Abstract
Background
Patient and Public Involvement (PPI) is increasingly advocated for undertaking research that is useful and relevant to those impacted by it. Funding bodies now include PPI as a mandatory part of funding programmes. Although researchers may be open to PPI research, the practicalities of this approach can be unclear. Therefore, we describe how we worked together to identify research priorities on a project called PPI-POWER (Patient and Public Involvement-Planning Our Work with Equity and Respect).
Methods
Our team comprises a person with intellectual disability, two parents of people with intellectual disability, a research officer and a researcher. We used a diary study approach to document the strategies we used to ensure everyone was heard and involved, building our partnership, successes, challenges, practicalities. We met approximately every six weeks. At the end of each meeting we talked about how we found preparing for and being part of that meeting.
Results
We use the PPI Ignite Network Values and Principles (2022) as a framework to present our experiences. Clear, open communication, transparency around expectations as well as flexibility, respect and understanding regarding responsibilities beyond the research were important issues that were necessary for successful working.
Conclusions
Careful, considerate teamworking supports the development of PPI partnerships that will be invaluable and impactful. Although our work relates to people with intellectual disability and their carers, the strategies we used can apply across different groups. Further, we make a number of recommendations that support respectful, collaborative working for those planning PPI research.
Keywords: Patient and public involvement, Research, Intellectual disability, Family carers
Patient and Public Involvement (PPI) research is about involving people who know about the research topic in the research team. It is an important way of doing research so it will help and matter to people who need the information.
Sometimes it is not clear how to do PPI research. This paper presents a real-life example of PPI working on a research team comprising a person with intellectual disability, two parents of people with intellectual disability, a research officer and a researcher.
The project is called PPI-POWER which stands for Patient and Public Involvement-Planning Our Work with Equity and Respect.
We share our experiences of doing PPI work together and what we did to make it work. We kept a diary or wrote short notes of how we worked together to identify a research goal.
In this paper we present what we did using the PPI Ignite Network Values and Principles as a framework.
We found a way of working together where we were all respected, included and listened to. We needed to keep communicating with each other so everyone was clear about what to expect or do.
We recommend starting a project with PPI partners as a good way of making sure they are heard.
Background
Public and Patient Involvement (PPI) is about doing research with people who know about the topic from their own lives. It is not about doing research to, about or for them. PPI is being recommended more and more for quality, impactful research [1]. Although there is a lot of PPI research available now, it is sometimes hard to know how PPI research works [2].
It might not be clear what PPI partners do in a project, or they might not be included in a genuine way in research projects [3, 4]. The idea of genuine inclusion or tokenistic inclusion is sometimes raised about PPI in intellectual disability related research. Being a PPI partner can be difficult for people with intellectual disability who communicate in alternative ways and family carers because of time and/or caring demands, research processes can be new and/or difficult to understand and sometimes extra support is needed. It is important to find a way past these problems.
In this paper we will share the methods we used to work together in a PPI partnership about identifying our research priorities. We will show how we put the PPI Ignite Network Values and Principles into the real world of PPI collaborating. We will start by sharing a little about ourselves and what we were trying to do through this project. We will also provide some background on the PPI Ignite Network Values and Principles before we share what we did together. We all contributed to writing this paper. Therefore, we use everyday language to share our story.
About Us
Our group came together to apply for the PPI Ignite @UCC Seed Funding Scheme. The fund wanted to establish/develop projects, activities and initiative to get PPI projects started. Anne-Marie and Kayleigh were familiar with each other having met at university activities and events. They had never worked together before. Mary, Lorraine and Joanne knew each other through Family Carers Ireland.
Anne-Marie asked Kayleigh if she would like to do a project because it is important that people with intellectual disability are included, and their opinions are heard. Kayleigh agreed and was excited to be part of this project. Anne-Marie then approached Joanne as Research Officer in Family Carers Ireland around the possibility of working with members of the Family Carers Ireland Research Advisory Group. Mary and Lorraine responded to the call for PPI partners. We submitted an application which was successful, and our PPI-POWER (Planning Our Work with Equity and Respect) project began.
