Collaboration between doctoral researchers and patient research partners: reflections and considerations

Background

Over time, patient and public involvement (PPI) in co-creating and contributing to health services development, research and innovation has substantially increased to become expected good practice (Holmes et al., 2019). There is also mounting evidence that increased PPI could improve research usefulness and reduce power imbalances that often leave patients’ voices unheard (Ocloo and Matthews, 2016). Increased PPI can also add significant practical value to studies, as those with patient partner involvement are more likely to recruit to target, retain participants and identify meaningful results (Ennis and Wykes, 2013).

Working alongside patients in health research can entail a range of activities, durations and purposes depending on the project aims, patient strengths and interests, and other engagement ongoing with the community. However, a key principle of PPI is active dialogue where professionals and patients are equal partners (Janamian et al., 2016). It is also vital to consider and tackle potential barriers and challenges to PPI, particularly when these disproportionately impact a patient partner, such as transportation costs, time and well-being.

Research doctorates such as PhDs are typically conducted over several years, and are a form of research apprenticeship. Universities and postgraduate schools require students to take ownership over the direction and design of their research. Students are supported by a supervisor or team of supervisors selected for the specific skills they bring to the project, such as methodology or subject expertise. A patient partner brings equally important expertise in their experience of living with the condition being studied. While it is important that the doctoral student retains ownership of the project in comparison to the other members of the supervisory team, these boundaries are often different with professional supervisors, who see the research in a broad professional context, compared to patient partners, who share personal experience.

Tokenism is a factor that should be addressed from the outset to allow the relationship between researcher and patient partner to develop along productive and collaborative lines. Tokenism can occur when professionals include patient partners, but the patient partners have very little opportunity to influence the process meaningfully. This can contribute to superficial and surface-level patient involvement, which gives the appearance of collaboration, but does not share power and influence with patient partners. Finding a suitable balance between avoiding tokenistic PPI and ownership of the doctoral project is particularly challenging. Other case studies have reported the experience of incorporating PPI into doctoral research, but the extent of the PPI and the students’ experiences have varied (Coupe and Mathieson, 2019; Tomlinson et al., 2019; Dawson et al., 2020). It is clear that PPI in doctoral research does not have a single ‘one size fits all’ model, and additional case studies consider other ways in which patient partners can contribute to doctoral research.

This paper presents a worked example of PPI during doctoral research from the perspectives of a doctoral student and a patient research partner. It discusses the experiences and reflections that have led to learning and mutual benefits for both the doctoral student and the patient research partner. This piece is co-written, so that both authors can reflect on their perspectives.

Context

The project was part of a PhD focused on self-management and patient activation (how able and willing someone is to take an active role in managing their health) (Jones, 2020). Beth was part of the Rheumatology Research Team and located in the Bristol Royal Infirmary, where the rheumatology team have a long history of collaborating with patients in clinical and research contexts (Hewlett et al., 2006). PPI within academic rheumatology also has a strong documented history, particularly around developing outcome measures and the greater focus on fatigue in both research and clinical care (Goel, 2020; De Wit and Adebajo, 2019).

In Beth’s department, there is typically at least one patient partner on each project to provide the patient perspective and to contribute to the design and running of research. These patient partners are often recruited through discussion with health-care professionals in clinics, although efforts are in progress to recruit patient partners through other avenues. The team try to ensure that the patient partner and project are good fits for each other in terms of health experiences (for example, ensuring that a patient partner is recruited that has a specific health condition) and experiences relevant to the study (for example, patient partners on a study developing a fatigue intervention will have experienced fatigue as one of their symptoms). Patient partners are also matched according to the amount of time they would like to commit, and the interest they have in the topic and methods. The team provide a range of engagement opportunities for patient partners at a range of levels of involvement. This allows patient partners to be able to commit to an opportunity and project that best suits them.

For this project, Andrew was the sole patient partner, and he was attached to the project before Beth was appointed as the student. He was recruited for this project in particular because of his experience of actively self-managing a rheumatic condition. This PhD project had a supervisory team of four members, including Andrew. The other members were:

• an associate professor in rheumatology and self-management with expertise in mixed-methods self-management in rheumatology, who acted as director of studies (lead PhD supervisor)

• a professor of rheumatology nursing with expertise in the clinical care of inflammatory arthritis and research incorporating patients’ perspectives in rheumatology

• a professor of appearance and health psychology with expertise and interests in interventions that focus on the psychosocial impact of long-term conditions.

