Guidance for researchers

Patient and public involvement in research can take many forms, and the National Institute for Health Research (NIHR) (2021) provides comprehensive guidance for researchers on how to do this. NIHR (2021) classifies involvement using three definitions of relevance to this article:

The UK Standards for Public Involvement (UK Public Involvement Standards Development Partnership (UKPISDP) 2019) is a further resource, structured around six domains: inclusive opportunities, working together, support and learning, governance, communications, and impact. UKPISDP (2020) provides examples of how researchers across the UK have integrated the standards into their studies.

However, many different frameworks exist to support involvement, and researchers will need to tailor guidance to suit their own circumstances (Greenhalgh et al 2019).

Benefits to researchers

A researcher’s approach to patient and public involvement will depend on several factors, including funding, time available and experience. The influence of these factors will be felt keenly for nurses undertaking a PhD, but we believe it is important for this skill to be acquired at a formative stage in a researcher’s career. Patient and public involvement comes with unique challenges, but it can also be an enriching experience for researchers and contributors (Dawson et al 2020).

Furthermore, we would emphasise that the focus placed on avoiding ‘tokenism’ (Ocloo and Matthews 2016) means involving patients and the public in nursing PhD projects is an important part of training and can aid students in learning how to avoid it (Troya et al 2019).

Setting such standards at the outset of a research career should be a statement of intent, signalling a commitment to meaningful engagement, which will grow with experience.

The research group

The palliative, end of life and bereavement care studies group at the University of Glasgow’s School of Medicine, Dentistry and Nursing comprises a team of nurses from a wide range of clinical backgrounds and several countries. Table 1 provides an overview of each researcher’s PhD thesis topic, and the way patients and the public were involved in the design and conduct of the research.

Table 1.

Project summaries

Each researcher worked independently, with the support of their academic supervisors. Some projects were independently instigated by the researcher, others were undertaken as part of a funded studentship or scholarship. All projects aligned with the group’s goal of improving the way nurses care for people with life-limiting and palliative conditions and the bereaved friends and relatives of such people.

Who should you involve?

PhD programmes may comprise several phases, with people with different characteristics recruited to each stage. It is therefore important that contributors can provide relevant insight for each phase. CM, MD and MS involved contributors with experience of their research topics for the duration of their PhDs; they supplemented this with short-term input from larger groups assembled to support specific phases.

CM’s research focuses on people with multimorbidity – more than two chronic conditions – and includes a study in which it was important to gain insight from people with a wide range of conditions. An 11-person group with a wide variety of chronic conditions was therefore convened by the researcher to ensure his study’s documentation and processes were accessible.

MS collected data in Turkey but she required ethical approval from institutions in Scotland and Turkey to do so. This meant that all her study documentation had to be produced in both English and Turkish, so that the committees could review them. She therefore recruited contributors in both nations to ensure the study’s English and Turkish documentation was clear and that the translated documents retained the same meaning in both languages.

How will you identify and recruit contributors?

Identifying suitable potential contributors for a study requires students to go out to the physical and online locations where potential contributors meet (NIHR 2021). This can require ad hoc as well as targeted methods. For example, a chance encounter at a digital health conference led to the involvement of a patient advocate in AF’s PhD. In contrast, MD and ST recruited contributors at a structured patient and public involvement event at their university. Both approaches yielded contributors who were enthusiastic about the research topic and patient and public involvement.

BA’s research focuses on the relationship between culture and heart failure, so he needed to recruit contributors from diverse cultural and ethnic backgrounds. Accessing tight-knit relational networks organised by ethnicity, religion or immigration status requires a physical presence to build trust. BA attended social events and spaces where people from his targeted cultural groups met. He was then able to recruit contributors by establishing rapport and integrating with these groups.

How will you keep in touch and maintain a good relationship?

If someone agrees to contribute to a nursing PhD study, they may be involved with it for several years, particularly if research is being conducted part-time alongside clinical practice. This is a significant commitment, so it is important to agree with contributors how you will communicate with them during the project and to be clear about what is expected of the contributor, and what should be expected of you, the researcher. UKPISDP (2019) emphasises the importance of working collaboratively by clearly defining roles, responsibilities, expectations and ways of working so that everyone’s contribution is valued. Core components of nursing care are working in partnership with patients, valuing their contributions and communicating effectively (Nursing and Midwifery Council (NMC) 2018); they are also skills that can be developed when doing a PhD.

