7.1 Background to PPIE

7.1.3 PPIE and health research

INVOLVE (2010) propose that involving the public in health research should consist of ‘an active partnership between the public and researchers in the research process, rather than the use of people as the ‘subjects’ of research’ (p6). INVOLVE suggest that members of the public bring their own expertise and knowledge to the research process, a perspective that may differ from researchers’ beliefs and viewpoints.

In order to conceptualise PPIE activities in health research, Buckland (2007) sought to build a theoretical framework. Buckland (p7) condensed Arnstein’s (1969) ladder of participation into three categories, described in Table 11.

Table 11 Buckland's (2007) categories of participation Category of participation Explanation

Consultation Asking the public for their views and using those views to inform decision making

Collaboration An active, on-going partnership with the public. The public may collaborate with researchers to design, undertake and/ or disseminate the results of a research project

User-led The public designs, undertakes and disseminates the results of a research project

INVOLVE (2018) suggested that co-producing research projects between researchers and the public involves both consultation and collaboration. Central to INVOLVE’s idea of co- producing research is valuing the public’s expertise and sharing power over the research project. When compared to health research which has collaborated or consulted the public, little user-led research has been funded (Staniszewska, 2007). Oliver et al (2008) suggested

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that user-led projects do not get funded as there is not enough time or financial resources available to train the public in how to conduct quality research.

The integration of PPIE within the review of grant applications can identify issues that were perhaps missed by health researchers (Tarpey & Royle, 2006). Oliver et al (2008) argued that PPIE ensured that the perspectives of patients are explicitly addressed within research

questions; this makes the questions more meaningful to target populations. PPIE activities have also shaped studies by providing feedback on a study design or by offering a new perspective on findings (Brett et al, 2014; Mohor et al, 2010; Shippee et al, 2013). Jinks et al (2016) used a case of a Primary Care Research Centre to provide a historical account of PPIE in that specific centre, particularly focusing on the sustainability and impact of PPIE. The authors found that study teams reported enhanced ethical practices and improved validity of research instruments. The ability to test out the feasibility of study designs increased

researchers’ confidence that their study design was viable in a context outside of academia. Ennis and Wykes (2018) also found that studies which included PPIE activities when developing study methods were more likely to achieve recruitment targets. PPIE can also ensure that the research findings are disseminated outside of the academic sphere and to relevant sections of the wider community (Howe et al, 2010).

7.1.3.1 Challenges of PPIE

I will now discuss the challenges of integrating PPIE into the research process. One of the main challenges is ensuring that PPIE members reflect the study’s sample population. ‘Hard to reach’ groups, such as individuals with rare diseases and people from minority ethnic groups, are less likely to be involved in PPIE workshops (Hussain-Gambles, 2003; Crome et al 2011). Such groups may have different research priorities or perspectives on research processes.

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Within a narrative synthesis, Boote et al (2011: p111) identified common challenges when integrating PPIE into research; I present these challenges within Table 12.

Table 12 Boote et al's (2011) challenges of PPIE Challenge identified by

Boote et al (2011)

Description of challenge

Time pressures The involvement of PPIE has time implications for the research process

Resources Adequate resources such as funding and researchers’ time is needed to conduct PPIE

Continuity Research may struggle to involve the same PPIE members throughout the research process

Group dynamics Building a positive relationship between the researchers and PPIE members, and between the PPIE members themselves Research ethics Identifying if obtaining ethical approval is needed

‘Representativeness’ of members involved

Ensuring the PPIE members represent the wider population

Hyde et al (2016) suggested that the examples described by Boote et al (2011) provided a comprehensive framework for reporting the challenges of integrating PPIE within a study. I acknowledge the challenges provided by Boote et al’s framework when taking a critical perspective on PPIE in Section 7.2.5. I also draw upon wider literature as Boote et al did not specifically identify the challenges of integrating PPIE into qualitative research.