Kayleigh Twomey graduated from the Certificate in Contemporary Living and Certificate in Disability Inclusive Practice programme in University College Cork in 2023. She has a mild intellectual disability and communicates using an alphabet board, eye-blinks, facial expressions, gestures and an i-pad app. She advocates for people who communicate in different ways to be heard. She wanted to be part of this project to show how people who don’t speak are an important part of research.
Mary Doyle-Kent is the mother and carer of her 20-year-old son, Pierce. She also works full time as a lecturer and researcher. Pierce has Angelman Syndrome and requires 24-hour nursing level care. For the last twenty years Mary has advocated for Pierce and reaches out to other families to share information. Mary believes carers voices need to be heard more, valued more, and that they should be pivotal in the future direction of their loved one’s lives.
Lorraine Woods is a mother and full-time carer to her adult daughter Rebecca. Rebecca has a rare degenerative condition, Sanfillipo Syndrome, and requires fulltime care in every aspect of her day. Through Family Carers Ireland, Lorraine advocates on behalf of carers and their loved ones.
Joanne Murphy is the Family Carers Ireland Research Officer. She facilitates Family Carers Ireland’s PPI Research Advisory Group and helps researchers contact family carers interested in their projects.
Anne-Marie is a lecturer in the School of Nursing and Midwifery, University College Cork. She studies how people interact with each other when one person has an intellectual disability. Anne-Marie is involved in a number of PPI research projects and regularly gives presentations and publications about this way of doing research.
Our team is diverse in terms of roles and expertise. We each have different perspectives, but we want to combine our expertise to do research that will inform support to people with intellectual disability and their carers.
Over eight months, we worked together to develop our innovative, meaningful PPI partnership and identify our research priorities in preparation for a grant application. Working together meaningfully was important to us to make sure the project would be meaningful. Meaningful collaboration must start with and be guided by values and principles. Therefore, we used the PPI Ignite Network Values and Principles Framework (2022) to inform and guide our work together.
PPI Ignite Network Values and Principles Framework (2022)
The PPI Ignite Network Values and Principles (2022) were developed through a series of online collective intelligence workshops that took place during 2021/2022 led by the Trinity PPI Ignite Office. Eight values and principles for PPI working were identified. These are Respect and Trust, Flexibility, Collaboration and Partnership, Transparency, Empowerment and Power Sharing and Equity and Inclusion. We will show how these values and principles are very clearly shown through our approach, ways of working and solving the issues we experienced while working together.
Aim
Our aims or goals on the PPI-POWER project were to….
Identify and document the positive and challenging issues of PPI working and strategies for making it work.
Identify and set research priorities in preparation for a grant application.
In this paper we share our experiences and learning from the first aim: to identify the positive and challenging issues of PPI working and the strategies we used to make it work.
Method
Ethical approval for this project was granted by University College Cork, Social Research Ethics Committee (log no.: 2024-001). We used a diary study approach where we recorded our experiences of working together including building our partnership, successes, challenges, practicalities. We recorded how we worked together, issues we needed to think about, approaches that worked for us and strategies we used to work better together. We met around every six weeks for eight months. We began each meeting with a brief recap of the last meeting. At the end of each meeting we talked about how we found preparing for and being part of that meeting. Anne-Marie took notes of what was discussed or we could email her and this became our diary note. This note was shared between us all to make sure it was correct. We talked about what coming to the meeting meant for us and what needed to be arranged. We discussed the ways we were communicating with each other; what worked or didn’t work? Should we use email, phone calls, text messages or reminders? We shared our experiences of being on the project. Was it what we thought? Were we expecting something different? Was there anything we were wondering about or wanted to say about it? We have nine diary notes because sometimes we met separately. We did not analyse these notes for themes. We use them to remember what we did to find a way of working together. Some of what we did might seem like “little things” so they can be easily forgotten. We wanted to remember them because these “little things” meant we could keep working together and the project didn’t fall apart.