Face-to-face and remote approaches both have strengths and weaknesses, but the unifying strength of our group’s projects was that we each agreed with contributors at their outsets the approaches to communication we would use throughout our research.

BA’s relationships with contributors required him to see them face-to-face, but the opposite was true for CM. CM conducted most of his research during the COVID-19 pandemic but his participants had multiple chronic conditions so many of them were self-isolating. CM therefore recruited his participants remotely and communicated with them using email, by phone or through videoconferencing. This arrangement still suited the contributors after lockdown restrictions were reduced, so CM maintained it for the rest of his project.

How will you reimburse contributors?

People who give their time to help with your research should be reimbursed. How this is done will depend on several factors, including the level of their involvement, the time they spend and whether they will incur any direct costs such as travelling expenses.

It is also important to consider the effect reimbursement may have on contributors who receive state benefits, as any payment might result in their benefits being reduced or ended. NIHR (2023) recommends developing a payment plan that explains how much contributors will be paid and how they will be paid, as well as how they can avoid it affecting their benefits, for example by declining or requesting lower payments.

We stated in our initial contacts with participants that we would give them shopping vouchers for high-street and online retailers to reimburse them for their time. We gave a contributor a £20 voucher for each hour they helped with a task, such as reviewing documentation. We reimbursed any out-of-pocket expenses promptly or paid them in advance.

Small gestures, such as going to a café and buying them tea or coffee, can help to show your appreciation for the contributor’s time in face-to-face meetings. MS had local contributors and would arrange lengthier meetings with local contributors over lunch and pay the bill.

How much will it cost?

Costs ultimately depend on the type and level of involvement required. For example, it will cost significantly less to consult with one or two contributors at the start of the research than to have a patient and public steering group for the duration of a project or to convene a focus group to co-design data collection tools.

Pizzo et al’s (2015) economic analysis of patient and public involvement considered not only its monetary costs – such as materials and expenses – but also non-monetary costs, such as the time contributors spent. The authors concluded that patient and public involvement has many benefits, but its costs are less clear.

Building costs into grant applications helps to prevent future issues with reimbursement as well as communicating to the funder that you intend to conduct research that matters to patients. However, a funded nursing PhD may not have these costs considered.

The authors of Tomlinson et al (2019) applied for a small NIHR grant to fund patient and public involvement in their PhD projects. Our group had access to a small patient and public involvement grant held by our primary supervisor. Grants for this purpose can occasionally be found – we recommend checking the websites of major funders such as the Medical Research Council and NIHR, as well as relevant charities. Supervisors may also be able to highlight internal funding opportunities. If the costs are expected to be low for individual students, applying for a small grant as a research group may be more appropriate.

How much time can you dedicate to involvement?

Coordinating involvement activities can take a lot of time and it is best to overestimate rather than underestimate how long each activity will take. Collaboration and co-production are particularly time-consuming, but even if you are only consulting patients and the public about your research it is important to give them plenty of time to think about and read any materials you have shared with them (NIHR 2021).

Initial meetings can be lengthy, as these involve establishing rapport and agreeing how to proceed. They are also important. For example, MD’s first two meetings with her primary adviser each lasted two to three hours but cemented a strong, mutually beneficial relationship that lasted throughout her project.

How much experience do you have of patient and public involvement?

There is good reason to argue that all patient and public involvement should strive towards partnership working and avoid tokenistic approaches (Ocloo and Matthews 2016). This argument is framed by the fact that such involvement often comprises consultation and occasionally collaboration in the early stages of a project, with little ongoing input from contributors (Pii et al 2019).

However, co-production requires that contributors are afforded the same ownership over decisions as the researcher (NIHR 2021). There are also ethical dimensions you must consider when embarking on this approach (Reddy and Ghosh-Jerath 2021).

