Who was involved?
Table 1 shows a breakdown of how intended involvement translated into actual involvement in practice at different stages of the research project. It also illustrates training offered to the PPI contributors and impact at different stages of the research cycle (Figure 1).
Pre-funding:When funding opportunity for the PhD was advertised, the proposal was written with advice sought from a PPI contributor who was recommended by the co-author (SG). During the initial phase, the ideas for this research proposal were discussed, and feedback was sought on the research proposal. This PPI contributor suggested that efforts should be made to increase the diversity of PPI contributors involved in this study; therefore, their involvement was limited to the pre-funding stage.
Post-funding- Recruitment of PPI contributors:Once funding was received, two new PPI contributors (XY and AR), who were part of the Greater Manchester PSTRC Research User Group (RUG) were recruited to be involved in the PhD research project. Both PPI contributors were from BAME backgrounds and were interested in improving care, access and support for BAME groups. The first PPI contributor (XY) was involved with various groups and forums but had no experience of PPI in a research setting. The second PPI contributor (AR) is from a BAME background and was involved in different PPI groups, with a keen interest in making PPI in health services research more inclusive, i.e. widening the types of people who become involved. The former (XY) PPI contributor was only involved in reviewing the systematic review protocol (see Table 1) as they left the Greater Manchester PSTRC RUG due to family commitments during the second year of the doctoral training. A colleague helped identify a new PPI contributor (VP) to replace this individual; VP had no prior experience of PPI. She is from a BAME background with interest in the health of BAME groups and keen to help by getting involved in this research study. Both AR and VP were involved throughout the project with VP being involved post-systematic review.
Initial PPI meeting and practical considerations
We arranged an initial face-to-face meeting with the two PPI contributors (AR and VP) individually (between September 2013 and February 2014). We discussed the study aims, expectations of the doctoral researcher and supervisory team, PPI contributors’ expectations regarding their involvement, preferred methods and frequency of communication and meetings, and terms of reference including ground rules (based on the Greater Manchester PSTRC RUG terms of reference).
Researchers’ expectations regarding PPI involvement in doctoral research were presented in the form of a pre-determined list of potential involvement opportunities. These were developed by the doctoral researcher and the supervisory team to involve the PPI contributors throughout the research process (see Table 1). SD discussed potential involvement opportunities, including explaining the different components of the PhD and the research process to the PPI contributors. They had the opportunity to be involved in all or any of the research processes discussed below, allowing for flexibility. Accessibility of the venue for meetings was also discussed. As the PPI contributors were happy to meet at The University of Manchester, efforts were made to hold meetings in a different location that was more accessible within the campus. Therefore, meetings were held in different locations within the University campus depending on availability of rooms.
All meetings (n = 16) were planned 3–4 weeks in advance and were held on a day and time that was convenient for the PPI contributors during four years at a University location. Except for the initial meeting, where one of the supervisors (SG) was present to support the researcher (SD), all the other meetings involved only the researcher and the PPI contributors. Additionally, contact was maintained in-between via e-mails and/or telephone conversations on a regular (once a month/every other month) basis to provide a progress update and seek input. All documents that required input from the contributors were sent primarily via e-mail, and where the document was lengthy, a hard copy was also posted.
PPI contributors were reimbursed for their time and fees (£20.00 per hour) for face-to-face meetings, in line with the Greater Manchester PSTRC payment policy, which adheres to NIHR INVOLVE recommendations. PPI contributors were also reimbursed for travel and any related costs (i.e. carer allowance, childcare). Training needs were discussed, and it was agreed that PPI contributors would receive training by the doctoral researcher where appropriate and possible. Educational sessions on different topics such as systematic reviews, qualitative research and facilitation were provided by SD. During the duration of the project, SD also had the opportunity to attend a variety of PPI training offered by Greater Manchester PSTRC, locally and nationally by other organisations. This included introduction to PPI, PPI in evidence synthesis, principles and applications of PPI, sharing practice and innovation for PPI in research.
Involvement in the systematic review
Three other PPI contributors in addition to AR and XY were involved in reviewing the systematic review protocol. These three PPI contributors had considerable experience of PPI, and two of the three had some experience of being involved in systematic reviews. The decision to involve additional PPI contributors at this stage was to allow the opportunity to embed PPI in the development of the systematic review protocol. Involving these three PPI contributors led to adding two new terms (steering group and patient advocate) to the search strategy and consider how minority ethnic groups were defined in the literature.21
Involvement in other stages of the doctoral research project
Except for the systematic review, where the PPI’s contributors’ involvement was limited to reviewing the protocol,21 both AR and VP were involved in all stages of the research process (see figure 1) including contributing to the lay summary, which formed part of the doctoral thesis.
