By Beth Bareham, PhD student at Newcastle University
Before I started my PhD, I had no idea about patient and public involvement and how important it is for research projects. This quickly changed when the subject was introduced in my first supervisory meeting. From the beginning, I was aware that PPI would be an important component of my project, but wasn’t sure how or why! The Institute for Health and Society at Newcastle University places great importance on PPI, and I attended all the training sessions available in the first year of my PhD. When I started to think about applying for ethics, this seemed like the ideal time to seek advice on my design from my target group. My project is related to ageing, so I was fortunate that Newcastle University already had a large organisation of older adults, under the name ‘VOICENorth’, who were willing to help with the research process. Because my area – drinking in later life – is familiar to most older people, members were very enthusiastic to be involved. By chance, high demand for slots at group sessions meant that I was able to organise my own working group, rather than giving a presentation in a bigger meeting. This meant that I was able to select an even number of men and women from across the age spectrum, from a long list of volunteers.
I held a meeting in my department and invited the VoiceNorth members to come along. The group session was very useful, and I was able to put forwards numerous questions on the design of my study. The attendees shared their views on areas where I was uncertain, or which needed to be shaped by the target population. The question ‘how old is old’ was raised, which was a question I had been struggling with for some time. Their ideas reflected the uncertainty within the literature, but their straight talking helped me have confidence in my own decisions. The group were keen to stress that I was the researcher and should have the final say, however they were happy to provide their opinions. I also received comments on my interview topic guide, recruitment strategy and even my outfit for interviews (they were keen that I presented myself as a professional researcher). They were quick to offer to reword and shorten the lengthy written text in my recruitment flyer. This led to an email conversation with the group, where they track-changed my materials very effectively. They were able to communicate my words in a no-nonsense way, whilst I had been struggling at my desk, out of touch with my target group.
The PPI groups’ perspective provided great insights, but wasn’t without limitations. When responding to the question ‘what characteristics might affect how older adults drink’, my white-British committee were adamant that cultural background was not important. This conflicted with the findings of my systematic review and I still feel that it is important to make sure my participants are as culturally diverse as possible. Nonetheless, their input shaped large portions of the methods proposed in my IRAS application for ethical approval. Whilst writing up my report from the session, I reflected that even tangential-discussion was relevant, and could inform my topic guides. I am still in touch with the group through email and now consider them an ‘advisory committee’. Since the session, they have helped recruit a large number of participants for my study through contacts and affiliations with other groups. Many are keen to participate themselves, and some have offered to help me pilot my interview schedule. My experience with my new PPI collaborators has been, and continues to be, extremely valuable. They have helped me to develop a more robust and relevant study, and have greatly improved my confidence in my own work.
Beth won first prize for her poster ‘A qualitative systematic review of older adults’ and health and social care practitioners’ perceptions and experiences of alcohol consumption in later life’ at the SPCR ten year anniversary showcase on 22 November 2016.