How we worked together
Respect and trust
Respect and trust are important values in all interactions and are essential to PPI working [5, 6]. According to PPI Ignite Network [7] we show respect by recognising each other’s roles, knowledge, insights, experiences, strengths, limitations and contributions of the research team.
The groundwork for respect was set from the very beginning where we discussed what and why our contributions to the project are important. We chatted about why we wanted to be involved in this project, what we could and could not offer. This was also important for transparency and to manage expectations. Clarity around role expectations is important. Some PPI collaborators may find they have two roles as people with lived experience and as researchers. In this project, the discussion about ‘what we could and could not offer’ led to greater clarity around role expectations. Both parents discussed how their caring responsibilities limited how much time they had available to contribute. Similarly, Kayleigh only had availability to meet on Mondays as she attends work and sessional activities Tuesday to Friday. Therefore, all PPI partners agreed to contribute in an advisory role. Given the nature of this project was goal setting for future research opportunities, this worked well. However, if the work was around undertaking research more discussion around roles or contributions may be necessary.
We used our diversity and individual insights and experiences to understand the issues we were discussing more fully. This is one of the important reasons for doing PPI work [8]. We spoke about issues from our own perspective but also asked questions like ‘is this what it is like for you?’ or ‘do you feel the same?’ This encouraged everyone to share their experiences. It ensured everyone’s thoughts were heard and informed our work. We held a shared respect for our unique, shared and differing experiences.
Having this respect helped to establish trust. We agree with the PPI Ignite Network [7] that this takes time to develop. However, it can happen by communicating with each other in the right way and following through on agreements. Respect and trust were clear in the way we communicated with each other. We listened to and did not judge each other. We were patient and allowed enough time for everyone to say what needed to be said. We understood this project was just one part of our lives. We understood that we may not all always be available to meet or our circumstances might change. Emails and messages were always clearly written.
Reliability was part of building trust too. It is important that everyone does any tasks they agree to do and show up at meetings when they say they will. We let each other know when we couldn’t do a task or attend a meeting.
Lastly, we did not judge each other even when we had different opinions. We listened to each other and discussed our different thoughts until we found common ground. Other projects wrote about this being important too [1]. They talked about how important it was to feel comfortable in meetings and know that the people you are meeting won’t judge you.
Flexibility, collaboration and partnership
The time and other commitments involved in PPI working must be recognised in PPI collaborations [7, 9]. Flexibility when working together was key in our work and other projects found this too [10].
We were flexible in terms of how and when we worked together. Each of us has commitments outside this project to our families, colleagues and peers. This varied throughout the year, but we worked together collaboratively and in partnership to make the project work and continue. Flexibility was required to accommodate appointments, hospital stays, work commitments. Working around these unexpected and unpredictable realities of life was probably the most difficult part of this project. However, it was not so difficult that it could not be solved. We needed to be flexible and understood this from the start.
Mary, Lorraine, Joanne and Anne-Marie met online because of distance and time constraints. Initially, we agreed to meet every six weeks online, but this was flexible. Therefore, while there were mostly group meetings, there were also some individual, online meetings. Individual meetings gave an opportunity for more in-depth discussion. For transparency, meeting notes were shared among the group so everyone was aware of what was discussed.
From the beginning, Kayleigh preferred to meet on a one-to-one, in-person basis with Anne-Marie. She found it easier to communicate this way. She felt the pace would be more comfortable to share her thoughts. She finds communicating one-to-one is better than being in a group. Kayleigh and Anne-Marie agreed that meetings would be held on Mondays after 10.30am because Kayleigh attends a community hub on the other days. Further, Kayleigh preferred that meetings would take place in her home which she shares with her father. She chose this as it reduced logistical issues of arranging transport, parking and organising a support person to attend with her. By meeting in her home, Kayleigh was under less pressure to get up early on her day off, did not need to book a support person and no related costs were caused. Also, because she was not travelling to or from a meeting place she could enjoy more of her day at home with her dad. It was a good arrangement for her father too who was able to offer support if needed but not need to leave home.