The project began in November 2016 and Beth submitted her PhD thesis in late 2019.

Expectations

Beth began her PhD with some experience of working collaboratively with patients clinically, but she had not worked with a patient partner in research before. She was hoping for a patient partner who was willing to participate in all aspects of the research, including reviewing the thesis and disseminations to help it reflect the patient voice. Given that the thesis topic was very focused on patient experience, it would not have been appropriate to progress without multiple sources of patient involvement. Consequently, a patient partner involved for the duration of the project was one of the strands of PPI (among other engagement with patient groups). In some ways, there was a shared experience between Beth and Andrew of learning about patient partner involvement in research together, as this was the first substantial and long-term experience of collaborating in this way in research for both parties. This offered an opportunity to learn together. This collaboration met Beth’s expectations and hopes for a patient partner working relationship, and Andrew was very involved in the process.

Andrew came from a teaching background, and he took up his role as a patient partner following a change in health as a way of using his skills to support the learning process. This was balanced by a personal desire to see his medical condition in a more positive light. He was enthusiastic to reflect on, and share, his experience as a patient. This was his first experience of being a patient partner, and of working in a patient partner PhD supervisor capacity.

Andrew was also keen that his involvement avoided tokenism, in that he wanted to be more than ‘a box ticked’. He wanted to play a supportive role and respond to the development of the research and researcher, rather than bringing any preconceived agenda to the project. His expectations were met in the supportive role he played in the project. Andrew played many roles throughout, but he particularly saw himself as a ‘critical friend’ patient partner (Barker et al., 2020). Other members of Beth’s supervisory team played different roles in their capacity on the team, due to their supervisory, pastoral and academic responsibilities. They brought specific responsibilities and academic expertise, and all had experience of supervising multiple doctoral students to the completion of their degree. Andrew’s role did not have any set expectations in terms of his collaboration style, and consequently he made use of the critical friend role above others.

A crucial part of Andrew’s approach was recognising that his voice did not reflect or represent all rheumatology patients everywhere, and that he was just reflecting his own experience, rather than being a representative of ‘the patient voice’ in general, because others may have different perspectives and opinions. As the use of a single patient partner has been criticised previously, and they cannot and should not speak for all patients (Gilbert, 2019), Andrew looked to develop a wider understanding of patient perspectives, and he discussed aspects of the broad topic with some of his fellow patients at his local patient group. This contributed to an additional layer of PPI that Andrew used when reflecting on aspects of the project to mitigate the limitations of a single patient partner. While we both acknowledge the risk of having just one patient partner attached to the project, we worked to reduce this, with ongoing discussions with this patient group and member checking of analysis built into one of the studies in the project.

Navigating ‘the dance’ of academic research: finding balance and ownership

Andrew’s involvement in the project spanned formal PhD-related events and more informal, ongoing contact about the project. He attended all supervisory team meetings to participate in discussion, contribute questions around the design of studies, or review the overall findings and implications of data collection. He reviewed documents such as protocols, ethics applications, and conference abstracts or other dissemination opportunities. Andrew contributed to piloting qualitative interviews and a quantitative survey to provide feedback prior to data collection. This feedback went beyond commenting on practicalities and presentation of the data collection, to discussing the topics covered and outcomes targeted. He also reviewed all outputs of the PhD, including the thesis itself, and he participated in a mock viva (a practice version of a final examination for a PhD, where the student discusses and defends their work).

Beth and Andrew also regularly exchanged emails sharing literature. This initially began with Beth sending plain language summaries of aspects of the field and key debates and issues for Andrew to understand the context around the project. This process was also beneficial for Beth in her experience of getting to know the research field and being able to identify and synthesise key literature in accessible summaries. This progressed, at Andrew’s request, to the sharing of journal articles relevant to the project. Finally, this became a two-way process, and Andrew sent reading he had come across to Beth for consideration. Both should acknowledge that Andrew’s abilities, skills and engagement facilitated easier collaboration. Andrew had the ability to read academic papers and understand much of the terminology, and he was confident enough to ask questions when there were things he did not know or understand. This meant he was comfortable engaging in the research process. Other patient partners may require more training or more adaptation to ensure that they are comfortable collaborating if they do not have these skills. Lacking these skills might also be a barrier to people feeling able to become patient partners. Andrew’s personal experience of teaching professionally, as well as conducting research of his own during further professional study, also facilitated his ability and readiness to become an active and engaged partner in the process.

