Using nursing skills to explore unequal research access
Using nursing skills to explore unequal research access
CPFT Clinical Research Nurse Binnie (Lynda) Barnes (pictured) shares her varied career journey into research and an exciting new role with our local NIHR partners investigating barriers to dementia research participation.
I trained as a nurse at St. Bartholomew’s Hospital, London in the 1980’s and started my career setting up an intensive home care scheme for frail elderly people. I moved on to training and development roles and went back to the floor working as a cardiac rehabilitation exercise practitioner at Papworth Hospital following a master’s degree in fitness and health.
Other roles included widening participation in Allied Health Professional careers and then working as a disability analyst for the Department of Work and Pensions - the toughest and most humbling nurse-related post I’ve ever had, which helped me understand how health, poverty, education and life chances can’t easily be separated.
I began my research nurse career at Leicester Glenfield Hospital in 2015, supporting a study that looked at online cardiac rehabilitation, and then taught care apprentices for a few years. During the pandemic, I answered the call for nurses to return to deliver vaccinations and joined CPFT’s Windsor Research Unit (WRU) in 2021 as a clinical research nurse, refreshing my skills and learning new ones!
I’ve lived in Peterborough for many years and had become increasingly aware that the infrastructure for research delivery and clinical trials needs to develop for the north. Throughout my career, particularly as a disability analyst, I’d always noticed disparities in access to education, healthcare, and now research, for under-served groups.
When the National Institute for Health and Care Research (NIHR) Cambridge Biomedical Research Unit (BRC) dementia theme secondment came up, it seemed like a great way to use my work experience over the last 40 years to give back to my local community. Over two days a week for up to three years, the role gives me the opportunity to engage with diverse community groups and third sector support organisations in Peterborough and Fenland to investigate unequal research access.
The remit for the secondment is incredibly broad - which makes it liberating and exciting – to identify barriers to research participation in under-served groups in Peterborough and Fenland, such as travellers, veterans, homeless and ethnic minorities. Increasing participation will then ultimately require commitment to engage with these groups over time, so that they view it as their right to take part in research and can actively ask about it. Offering dementia research also needs to be the norm for all health staff working with them, reflected in care pathways and medical records. This post will look at how carers and patients can find help to be involved in dementia research and navigate the system, translating engagement theory into practical support.
For the first 40 days, I aim to have as many conversations as possible to gather comments, putting individuals and their views and experiences at the centre, as nurses always do! I’ll be meeting carers who provide most of the daily care and navigate support systems for people living with memory loss or dementia. I’m also working with dementia delivery services, CPFT teams in the north and services supporting people in local communities, looking at baseline data for current research engagement and health demographics for Peterborough and Fenland, and considering how research opportunities are offered around care pathways for different people.
I had actually decided to partially retire and work three days just before I spotted the secondment opportunity, which started in March. Currently, I work two days on this BRC role and one day as a clinical research nurse at WRU. Balancing delivery of these roles requires a flexible approach which has been a stimulating and fun challenge so far! I rearrange the working hours to accommodate community events, if a dementia carers’ group meets in the evening or on a non-working day. It is a joy to be invited to these events; I recently attended a Nepalese celebration and met their community champions to discuss how to extend recent health system engagement work to dementia research participation. I’m also hoping to engage particularly with south Asian and traveller communities over the next few months.
This role is funded by the NIHR BRC with expenses covered for travel, venue hire and hospitality for community groups. Support from CPFT staff, service managers and dementia teams has been marvellous, helping me with contacts and understanding how services fit together. The Windsor Research Unit, Alzheimer’s Society, Peterborough Council Voluntary Services, public health professionals, carer groups and the Cambridgeshire and Peterborough Integrated Care Board Research and Development team have also been very helpful. In a few months’ time, I will have the opportunity to share early feedback to then shape future workstreams.
People can help with this work by giving their time and honest views about why they do or don’t take part in dementia and memory research, or for health staff - why they might or might not ask individuals to take part. It would be great to hear from others addressing health inequalities and engaging with people from under-served groups to share learning and the best approaches. Ideally, we need to build a local network of expertise for dementia research engagement with these communities that can contribute to a toolkit for everyone around the country to engage well. Contact me to get involved: Lynda.barnes@cpft.nhs.uk
For nurses interested in research, a key starting point is our professional Nursing and Midwifery Council standard which requires all current and future nurses to be research minded and to always practise in line with the best available evidence. We will all be patients one day and research is the foundation to improve future care for everyone and their families.
At CPFT, you can ask any colleagues doing research what it involves and find out more if you are asked to help recruit patients to a study. You can also take part in studies as a healthy volunteer to experience research directly in online surveys, interviews, or trials of health interventions like coaching. All staff can help to give the green light for research, by asking and recording in health records if patients would like to be contacted about suitable studies by our research staff. Everyone at CPFT and people using our services can contact the Windsor Research Unit for support and information.
All staff can find links on CPFT’s Research website and intranet to get started in research. The online training for Good Clinical Practice with NIHR Learn is a great piece of CPD for any nurse to complete, covering the basics of what to consider for research and helping to understand the language used. The CPFT Library, professional bodies and unions also have resources to support your development in research.