The research stages involved the development of the study protocol, University ethics application form, study materials, data management and analyses and research article writing. Study materials included information sheets, consent forms, topic guides for interviews and advertisement to recruit participants. The researcher (SD) provided AR and VP with a short educational session on processes and steps involved in data management and analysing qualitative data. A few (n = 6) anonymised transcripts from the interviews with South Asian participants (n = 27), and interviews with researchers (n = 27) were shared to help PPI contributors gain a better understanding around processes involved in analysing the data and also to elicit their views regarding the themes that emerged from the data. Furthermore, preliminary findings were also presented to gain feedback regarding any other topics that might require further discussion when interviewing study participants.
Finally, a ½ a day dissemination event was held at the Manchester Museum on The University of Manchester campus in October 2016. When participants consented to take part in the qualitative studies, they had the option to provide their contact details if they wanted a copy of the study findings. Study participants (South Asian patients/members of the public and researchers) were invited to attend this event. Twenty-two of the Fifty-four participants who participated in the interview study as a part of the wider doctoral research attended this event with the majority being lay participants (n = 19) and 3 being researchers. This event was organised in collaboration with AR and VP, who helped plan the event and, on the day, facilitated discussions with study participants. While the purpose of this event was to share the study findings, the researcher also used this as an opportunity to do member checking, i.e. taking findings back to the study participants for their confirmation that the researcher’s interpretation of the data accurately reflects participants’ intended meaning.22
SD met with AR and VP before this event to discuss the processes involved in facilitating this meeting and offer any additional support, they might require on the day along with an opportunity for them to clarify any concerns they might have. Based on their suggestion to accommodate cultural considerations for the South Asian participants (female, Pakistan origin), a female PhD student proficient in Hindi/Urdu was recruited to facilitate the discussions. Additionally, three other PhD students were recruited, and support was provided to enable facilitation of discussions with the participants.
PPI contributors’ reflections of being involved
Angela Ruddock- Public Contributor
I was born in London and moved to Manchester in 1984, following completion of university degree in Microbiology, and worked in education administration and then in Human Resources within the higher education sector. Then I joined the NHS, when after 35 years’ service, I retired in 2009. I became interested in clinical research following the pursuit of a personal interest in diabetes, which is prevalent in my family and after following the progress of the treatment of 2 close relatives suffering from Diabetes and late on dementia.
I became a member of the Salford University Hospital NHS Foundation Trust and joined a PPI group of the North West Diabetes Research Group based in Salford in 2010. I then became aware of the PRIMER group (Primary care Research In Manchester Engagement Resource) based in the Centre for Primary Care at The University of Manchester and funded originally by the NIHR School for Primary Care Research. This forum was particularly attractive to me because of the wider aspects covered within it, not just diabetes but also other chronic illnesses affecting the elderly and other often vulnerable groups. I have since been involved, in a number of lay public groups, by providing feedback and commentary on a number of research projects. One of the events I attended during this time was a Hack Day where researchers meet up with members of the public and pull together ideas for research projects. When I joined these groups from 2010, I was particularly interested in the fact that there were very few, if any, public contributors from black and minority ethnic (BAME) communities. Very often I was the only such member at any of the meetings.
I was introduced to SD, who at that stage had little research experience, at this Hack event, and I discovered that she was doing a research project on this very subject. I was very pleased to be invited to be involved in her PhD project. SD began setting-up a PPI group comprising of myself and 2 other public contributors, one experienced in public involvement in several NHS projects and who had particular carer responsibilities and therefore experience, and one with no previous experience of PPI, although with lived experience as a parent and partner with a family. Shoba made a point of referring to us from a patient/public perspective as well as liaising with researchers (her supervisory team) experienced in involving members of the public.
Shoba shared with us from the outset her aims and objectives, including the definitions of public involvement and engagement, literature existing at that time. There was very little, if any, research relating to the lack of BAME public contributors. We provided input, by comments and our own experiences at different stages of the research process which I feel made Shoba re-appraise approaches to advertising participant opportunities, and which mediums could be used for participant recruitment.