Although including PPI partners in team meetings is often advocated, we must think about the person’s readiness or comfort to do this [10]. PPI partners can be heard from “behind the scenes” ([11], p. 6) and this is the way Kayleigh was ready for and comfortable to do. Anne-Marie’s bridging role was important here. She shared the updates and notes from each meeting and between each meeting. This was done by writing a list of Kayleigh’s points to be shared with the other team members and agreeing that the list was accurate before Anne-Marie left. Sometimes, depending on the communication method Kayleigh used, she would type these herself or other times, Anne-Marie would write them. Also, Anne-Marie had to share Mary, Lorraine and Joanne’s thoughts with Kayleigh. Feedback from the group meetings was shared with Kayleigh at the next meeting. This way of working showed our respect for and trust in each other. Transparency was essential when we were working like this. This is the next principle we will discuss.
Transparency
Transparency is about clear, open and two-way communication between the team so we are all clear about the aims, roles and research process [7].
We first met to discuss applying for PPI Ignite @UCC Seed Funding Scheme. We came up with ideas about what we could do. Our very first chat was about what research involves, what happens if our funding application is successful or not. This was important so we all understood different things that could happen. Although researchers understand research, sometimes it might be new to PPI partners. This can make PPI contributors feel uncertain or anxious or overwhelmed by the role [12]. Transparency about expectations is an important part of sustainable PPI working [13]. This chat was important, so we all understood and knew what to expect in research generally and our project specifically.
Once we had this shared understanding, we were able to have a frank discussion about what each of us could bring to the project. We spoke about what experience and knowledge we would bring. For example, Kayleigh was very clear that she wanted to show that people who use different ways to communicate can be part of research teams. It was also important to her that people who might not communicate in typical ways have their experiences included in PPI research. Mary and Lorraine wanted to use their experiences as parents of adults with profound intellectual disability to highlight research priorities for their support and care. Each had different levels of experience with research projects. Joanne brought her experience of facilitating PPI partnerships and working with family carers to the project. Anne-Marie is an intellectual disability nurse and academic. She brought these experiences and research expertise but recognised that she had no experience as a family carer. We talked about how much time would be needed and the need for flexibility. It was important to be clear about this practical part of PPI working. It helped us understand what was expected of us. We agreed to meet every 6 weeks to identify what we would research about. Leaving time between meetings and knowing what to expect gave us time to think about what we want to discuss.
Empowerment & power sharing
Empowerment and power sharing is about including PPI partners as soon as possible. This is where we started. We started with the PPI partnership so we have time to decide our research goal, develop a research plan and think about how we can work together in a way that suits us. As a group of three PPI partners, a research officer and researcher, we discussed our priorities as a person who uses alternative communication methods, as parents of adult children with profound intellectual disability, as a research officer and a researcher.
Now that we identified our research priority around our different roles in decision making, we will invite more people we need to join our team so we can apply for a grant and do the research. Starting with PPI meant our goals as people needing the research are heard. PPI partners are needed through all the stages of research and should not be an add on to a project [14]. We think this approach helped us to be clearer about our research goal. It reduced the risk of power imbalance.
Power imbalance on a team is when some people have more say than others. Power imbalance in PPI work is often discussed [15, 16, 4]. It might happen because of attitudes about people’s knowledge; or because people might think that knowledge from experience is not as important as professional knowledge [15, 17]. We think this needs to be carefully thought about in research projects. People should not be invited to be PPI partners just to have PPI partners. They should be part of the team because they bring knowledge that is needed. In this project, everyone’s knowledge was essential. We started with PPI partners and identified their goals first. We will continue to work this way.
