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Can a ‘consent to contact’ community help research teams overcome barriers to recruitment? The development and impact of the ‘Research for the Future’ community

BACKGROUND: Recruitment to health research remains a major challenge. Innovation is required to meet policy commitments to help patients take part in health research. One innovation that may help meet those policy goals is the development of ‘consent to contact’ systems, where people give generic co...

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Autores principales: Grady, Katherine, Gibson, Martin, Bower, Peter
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6805518/
https://www.ncbi.nlm.nih.gov/pubmed/31640600
http://dx.doi.org/10.1186/s12874-019-0843-4
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author Grady, Katherine
Gibson, Martin
Bower, Peter
author_facet Grady, Katherine
Gibson, Martin
Bower, Peter
author_sort Grady, Katherine
collection PubMed
description BACKGROUND: Recruitment to health research remains a major challenge. Innovation is required to meet policy commitments to help patients take part in health research. One innovation that may help meet those policy goals is the development of ‘consent to contact’ systems, where people give generic consent to be contacted about research opportunities. Despite their potential, there are few empirical assessments of different ways of recruiting patients to such communities, or of the value of such communities to local research teams. MAIN TEXT: We describe the development of the ‘Research for the Future‘consent to contact community, outline the recruitment of patients to the community, and present data on their participation in research. DISCUSSION: Over 5000 people have been registered across 3 clinical areas. A range of recruitment strategies have been used, including direct recruitment by clinicians, postal invitations from primary care, and social media. In a 1 year period (2016–2017), the community provided over 1500 participants for a variety of research projects. Feedback from research teams has generally been positive. SUMMARY: The ‘Research for the Future‘consent to contact community has proven feasible and useful for local research teams. Further evaluation is needed to assess the cost-effectiveness of different recruitment strategies, explore patient and researcher experience of its advantages and disadvantages, and explore how the community can be more reflective of the wider population.
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spelling pubmed-68055182019-10-24 Can a ‘consent to contact’ community help research teams overcome barriers to recruitment? The development and impact of the ‘Research for the Future’ community Grady, Katherine Gibson, Martin Bower, Peter BMC Med Res Methodol Debate BACKGROUND: Recruitment to health research remains a major challenge. Innovation is required to meet policy commitments to help patients take part in health research. One innovation that may help meet those policy goals is the development of ‘consent to contact’ systems, where people give generic consent to be contacted about research opportunities. Despite their potential, there are few empirical assessments of different ways of recruiting patients to such communities, or of the value of such communities to local research teams. MAIN TEXT: We describe the development of the ‘Research for the Future‘consent to contact community, outline the recruitment of patients to the community, and present data on their participation in research. DISCUSSION: Over 5000 people have been registered across 3 clinical areas. A range of recruitment strategies have been used, including direct recruitment by clinicians, postal invitations from primary care, and social media. In a 1 year period (2016–2017), the community provided over 1500 participants for a variety of research projects. Feedback from research teams has generally been positive. SUMMARY: The ‘Research for the Future‘consent to contact community has proven feasible and useful for local research teams. Further evaluation is needed to assess the cost-effectiveness of different recruitment strategies, explore patient and researcher experience of its advantages and disadvantages, and explore how the community can be more reflective of the wider population. BioMed Central 2019-10-22 /pmc/articles/PMC6805518/ /pubmed/31640600 http://dx.doi.org/10.1186/s12874-019-0843-4 Text en © The Author(s). 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Debate
Grady, Katherine
Gibson, Martin
Bower, Peter
Can a ‘consent to contact’ community help research teams overcome barriers to recruitment? The development and impact of the ‘Research for the Future’ community
title Can a ‘consent to contact’ community help research teams overcome barriers to recruitment? The development and impact of the ‘Research for the Future’ community
title_full Can a ‘consent to contact’ community help research teams overcome barriers to recruitment? The development and impact of the ‘Research for the Future’ community
title_fullStr Can a ‘consent to contact’ community help research teams overcome barriers to recruitment? The development and impact of the ‘Research for the Future’ community
title_full_unstemmed Can a ‘consent to contact’ community help research teams overcome barriers to recruitment? The development and impact of the ‘Research for the Future’ community
title_short Can a ‘consent to contact’ community help research teams overcome barriers to recruitment? The development and impact of the ‘Research for the Future’ community
title_sort can a ‘consent to contact’ community help research teams overcome barriers to recruitment? the development and impact of the ‘research for the future’ community
topic Debate
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6805518/
https://www.ncbi.nlm.nih.gov/pubmed/31640600
http://dx.doi.org/10.1186/s12874-019-0843-4
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