021

Volume: 23

Issue: 12

Electronic Location Identifier: e25743

Affiliations

[1 ] Deep Digital Phenotyping Research Unit, Department of Population Health Luxembourg Institute of Health Strassen Luxembourg

[2 ] Diabetes Australia Melbourne Australia

[3 ] Diabetogenic Melbourne Australia

[4 ] Luxembourg Institute of Socio-Economic Research Esch/Alzette Luxembourg

[5 ] Centre of Research in Epidemiology and Statistic Sorbonne Paris Cité National Institute of Health and Medical Research (INSERM), French National Institute for Agricultural Research (INRA) Université de Paris Paris France

[6 ] Centre d’Epidémiologie Clinique, Hôpital Hôtel-Dieu, Assistance Publique-Hôpitaux de Paris Paris France

[7 ] European Patients’ Academy on Therapeutic Innovation Brussels Belgium

Author notes

Corresponding Author: Gloria A Aguayo gloria.aguayo@ 123456lih.lu

Author information

Gloria A Aguayo https://orcid.org/0000-0002-5625-1664

Catherine Goetzinger https://orcid.org/0000-0002-6377-1078

Renza Scibilia https://orcid.org/0000-0003-1779-5316

Aurélie Fischer https://orcid.org/0000-0002-2822-2874

Till Seuring https://orcid.org/0000-0001-8090-3514

Viet-Thi Tran https://orcid.org/0000-0003-1863-6739

Philippe Ravaud https://orcid.org/0000-0001-8264-9206

Tamás Bereczky https://orcid.org/0000-0003-1314-556X

Laetitia Huiart https://orcid.org/0000-0002-5401-1958

Guy Fagherazzi https://orcid.org/0000-0001-5033-5966

Article

Publisher ID: v23i12e25743

DOI: 10.2196/25743

PMC ID: 8738987

PubMed ID: 34941554

SO-VID: 1ea92d49-e576-4c3e-b0e1-c4fde24a75f3

Copyright © ©Gloria A Aguayo, Catherine Goetzinger, Renza Scibilia, Aurélie Fischer, Till Seuring, Viet-Thi Tran, Philippe Ravaud, Tamás Bereczky, Laetitia Huiart, Guy Fagherazzi. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 23.12.2021.

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

History

Date received : 13 November 2020

Date revision requested : 17 December 2020

Date revision received : 16 January 2021

Date accepted : 8 October 2021

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