When Andrea Shelley arrives to talk about her patient and public involvement (PPI) journey, her willingness to contribute is apparent from the get-go. ‘To share what you’ve been through is key to making the NHS work’ she says, fresh from a session volunteering at the local arts centre on her day off from a demanding, public-facing, role. ‘I started out with PenPIG (PenCLAHRC’s Patient Involvement Group) two years ago. I went to meetings, heard things and had no idea what was going on. I was confident in my voice, in my experience, but I wasn’t confident in asking questions’. Invited by the team to help develop training for those new to involvement she says, ‘I thought, yes, I’d like to pick at the pieces to see what you needed to be involved.’
Now, two years on, Andrea is a co-author on a research paper, ‘What can I do that will most help researchers?’ A different approach to training the public at the start of their involvement,’ as a result of the training programme that she helped to develop. ‘Andrea was there from the word go’, says co-author, PenPIG member and Andrea’s mentor, Emma Cockroft.
INVOLVE, a national NHS advisory group that supports public involvement in health and social care research defines public involvement as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. ‘Patient and Public involvement (PPI) is increasing,’ says Andrea, ‘as it is increasing there will be more people who will be new to involvement…so this training is perfect. The message is that you are valuable, we need you… you can make a difference just by sharing your story.’
‘Emma and I came up with the concept of the skill of involvement – the ability to listen, hear what’s being said, to reflect and digest it, not to tell the same story over and over again; to pick out the pieces that are relevant to the particular research project… it was about being a human being, not knowing about the technical side of research, about having the ability to reflect and to share what you know.’
Previous training had concentrated on the technical aspects of research – the what and the how, but together the team identified the need for an additional emphasis – to listen to what is being asked, work out what is missing and use individual experience to fill the gap, resulting in greater impact for projects by providing more relevant information to researchers. But, Andrea says, it is also important that the training should be a ‘two way process’. ‘Researchers need to understand how to ask the right questions and be open to outcomes, to have conversations without undermining the patient experience.’ Identifying those key skills necessary for both parties to communicate in more effective ways was a fundamental of the programme.
After a couple of trial sessions in which the team received feedback and tweaked the programme, Andrea travelled to Bristol to help deliver it to a group of researchers. Here she presented a personal reflection on her journey and answered questions from the group. ‘However competent and capable you are in your own world,’ she says, ‘coming into a new one can be daunting. You need a bit of extra support. The training package does that because it acknowledges the skills people have already’. Emma Cockroft said ‘feedback was very positive about Andrea’s involvement. You want a patient who has just begun to get involved and found a way for themselves’.
Andrea enjoyed being part of a research team and was bowled over by the level of support she received from the other team members. ‘They supported me, acknowledged me, thanked me when I’d made a valid contribution, those moments when I didn’t, they kept silent about – they were just incredible, amazing women, when you think their role is to do the training and see it through to fruition and they took me on as well.’
Andrea now performs peer reviews for NIHR, reviewing research funding applications, and is ready to take on her next PPI challenge when it arises. ‘I went from zero to hero, but I didn’t feel any of the journey, it just seemed really natural. It has increased my confidence and awareness in the power of positive thought, of positive criticism, of listening, reflecting – great tools I use a lot now, in day to day life. I’d like to think everyone would pick up the same skills through the training.’
We all aspire to make a difference and I have found that Patient and Public involvement is a really effective way to do that. Over the last 18 months, I have been working with PenCLAHRC to give a patient perspective on being new to involvement and what tools are needed starting out. I only started my PPI journey 2 years ago and I feel that I have gone from “Zero to Hero” as I have just become a co-author on a publication “’What can I do that will most help researchers?’ A different approach to training the public at the start of their involvement in research” The journey led me to learn so much and work with three amazing researchers that supported me through my PPI and personal development.
Initially I wasn’t entirely clear as to what was needed from me, however with my mentor I was guided and helped to share my experience as it happened, it wasn’t onerous, it seemed so natural to share what I knew and bring a lay person perspective to working with research and researchers. I didn’t understand all aspects of research and the various processes, but that was the point…my ‘lack of knowledge’ was exactly what was needed.
As the project developed, my confidence grew, alongside my understanding and input into developing some aspects of the training, and one part in particular! A throwaway remark “why not have a Chinese whisper’ formed a small afternoon ice-breaker, I also was asked to deliver this aspect of the day. This encouragement to play an active part in the training day with all the researchers led me being given a privileged role of sharing my story first hand with those experiencing the training day.
These small steps, led to the opportunity to contribute to the paper that has now been published and allows me to say “I am a co-author.” I feel incredibly proud to have been involved with something I know will help other people starting out on their PPI journey (just like me all those months ago), and all I had to do was use my lived experience and put it to good use: Researchers and the public working together to make a difference.
3 March 2019