We trialed practice interviews with Shoba so that she was able to use Plain English which would be clearly and easily understood (see Table 1). We also suggested how interpreters could be used particularly when targeting older women from South Asian communities. We felt it was important for Shoba to feel confident while interviewing and consider how best to explain the concept of PPI to lay participants, as most of them would not be familiar with it. We also commented on ways people could be attracted to attend, for instance through community associations and venues where particularly women will feel comfortable meeting and confident in being able to discuss personal issues.
Shoba then met with us to discuss some of the anonymised interviews and the initial findings, which we found not only interesting but, in many cases, resonated with our own personal experiences. It was fascinating that our responses could be identified as common issues for different minority groups, including eastern European, and groups marginalised through mental health issues, homelessness and socio-economic factors.
Following discussions, we suggested that Shoba compile a Plain English paper to present to the PRIMER Group based in the Centre for Primary Care, The University of Manchester. This session and discussions with them also enabled Shoba to validate the findings to some extent and think about other topic areas that required further attention. Both I and one other public contributor Veena also supported Shoba by acting as facilitators for the dissemination event at the end of the data analysis phase, where both lay and researcher participants were invited to attend this 1/2 a day event. The study findings were discussed to obtain wider views; this helped identify if the findings resonated with the views of participants as well as reflected on the recommendations.
This was a 4-year project, and it made me appreciate how long these studies take. We were fortunate that Shoba ensured that we were regularly updated and informed of progress, so we did not feel that we were out of the loop. One final point to add is that care was taken to ensure that we were compensated for our time in reviewing the documentation as well as the physical arrangements for meetings. We were also advised of the progress leading to the award of the doctorate this year.
Veena Parmar- Public contributor
I am a second-generation Indian-born in Nairobi and educated in the British colonial system. My family is a blend of Anglo-Indian Portuguese culture. It’s great when we have family gatherings to exchange our various views. Since being married, I have lived in and around Manchester. I had only heard about people who were participating in clinical trials. I was persuaded to get involved by Shoba in her research. I was reluctant at first, but Shoba really encouraged me to come and meet her and the other PPI partner. At the meeting I found the topic interesting and agreed to continue my involvement. Between Angela and myself gave pointers to Shoba about how to advertise and recruit people via Asian shops, ethnic centres and religious meeting places. Notices were put in various public places for ethnic minorities (Table 1). I also offered suggestions about how to work through community leaders and how to approach women in socially conservative communities.
She then met with the community group gatekeeper to ask for permission to chat about her research to the community centre users i.e. South Asian participants. With the gatekeepers’ permission, it was possible to speak to people during their group activity sessions. I also took part in a mock interview to test the interview questions before Shoba recruited study participants. She asked for our feedback and it was then incorporated, this process also helped Shoba to gain confidence in interviewing study participants. There were lots of obstacles to overcome the cultural boundaries. For example, there were lots of shy women who were also worried about anonymity and confidentiality of information shared, therefore did not want Shoba to record their interviews. In such situations, she explained the process of anonymity and confidentiality and its implications and took notes instead to enable their participation and to make them feel comfortable and gain their confidence. Their interviews were done with utmost sensitivity.
I found this study research that Shoba carried out very interesting. Shoba took us through the process of analysing interview data, and we read some anonymous transcripts and notes and discussed the findings in relation to our experiences as well. I enjoyed reading case studies, facilitating the event and the whole process; we had dynamic meetings where we bounced off ideas and we often overstayed our meetings. I would recommend anyone to get involved in research. My advice to anyone who wishes to get involved would be to ensure that you understand what you are getting yourself in to and ask questions. Keep an open mind and you will learn a lot.
Researcher’s reflections on involving PPI contributors and impact
While existing literature suggests that PPI can often be perceived as a time-consuming exercise and resource-intensive, planning and involving PPI contributors from the outset enabled the researcher to plan a budget for PPI covering the research cycle. Building and maintaining trust and relationships were crucial to have sustained ongoing involvement and developing a positive working relationship. Understanding PPI contributors’ motivations for involvement and their expectations helped manage expectations from the outset as they enabled the development of a close partnership between the researcher and the PPI contributors. The researcher (SD) planned involvement in this doctoral research from the outset. When planning PPI for this research project, discussions with supervisors and co-authors led to an agreement that involvement should be less categorical (e.g. consultation, collaboration) and more flexible approaches should be adapted. For example, SD intended to involve the PPI contributors throughout the systematic review phase. Still, in practice, involvement was limited to the development of the protocol as PPI contributors did not feel that they had the skills to be involved further in the review. Therefore, involvement in this project was fluid and enabled flexibility throughout the research process with PPI contributors having the option to choose the extent of involvement and be involved in a way that was meaningful for them as reflected by the two PPI contributors (AR and VP). Several factors contributed to the decision-making regarding the extent of PPI including the availability of resources, purpose and relevance of PPI in the context of this project and PPI contributors’ availability and interest in the extent of involvement. These factors also contributed to the use of traditional types of involvement when considering the involvement of BAME-PPI contributors.
