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Case study: “How PPI stopped me in my tracks”

“How public involvement stopped me in my tracks, even before applying for funding!”: Dr Grace Lewis on the importance of listening and learning when designing research.

This blog post is authored by Dr Grace Lewis. Grace is a medical doctor training in older people’s medicine and working in hospitals across the region. She is also an early career researcher with an interest in frailty and multiple chronic health conditions. Her PhD investigated frailty in older people living in rural northern Tanzania. 

The proposed title of my research project was “Having better conversations with and about people living with frailty in acute healthcare settings in the North-East of England”. Frailty as a concept has fascinated me for many years now. During my PhD I have delved deep into the nuances of frailty in older age: I have considered it as a biomedical syndrome; helpful to risk-assess and stratify older people according to their likelihood of poor response to hospital treatments. I have also explored it as a social construct, which frames older people with frailty as a vulnerable and burdensome group of “others” existing outside the margins of normal everyday life and outside the realm of comfortable thought.

It is recommended that older people admitted to hospital are assessed, and their level of frailty identified early. During the Covid-19 pandemic, frailty screening was recommended as a way to help doctors to determine likely outcomes in older hospitalised people and guide difficult decisions on how to prioritise care, given that critical care resources were limited. The most commonly used tool, the Clinical Frailty Scale asks healthcare professionals to rank individuals with a number on a scale from 1 (fit) to 8 (very severely frail) or 9 (terminally ill), and uses a simple description and image to indicate what type of activities an older person may be able to do and what support they require at different points on this frailty trajectory. I spoke to six volunteer members of the Elders Council of Newcastle when developing this research idea for having “better conversations”. But how quickly and effectively they challenged my thinking and research priorities. The project is completely different and hugely improved, for their input.

When seeking to have “better conversations” with and about people living with frailty, the Elders Council members challenged me to describe what “better” would look like. “Better” according to whom? “Better” than what? From older people’s perspectives, they astutely explained, a good conversation is a “two-way” conversation. So if frailty assessments are happening to you when you come into hospital, and these frailty scale scores are not up for debate, there is no conversation to improve. This is a one-way process, not a two-way conversation.

But, they agreed, the conversations informed by these frailty assessments should be investigated. From the Elders Council members’ perspective, the Clinical Frailty Scale was somewhat flawed. They argued, older people are not on a negative declining trajectory as it implies. The number and frailty label given is a crude and inaccurate representation of what it is like to live day-to-day with fluctuating energy levels and physical abilities. Also, the terms “frail” and “vulnerable” are stigmatising and unhelpful for older people, and please don’t call us “elderly” either!

This hugely informative conversation with older volunteers with a wealth of life experience has led me to re-think the research project completely. Being stopped in your tracks, particularly when developing your research idea, could have been disheartening, but if you are willing to really listen to feedback, I think it can help make your project one that really serves the population your research is aiming to help.

 

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On behalf of the NIHR Research Design Service North East and North Cumbria (RDS NENC), we extend our thanks to Dr Grace Lewis and to members of the Elders Council of Newcastle for sharing their experience. We are delighted to be supporting Dr Lewis to embed patient and public involvement in her work; click here to visit the RDS NENC Public Involvement page, and find out more about the support available to health and social care researchers in the region.