Equity and inclusion
A real PPI partnership values people’s different opinions, experiences, abilities, backgrounds and expertise. Bringing this together gives PPI research its value, power and relevance [18, 19]. However, sometimes researchers find it difficult to do PPI research because of limited time to create partnerships and not enough money being available [12, 20, 17]. The importance of seed funding for projects must be recognised and such supports need to be available. This seed funding programme provided us with the time, space and funding to work together.
Our discussion about empowerment and power-sharing shows some of the ways we were equitable and inclusive. The way we wrote this paper shows equity and inclusion too. We agreed a plan for the paper and the points we wanted to make. We included everyone’s experiences whether similar or different. We divided up the work according to our abilities. Anne-Marie drafted a paper based on what we agreed. She knew how to find what other people wrote about our points. She could add this to the paper. We all read the draft. Then we made suggestions or comments for parts to be included, removed or changed. The paper is written in everyday language so everyone could be part of this process. We hope that writing this paper this way makes it accessible to anyone interested in doing PPI research.
Discussion
We think the values and principles for PPI working that we wrote about in this paper are important so that PPI partners feel welcome and part of research. Including PPI partners from the beginning is a good way to identify research goals. It means that the information or knowledge people need is found. It will be more likely to help people.
Our work together shows how the PPI Ignite Network Values and Principles (2022) can be put into practice in real life. It shows that PPI work can be done with people with intellectual disability and their family members. We hope it will encourage more PPI research and be useful to people thinking about doing it.
We have some ideas or recommendations for people who are planning PPI research.
Start the project with PPI partners. It is a good way of making sure the work you do will matter to the people who need it. If too many people are involved, there might be too many opinions about what work should be done or what the research plan should be. If a researcher wants to do work that will matter to a particular group of people, they must ask that group what should be done. There can be more discussion at a later point about how to do the project.
A PPI research project must be guided by values as we have shown in this paper. When we are guided by these values team working and partnerships are more likely to be successful. If the values discussed in this paper are not shown, people will probably feel excluded, disrespected and not want to work together.
Have a person on the research team whose job is to make sure the PPI part of a project is working. This would be another support for PPI partners to make sure they are heard and part of the project. If a PPI partner cannot come to a meeting, they might be able to meet with this person at a time that does suit. Taking this approach will allow for the flexibility needed by PPI partners who cannot reliably commit to regular meetings or tasks. Their voices and input will still be included if a life or health event means their participation will vary.
Protect time in team meetings for PPI partners to share their opinions. Sometimes it is difficult to join a meeting with people who are professionals or experts in a topic. Protecting time will build in a space for their opinion to be shared and heard.
Conclusions
We think that by taking this time to plan ways of working together, we have a PPI partnership that will be able to work together in the future. We have a research goal and idea so we will be ready for funding opportunities that come up. We now understand research better. We have partnership built on values and principles that are important for true partnership working.
We would like to see more people with intellectual disability and their families involved in PPI research. We hope that writing this paper in everyday language explains what is involved in being a PPI partner. It might remove some barriers and create an interest in becoming involved. We hope we have demonstrated PPI-POWER.
Acknowledgements
We would like to thank PPI Ignite @ UCC Seed Funding Scheme for their generous funding and Family Carers Ireland for their valuable contributions to the study.
Author contributions
AMM co-ordinated the development and design of this project and submission to the funding programme supported by all team members. AMM led in the writing of the publication with all authors reviewing and providing feedback on drafts and the final manuscript.
Funding
Funding provided by the PPI Ignite @ UCC Seed Funding Programme.
Data availability
No datasets were generated or analysed during the current study.
Declarations
Ethics approval and consent to participate
Ethical approval for this project was granted by University College Cork Social Research Ethics Committee (log no.: 2024-001).
Consent for publication
The authors retain the right to publish their PPI work.
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
No datasets were generated or analysed during the current study.