Overall involving PPI contributors has been extremely valuable and has led to a better and more meaningful project. Involving a PPI contributor when developing the proposal for the doctoral research project was invaluable as it validated the timely need to explore this specific topic and provided direction when developing the research question for the doctoral research proposal. Working with PPI contributors throughout the project allowed for identifying some problems (e.g. redefining INVOLVE’s definition) which otherwise would have been unanticipated and develop solutions to overcome these barriers, confirm and validate that right decision have been made and increasing researchers’ confidence in those decisions. AR and VP provided feedback regarding the recruitment of South Asian participants, which enabled the researcher to reconsider the approaches to advertising participation opportunities and use diverse approaches for participant recruitment. For example, information sheet and consent form were translated to Urdu and Gujarati by an external agency pre-vetted by the University as this was the commonly spoken language amongst South Asian community groups in the local area. Based on their suggestion, a poster was taken to advertise in a local Asian supermarket. This opportunity helped in identifying an individual who attended a local community group and was an active member of the community. They initially volunteered to participate in the study and then supported SD to gain access to the local community groups. As the community group members had an established relationship with this individual, it enabled the researcher to engage with them, which otherwise would not have been possible. Furthermore, PPI contributors advised the researcher to recruit a few participants and identify additional participants through them (chain referral sampling). Chain referral sampling was used as a complementary approach in addition to purposeful sampling, and it was immensely helpful as trust was already established amongst people belonging to the same community.
Involving PPI contributors had an impact on research quality and relevance. For example, both the PPI contributors also participated in developing and testing the interview schedule as participants and changes in the form of wording, ordering of questions with made to the interview schedule. Together we also refined INVOLVE’s definition of PPI and used some examples to help explain what PPI is to the lay participants. For example, we defined involvement as working with members of the research team and examples to explain ways to get involved included, feedback obtained in developing the patient-facing materials, interview schedule used to interview participants. This was important because most of the participants in the study were not aware of PPI opportunities and finding a way to explain this concept was important.
The researcher and the PPI contributors were involved in a range of engagement activities during this doctoral research. This included advertising research participation opportunities, dissemination event, sharing their experiences of PPI via the NIHR GM PSTRC blog, Primary Care Research in Manchester Engagement Resource (PRIMER) at 10 event, plain English summary for Greater Manchester PSTRC website and Greater Manchester PSTRC dissemination event. A few lay participants since taking part in this study and those who attended the dissemination event have since become involved as PPI contributors in other doctoral research projects.
Involving two PPI contributors rather than setting up an advisory group facilitated the development of a good relationship with PPI contributors where they were ‘critical friends’ and encouraged an open and honest conversation. Their involvement enabled careful consideration of a variety of issues without making assumptions, facilitated learning and filled gaps in the researcher’s experiential knowledge. For example, PPI contributors’ experiential knowledge allowed the researcher to consider alternative approaches to advertising participation opportunities (e.g. a local community supermarket) and navigate cultural barriers. For example, providing interpreters during the dissemination event encouraged attendance of female participants of Pakistani origin and facilitate engagement. Discussing study findings was stimulating as it allowed the researcher to learn about their life experiences and how some of the findings resonated with them. It also led the researcher to appreciate that while some of the issues were cultural others were broadly generalisable.
A range of values and principles to involvement was adopted when undertaking this doctoral research. This can be mapped onto the values and principles framework of good practice for PPI in research developed by INVOLVE23. Values include respect, support, transparency, responsiveness, fairness of opportunity, and accountability. Table 2 highlights some examples from the doctoral research mapping onto these values. These values were crucial as they facilitated involvement in this research and also supported the continued involvement of the PPI contributors, and led to developing and fostering a positive relationship.