7.1.3.2 Training PPIE members in research methods

When integrating PPIE into the analysis phase of a study, it is important to decide if PPIE members should be offered a research methods training package. Williamson, Brogden, Jones and Ryan (2010) conducted a qualitative study that aimed to identify the strategies that older adults used to prevent and manage loneliness. To inform the research process, researchers recruited 10 PPIE members aged 55 years old and over. Williamson et al ran classes which

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taught PPIE members how to conduct a thematic analysis (Braun & Clarke, 2006). Following on from this training, each member of the PPIE group independently analysed and interpreted each interview transcript produced from data collection. These interpretations were used to critically examine and agree on the final findings of the study. Williamson et al argued that the PPIE group’s interpretation ensured that relevant themes were identified and explored, adding credibility to the overall interpretation of the findings. Lovell (2012) also aimed to enhance PPIE members’ knowledge of qualitative data collection and analysis methods by providing a training course for PPIE members. Lovell’s training course comprised of six sessions over the course of six months. The thirteen PPIE members that participated all reported an increase in knowledge about qualitative methods. Although the training course was resource intensive and required two to three trainers per session, one of the key messages that came through from the PPIE members was the view of being perceived as an equal amongst researchers throughout the training course. This contrasts Arnstein’s (1969) view that power differences exist between researchers and the public which are replicated without being reflected upon. However, Lovell’s research failed to explore if the researchers viewed the PPIE members as having equal power to themselves.

Bayliss et al (2016) aimed to identify an effective way of involving the public in a qualitative meta-synthesis study. The process of being involved in a meta-synthesis study was evaluated by eight PPIE members via an open-ended questionnaire. To enable them to understand the task, PPIE members highlighted the importance of training ahead of the workshop. The questionnaire was emailed to PPIE members by researchers who were involved in the meta- synthesis study; PPIE members may have been more critical if they had been asked to evaluate the study by a third party. Bayliss argued that training PPIE members is vital to enable them to be involved in research processes. However, it is debatable if trained PPIE

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members are representative of the wider public who may not be as knowledgeable about research methods.

7.1.3.3 Potential negative impacts of PPIE

PPIE could have a potential negative impact upon the relationship between researchers and PPIE members. Ali et al (2006) aimed to include PPIE activities within the design of a study upon oxygen supplementation in acute stroke patients. The PPIE group which informed this study included stroke patients and their carers. As a result of a stroke, researchers highlighted that potential participants could suffer from cognitive problems and may not have the capacity to give informed consent. The PPIE group felt that an inability to give informed consent should not prevent patients from participating in the study. There was an ethical conflict regarding the protocol design which resulted in tension between PPIE members and

researchers. Ultimately, the researchers were responsible for the research and made the final decision. Ali et al’s study highlights that researchers need to clearly define how PPIE can influence studies as PPIE members may lack knowledge about research governance.

A lack of clarity around the aims of integrating PPIE into the research process may result in confusion on PPIE members’ behalf (Coglianese et al, 2003). Coglianese et al found that feelings of confusion led to PPIE members feeling disempowered and questioning how they could contribute to the research process. Coglianese et al did not explore if such feelings prevented PPIE members from contributing to subsequent PPIE workshops. Researchers must try to foster an environment whereby PPIE members feel confident to voice their opinions (Bayliss et al, 2016). To feel confident to engage in PPIE activities, Bayliss et al suggest that PPIE members need clear instructions and examples of how they might inform the research process. Bayliss and colleagues also discussed that a PPIE member may develop a negative perception of PPIE activities if they do not feel comfortable in providing their feedback on the research; this may deter them from attending PPIE workshops in the future (Farrell, 2004). To

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build a PPIE member’s confidence, PPIE meetings need to be conducted in a clear and organised manner to prevent confusion.

An overarching problem is when PPIE activities are conducted in a tokenistic manner. Tokenistic PPIE is when the purpose of PPIE becomes less about the value of public

perspectives, and more about how such activities will appear to others (e.g. funders) (Domecq et al, 2014; Green, 2016). Research funders such as the NIHR, charities and research councils often require an element of PPIE within health research projects. The Research Excellence Framework (REF) also assesses higher education institutions and takes into account PPIE activities (Higher Education Funding Council for England, 2009). In a review of the literature, Shippee et al (2013) reported that PPIE is often done as a ‘tick box’ activity to meet the requirements of funders. Tokenistic PPIE fails to reap the benefits of integrating the public’s viewpoints within the research process and PPIE members may not feel as though their contributions are valued; this could have a negative impact upon PPIE members’ relationship with researchers (Ocloo, 2016).

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