Because of the nature of doctoral research, the case study presented here is one where the partnership cannot be equal. As a doctoral researcher, being able to own and defend the decisions taken throughout the research is vital. Therefore, Andrew took on more of a ‘patient supervisor’ role, and he acted as a patient partner and one of the supervisory team. He contributed to the direction and focus of the work in the same way as other members of the supervisory team. While Beth made the decisions, Andrew played a vital role in the steering of the project.

Andrew has since come to reflect on his belief that his role was to serve the research and Beth’s PhD completion. He believes that the success of the partnership required dedication and time commitment from Beth to incorporate PPI into her working practice. It remains his belief that while he had everything to gain, Beth had more to lose had the collaborative relationship become challenging.

This collaboration evolved for both organically as the project progressed, following a meeting at the beginning of the PhD to establish the type of involvement both were hoping for, expectations and working practice preferences. This was informally reviewed regularly, during one-to-one meetings.

This did not mean that both always agreed on all points related to the project. Reviewing the findings of one study saw Beth and Andrew having different interpretations of why a particular subgroup of participants may feel a specific patient questionnaire comprehensively captured their self-management behaviours. This difference in perspective was noted in Andrew’s comments on the thesis document initially, and Beth raised it as a discussion point at their next meeting. This allowed a negotiated conversation to discuss both perspectives, and for Beth to consider Andrew’s opinion. Ultimately, while his perspective on this was not noted in the PhD thesis for brevity, it has been incorporated into talks when Andrew has co-presented with Beth. This process ensured that Andrew’s voice was heard and his perspectives considered, but it also gave Beth the opportunity to determine what did not fit with the flow and word limits of chapters, and to come to a compromise with Andrew.

Practical considerations

As this was a longer-term involvement opportunity, Beth incorporated specific practical strategies to ensure Andrew’s well-being wherever possible. These were critical, and while they will not be universal for all patient partners, they may be transferable to other circumstances.

Adding value and feeling valued

Collaborating together brought value in multiple layers. This includes the value of Andrew’s involvement in the PhD project, and the additional value this added for the project impact on the wider patient community. We both have individual reflections on this value.

Discussion

A key element of this positive working relationship is the openness and thoughtfulness on both sides to make it productive without being exploitative. While neither Beth nor Andrew received formal training to prepare for this collaboration, both feel that an induction for early career researchers and patient partners could set a positive tone for others in this situation. This might cover good practice, expectations from both sides, and formalising the preferences and requirements for communication and the patient partner role. Additionally, considering and determining how either researchers or patient partners can access support if there are challenges or communication difficulties (for example, via supervisors or a specific third-party liaison) would add support, should issues arise. This was not the case for this project, and together we wonder if this is due to a good personality fit, above and beyond efforts we made to communicate together well. Beth’s PhD journey was also comparatively smooth, with few difficult life events and no need to pause the process, and this may have helped reduce the likelihood of difficulties.

We encountered very few challenges throughout the process, and this is something we explored during the process of drafting this paper. This may in part be due to a willingness to share power, an open-ended form of collaboration that was flexible to suit Andrew’s needs, and his existing skills that made him more confident engaging in this process. We made pre-emptive efforts to avoid other challenges that can contribute to difficulties when working with patient partners, such as inaccessible locations and unclear expectations of time or work, through ongoing discussion. Meetings and workload were planned around Andrew’s preferences and needs, as discussed above. Beth’s prior experience of working with patient partners, and the potential challenges of this, may have helped to inform this ongoing negotiation and to pre-empt potential difficulties.

It is important to acknowledge that due to Andrew’s professional background, he had some pre-existing insight into the university system that not all patient partners have. Developing accessible summary materials for patient partners to cover this would be useful, particularly for those interested in joining a PhD project. These could introduce the long-term nature of the involvement and some of the relevant aspects of ‘the dance’ which they may benefit from knowing in advance. Formalising the process of formative and summative evaluation of the collaboration can strengthen learning and ensure that future experiences continue to become more positive over time (De Wit et al., 2011).

We also acknowledge that barriers to becoming a patient partner are higher for people whose voices are often not heard in research. We recognise the value of both traditional literacy and digital literacy, particularly in the time of COVID-19, when much more PPI will be conducted virtually. We hope this case study provides practical suggestions for working effectively with patient partners throughout the doctoral process, and offers suggestions for formalising the process to support both parties.

Declarations and conflicts of interest