PhD students should consider how much experience they and their supervisory team have in this area. The PhD study may be a nurse researcher’s first sizable research project, and attempting co-production may be overambitious. But we have demonstrated throughout our projects that there is scope to collaborate with patients and members of the public throughout a research study. For example, BA involved collaborators in the analysis of interview transcripts, MD developed themes with her contributor, and several of the group’s contributors assisted in designing tools to collect data.

Limited experience should not prevent collaboration or restrict students to tokenistic approaches. However, it is also important to be realistic about what you can achieve in your PhD – we must practise within our level of clinical competency (NMC 2018), and the same standard should apply to how we conduct research.

What do you want to achieve by involving patients and the public?

Patient and public involvement is often used to set the agenda of research (Price et al 2018), but for most nurses undertaking a PhD this will already have been agreed at the outset. It is important then to think about the reasons why you are involving patients and the public in your PhD project.

An area to consider is how engaging with contributors from a target population can help with understanding the nuances of their culture. Culture in this context is not limited to geographically close or demographically homogenous groups, but rather the shared norms and beliefs held by disparate groups with a common experience, such as living with a chronic condition (Morse 2014). Several of our group reported this benefit, although it is difficult to quantify.

Involvement may require time, funding and expertise but it can play a significant role in ensuring that a project proceeds as planned and generates findings that matter to patients. A separate project undertaken by members of our group and included as an exemplar in UK Public Involvement Standards (2020) explored palliative care for people in prison. We held patient and public involvement groups with incarcerated men and these enabled us to uncover unique challenges that would otherwise have frustrated our attempts to collect data.

Patient-friendly documentation and approaches

Contributors often helped us to make patient documentation more comprehensible, including information sheets and consent forms. Taking simple steps such as using plain language and keeping documents succinct can help, but ultimately each target population may have specific needs that can only be met if contributors are involved in producing documentation. Some of CM’s contributors faced complex barriers to communication. They helped to improve documentation and processes through measures such as producing large-text documentation, providing audio recordings of the documents being read aloud and ensuring that participants could have a witness present when providing consent.

People with cognitive impairment requested having a picture of the researcher on the documentation so they could remember who they were dealing with; this was also requested by AF’s contributors. Others who were registered blind used electronic reading software and could identify aspects of the documentation that did not work when read electronically.

MS faced the challenge of developing materials in English and Turkish that were appropriate for rural and urban populations with variable literacy. To resolve this, she recruited contributors who spoke Turkish, some of whom were bilingual or had lower literacy. The resulting documentation was more accessible to the target population. The involvement of bilingual speakers also made it possible to check that the English and Turkish study protocols and research questions were congruent.

More effective methods and better study design

Contributors could also advise on methods and the design of a study, often by refining tools designed by the researcher for collecting data. This was the case for CM, MD, AF and ST.

Contributors’ input also significantly strengthened BA’s qualitative focus group study. Difficulties accessing some cultural groups hampered initial recruitment, and when he piloted the questions to be asked during the focus groups they did not generate the depth of data anticipated.

Contributors supported the research team by acting as ‘cultural brokers’. Discussions with the contributors led BA and the research team to rephrase the types of questions he was asking, so that he was approaching the topic of palliative and end of life care more obliquely, using hypothetical scenarios. This indirect approach enabled participants to engage with sensitive subjects that they had felt unable to when approached directly.

Sharing ownership of findings

Contributors were often involved in producing reports, including manuscripts for submission to academic journals. The motivations for this are different from involving patients in the production of patient-facing documentation, as most people who read academic papers are researchers and clinical staff. If patients or the public review such material, they can provide a useful sense check, as the potential readers of a manuscript may not have the same knowledge of a subject as its author.

Our group’s contributors could often identify gaps in how we contextualised our research or challenged our assumptions. BA and MD’s long-standing primary contributors helped to validate and identify themes in their qualitative data, reassuring them that their interpretations were accurate.

However, what motivated us most to involve patients and the public in this process was that we wanted to ensure that those who had contributed to earlier stages of the research retained ownership over how the findings were disseminated. It is important to follow International Committee of Medical Journal Editors’ (2023) guidance when you are determining whether a contributor is an author. If they are not, it is still important to thank and acknowledge them for their help in the same way you would any other non-author collaborator.