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Review
. 2023 Jun 1;52(6):afad082.
doi: 10.1093/ageing/afad082.

Including older people in health and social care research: best practice recommendations based on the INCLUDE framework

Victoria A Goodwin  1 , Mikaela S A Low  2 , Terence J Quinn  3 , Emma J Cockcroft  1 , Victoria Shepherd  4 , Philip H Evans  1   5 , Emily J Henderson  6 , Farhat Mahmood  7 , Mary Ni Lochlainn  5   8 , Catherine Needham  9 , Benjamin R Underwood  10 , Amit Arora  11 , Miles D Witham  12
Affiliations
Review

Including older people in health and social care research: best practice recommendations based on the INCLUDE framework

Victoria A Goodwin et al. Age Ageing. .

Abstract

Background: Older people are often explicitly or implicitly excluded from research, in particular clinical trials. This means that study findings may not be applicable to them, or that older people may not be offered treatments due to an absence of evidence.

Aims: The aim of this work was to develop recommendations to guide all research relevant to older people.

Methods: A diverse stakeholder group identified barriers and solutions to including older people in research. In parallel, a rapid literature review of published papers was undertaken to identify existing papers on the inclusion of older people in research. The findings were synthesised and mapped onto a socio-ecological model. From the synthesis we identified themes that were developed into initial recommendations that were iteratively refined with the stakeholder group.

Results: A range of individual, interpersonal, organisational, community and policy factors impact on the inclusion of older people in research. A total of 14 recommendations were developed such as removing upper age limits and comorbidity exclusions, involving older people, advocates and health and social care professionals with expertise in ageing in designing the research, and considering flexible or alternative approaches to data collection to maximise opportunities for participation. We also developed four questions that may guide those developing, reviewing and funding research that is inclusive of older people.

Conclusion: Our recommendations provide up to date, practical advice on ways to improve the inclusion of older people in health and care research.

Keywords: inclusion; older people; recommendations; socio-ecological model.

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Conflict of interest statement

None.

Figures

Figure 1
Figure 1
Intersectionality of factors that may impact on the inclusion of older people in research.
Figure 2
Figure 2
NIHR INCLUDE Roadmap (reproduced from Witham et al. [13] under CC-BY-4.0 licence).
Figure 3
Figure 3
Theory of Change for improving the inclusion of older people in research.
Figure 4
Figure 4
SEM representing the multi-level factors that may impact on the inclusion of older people in research.
See this image and copyright information in PMC

References

    1. National Institute for Health and Care Research , Improving Inclusion of under-Served Groups in Clinical Research: Guidance from INCLUDE Project. UK: NIHR, 2020: https://www.nihr.ac.uk/documents/improving-inclusion-of-under-served-gro....
    1. Sheehan KJ, Fitzgerald L, Hatherley Set al. . Inequity in rehabilitation interventions after hip fracture: a systematic review. Age Ageing 2019; 48: 489–97. - PubMed
    1. Licchetta M and Stelmach M, Fiscal Sustainability and Public Spending on Health. UK: Office for Budget Responsibility, 2016. https://obr.uk/docs/dlm_uploads/Health-FSAP.pdf.
    1. Carvalho do Nascimento PR, Ferreira ML, Poitras S, Bilodeau M. Exclusion of older adults from ongoing clinical trials on low back pain: a review of the WHO trial registry database. J Am Geriatr Soc 2019; 67: 603–8. - PubMed
    1. Cruz-Jentoft AJ, Carpena-Ruiz M, Montero-Errasquín B, Sánchez-Castellano C, Sánchez-García E. Exclusion of older adults from ongoing clinical trials about type 2 diabetes mellitus. J Am Geriatr Soc 2013; 61: 734–8. - PubMed