Working with our strategic Patient and Research Group we have co-produced an evaluation framework to capture and understand the difference PPI makes for research, researchers and PPI Contributors. You can read more about the framework and how it was developed here.
As part of the framework we have developed an evaluation questionnaire that asks researchers to reflect on the difference patient and public involvement has made. The questionnaire focuses on areas the Patients and Research Group identified as most important. This is report shares feedback provided by fourteen researchers we worked with between December 2020 and March 2021.
How has PPI made a difference to your research?
All of the researchers replied that their research projects have been directly impacted by the PPI activities, specifically in the following areas:
We asked what were the most important changes that had taken place as a result of the PPI. Responses highlighted the following areas:
- “Discussing key concepts and ideas about the project with stakeholders has helped to structure the future direction of the project. It has also identified that we need to incorporate and understand carer perspectives, as well as patient perspectives.”
- “Questionnaires and consent form re-worded in line with feedback to aid readability. Postal questionnaires also now an option to increase accessibility for older populations.”
- “I conducted a series of interviews and focus groups with a PPI panel who have a lived experience of a serious mental illness like schizophrenia or bipolar disorder. Their contribution proved invaluable. Though my research idea itself hasn’t changed, their feedback has firmly directed my future actions. For example, I applied for a big data project and ensured the outcomes that matter to them (i.e., weight gain) are included. This project has subsequently received ethical approval. I also led a qualitative and systematic review, and their views provided a sound footing for data interpretation. Ultimately, their insight has meant our research is more relevant and worthwhile.”
- “Being able to pilot my study and talk it though with someone in the PPI group helped me to think more about the participant experience and helped me to notice a few things I hadn’t seen when going through it myself. This has been so important for my study in particular because (due to the pandemic) I have had to put the whole study online, so I don’t have the opportunity to explain the instructions for completing the study in person – [it] felt really important to get the wording online as clear and accessible as possible.”
We asked the researchers to anticipate the longer-term impacts that the PPI would have. Responses included:
- “I think making sure the day-to-day patient experience is a positive one will be the one that is affected the most by PPI because PPI challenges us to always bring our research back to the lived experience of the patient.”
- “Guiding future research questions, providing evidence for what aspects of resilience patients consider most relevant.”
- “We have now completed an initial draft of our review; within the review we have proposed several future research ideas, which we are now in the process of deciding which to develop into clinical studies. Many of these ideas come as a direct result of our consultations, such as a service-evaluation type study that attempts to understand the short-comings of current practice when working with persons with depression and cognitive impairment.”
Did PPI increase your understanding of patient, carer or participant experience?
All of the researchers responded that the PPI had increased their understanding of patient, carer or participant experience. Examples given included:
- “Patients and carers gave us direct information about how they might experience our decision-making tool, and how they understood certain language and ways of putting across information.”
- “Understanding the patient journey and the vulnerability felt by patients when they are being seen by staff.”
- “I think the PPI work I did helped develop/refine some of the understanding I already had from my clinical experience, in terms of the aspects of my research that are most important to patient/carer groups, and reservations that may be held, based upon individual’s own experiences. So one example was the importance of striving for a more transparent risk assessment process, which came out quite strongly.”
Did PPI increase your confidence in communicating research to a public audience?
Ten researchers felt their confidence in communicating research to a public audience had increased through the PPI. Examples of how included:
- “Violence can be a difficult topic to broach and the work certainly increased my confidence in being able to talk about this sensitively to non-clinical audiences.”
- “Thinking about how to explain the project and talking it through with someone not of a research background helped me to think about how to put across the background of the study/approach/things we are hoping to find out etc in a way that was concise and (hopefully!) interesting – which was a useful experience and prepared me for presenting the research to potential participants. In particular, the kind of questions the PPI member asked helped me to think about the kinds of things that the public/potential participants would be interested in knowing, and highlighted gaps in the information I was thinking it was important to share about the project in recruitment materials.”
- “The experience of being able to speak to individuals with lived experience of depression in the context of research has been highly helpful in terms of my personal development. I feel that I can better speak and communicate in a language that is more valued by patients and the general public, rather than ‘academic speak’ which is often quite convoluted and a barrier to entry. I feel I can more confidently speak about cognitive impairment in depression, for having heard and listened to the experiences of the individuals I spoke to.”
Did PPI support you to consider equality, diversity and inclusion (EDI) in your research?
Ten researchers responded that the PPI had helped them to consider EDI in their research. Examples of how PPI had made a difference included:
- “It showed us how diverse participants are in their desires, experiences and needs. Because of the PPI group, we are looking (as a priority) of ways we can actively consider equality, diversity and inclusion in our future research.”
- “Considering potential barriers to research engagement like access to and confidence in IT.”
- “A really helpful suggestion was made to change the working of one of the items in my online survey from ‘church’ to ‘place of worship’, which will hopefully make the survey more inclusive. This was an oversight on my part that I wouldn’t have spotted without the PPI member.”
- “[The PPI] has challenged me to think differently about patients from various ethnic backgrounds and potential problems associated with the new technologies we develop and how they can affect patients.”
- “Around one quarter of the [PPI] members considered themselves belonging to an ethnic minority group. As such, I was able to identify additional priorities for them that are different from the general population.”
Did you learn something from PPI that that will influence future work?
Twelve researchers responded that they had learnt something from the PPI that will influence their future work. Examples include:
- “Not a learning as such, but a definite reminder of the need to include PPI from the very beginning of the research cycle, including when thinking about grant applications.”
- “The importance of language, and further the specificity of terms used when discussing violence and associated interventions.”
- “As someone who is not clinically trained, I learned what the lived experience of a diagnosis can be like for some people. For instance, it’s one thing reading about a diagnosis and interventions to support their management, it’s quite different hearing how that translates to their day-to-day life. This helped me appreciate the range of challenges people with severe mental illness experience, and hence consider what we might do to better support them.”
- “Through this process I have learnt so much about the different ways PPI can be involved at different stages of the research process. [I] Would feel more confident to involve PPI at earlier stages of future projects and in a more collaborative way in terms of designing research.”
- “The main lesson I learnt is to look how the patients perceive my research ideas and how to account for their vision, concerns and needs.”
- “I feel I have learned most of all the value of PPI in research. I believe that the richness afforded by PPI really raises the quality of a clinical research project. As a result, I will strive to continue to embrace PPI in any future research activity I undertake.”
Thank you to the researchers and PPI contributors that have contributed to helping us evaluate and understand the difference patient and public involvement makes to research, researchers and PPI contributors.