ENRICHEnabling Research in Care Homes
Including older people in research – why wouldn’t you?
Vicki Goodwin MBE, Professor of Ageing and Rehabilitation, NIHR Applied Research Collaboration South West Peninsula (PenARC) at the University of Exeter.
Older people are often excluded from health and social care research. This blog discusses recently published recommendations are trying to address this issue.
I’ve been a physiotherapist for 28 years and I always knew I wanted to work with older people. I like to chat, as anyone who knows me will attest. Older people have so many interesting things to tell you; funny stories, wise words, varied careers, lived experience of life and love. I wanted to learn from them and understand how I could help them.
I officially became an academic in 2010, and my desire to improve things for older people continued. But it soon became clear that older people weren’t everyone’s priority despite them being the greatest users of healthcare. I read studies that were relevant to my patients, but often older people were excluded, sometimes purely on the basis of their age or for having more than one thing wrong with them.
I’ve been involved in rehabilitation studies where ethics committees have said we can’t include older people with cognitive impairment. Hugely frustrating and as far as I was concerned, unethical, because the evidence we would produce wouldn’t be generalisable to my own patients. Since 2020, things have started to change. The National Institute of Health and Care Research (NIHR) ‘Improving inclusion of under-served groups in clinical research (INCLUDE)’ guidance was published finally bringing inclusivity to the forefront of clinical research in the UK. For those of us working with older people this wasn’t new, but it gave a multidisciplinary team of people and members of the public an opportunity to try and share with others why it is important to include older people in research. So, we reviewed the literature and had various workshops and discussions and came up with the following recommendations:
1a. Studies should not have upper age limits in inclusion criteria
1b. Studies should be designed to be inclusive of those with cognitive impairment
1c. Studies should not have comorbidity exclusions (except where there is an intervention contraindication)
1d. Use of clear explanations of why research is relevant to older people’s health and wellbeing
2a. Advocates and peers should be involved in designing research that meets the needs of older people
2b. Health and social care professionals with expertise in ageing should be involved in designing research that meets the needs of older people
2c. Communication about research should be tailored to the needs of older people
2d. All older people who meet the eligibility criteria should be offered the opportunity to participate in research
2e. Consider the involvement of carers or family members and the impact involvement can have on them and the older person
3a. Those commissioning, funding and approving research should ensure the inclusion of older people and intersectional factors, such as demographics and health status, have been considered
3b. Those commissioning, funding and approving research should include older people and those with expertise in ageing
4a. Researchers should consider different and flexible approaches to promote accessibility of the research e.g. financial support to attend research centres or offering home visits for data collection
4b. Support, or alternatives should be offered to digital data collection and interventions
5a. Policymakers should consider the impact of policies on health inequalities in research participation
We also highlighted four questions that may guide those developing, reviewing and funding research relevant to older people:
1. Engagement: Are representative older people, their family members, advocates, and those with experience of working with older people involved in designing the research?
2. Inclusive study design: Has consideration been given to where the research takes place, how researchers interact with older people and family members and what happens during interactions to maximise the accessibility of research to older people and family members? This may involve piloting study procedures to ensure they are feasible and acceptable.
3. Resources: Have adequate infrastructure and financial resources been costed into funding applications to maximise participation, minimise withdrawals and ensure recruitment targets are met? There is a need to recognise that studies involving older people and family members may require additional resources, such as staff time and travel to conduct face-to-face recruitment and data collection at the person’s home.
4. Communication: Have a range of approaches to communicating with older people and family members about research been considered in terms of promoting the study, recruitment, data collection and dissemination.
These recommendations are applicable to anyone who conducts research that is relevant to older people. It doesn’t matter if you are developing new treatments or evaluation new models of care, the principles are the same. Older people are a diverse group of people with many living with good health, with others experiencing significant health and care needs.
Researchers should consider who is relevant to include when developing their research. For example, care home residents were disproportionally affected during the COVID-19 pandemic on so many different levels. So, when developing treatments or preventative
measures to prevent or manage future pandemics, care homes and their residents should be included in research activities.
If you would like to read more out the recommendations, please click here to read our academic paper.
If you are interested in reading more about the inclusion of different underserved groups in research you’ll find some fabulous resources of the TrialForge website by clicking here