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Completing the jigsaw puzzle: My patient and public involvement journey

Clinical Academic, Dr Charlie Dando, reflects on her journey to achieving successful patient and public involvement in her research work, and shares her top tips.

Research is a jigsaw puzzle. As a clinical academic I am just one of the puzzle pieces (as are the clinical team, the researchers, the academics, the participants and the public). Just like a puzzle, when you bring all of the pieces together, the image is clear to see. In healthcare, I believe this is also true; we all need to work together to fully understand the clinical problem.

In my role as a Research Podiatrist, I assess and treat people with foot pain and as part of this I use my research and academic skills to review and check the care my team and I provide is safe and effective.

When I first started research I thought it was solely my responsibility to solve the problems I was faced with. Little did I know that the key to all the answers was sitting right in front of me…literally - it was my patients! Unlike me, my patients can see across all the areas that needed improvement and have ideas about simple changes we could make which would improve the experience of using our service.

A particular patient once said to me: “Charlie, you do make me walk miles to see you?” It suddenly made sense - if you have foot pain, of course you don’t want to walk miles! By working with him and making simple changes to the clinic layout and location, I was able to solve the problem. Subsequently there was an improvement: the study accessed more people and in turn, the results from the study were used to change future practice. I thought…if one patient’s voice could achieve all this; imagine what several voices could do! This is the moment that I began to truly value patient and public involvement and the potential it has to transform the work I do.

So, what exactly is ‘involvement’, I hear you ask. Referred to as ‘public involvement’ by national advisory group INVOLVE, it is defined as ‘research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them’. This means research should be designed and conducted in partnership with people who are experiencing or have experienced the perceived clinical problem.

Since my epiphany, I have been passionate about involving patients at every stage of my work. However, as with anything, there have been some challenges along the way. For example, communication needs can vary from person to person. I’ve had to learn to be flexible in my approach and what I ask of each person. This might mean travelling to their home or alternatively having a telephone conversation outside of the conventional working hours due to other commitments. It can be time consuming and sometimes individuals will need more support than others to share their story. Working with groups of patients can also be a challenge with regards to ensuring everyone is heard and everyone has a voice without the focus being lost. It’s so easy to go off on a tangent.

As my own experience in research has developed, I have learnt that there are many ways for people to get involved. Patients are definitely at the heart of it. Here at Solent, we use patient and public involvement as a way to make sure our research benefits the people we care for. This means there is always space for another puzzle piece.

For those of you that are about to embark on your patient and public involvement journey, I have put together my top tips to help you on your way…

1. Listen and listen a little more

For a health professional the hardest thing to do is to listen to a patient without interrupting or trying to problem solve. Over the years, I have found that listening provides most of the clues for what to do next.

2. Sharing

To share your idea or study design with someone else can feel a little uncomfortable. No one likes bad feedback. However, engaging with patients at an early stage can help to transform your study for the better and positively affect how it recruits, delivers, and disseminates the findings afterwards. When working with people I am always inspired by their creativity and generosity to support me and the research study.

3. Say hello

For everyone I meet, I always say ‘hello’ and introduce myself. This could be in clinic, at a conference, on a training day or just out and about. I do this because I never know who I might meet next - they could be the one who could help me to understand what I need to do to improve my service.

4. Give back

I always try to give back; whether that is through presenting my work, sending ‘thank you’ cards or providing tea and cake. At this point, I usually know the individual(s) well as they have been on the research study journey with me but they come with their own reasons for helping. I try to understand these and see if I can support or help.

5. Remember to plan for public involvement

If you're applying for a research grant or fellowship, think about where, when and how you will use patient and public involvement effectively and appropriately. This is a key section on most applications. This will also allow you to budget and fund the gestures of thanks such as a ‘thank you’ party, vouchers, coffee and cake or even provide you with time out of clinic to talk to people.

6. Remember your manners

If you ask people for help make sure you take the time to feedback to them how their support has or will change the problem. You can be as creative as you like. You could send out cards, online video or even present face-to-face. The possibilities are endless.

7. Be brave and ask for help

Don’t be afraid to ask for help or to talk to people. You will be surprised at how willing people are to help out if they can. Get to know the people who can help you. If you’re new to this or want some extra support, find out within your organisation or network who does public involvement activities and who does it well. Remember you’re a puzzle piece so you need other puzzle pieces too - otherwise you’re just lost!


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