Patient involvement in a qualitative meta-synthesis: lessons learnt

Context

In 2014, the authors collaborated with eight patient research partners (PRPs) to complete a meta-synthesis of qualitative studies to explore perceptions of predictive testing for those at risk of developing a chronic inflammatory disease [14]. This study was part of the EuroTEAM project [15] and used meta-synthesis methods to investigate common themes and implications for future predictive testing programmes. The PRPs involved in this study were from a number of European countries (UK, Sweden, Estonia and Romania), and included PARE (People with Arthritis/Rheumatism in Europe) board members and founders and members of national rheumatic and RA patient organisations. The PRPs were initially recruited to give academic and industry partners feedback on research and provide an insight into the experiences of Rheumatoid Arthritis patients. They attended a PRP launch event as part of the wider EuroTEAM study, where they were made aware of what their role as a PRP would entail, and the nature of the research they were taking part in. This group were highly articulate, all female, and had previous experience of being a PRP as they had been involved in the larger EuroTEAM study, and contributed towards other research activities within that study. This meant that they had an understanding of the research process. An additional PRP was recruited from a Rheumatoid Arthritis service user group at the University of Manchester.

All PRPs were invited by email to take part in the meta-synthesis. The researchers did not collaborate with PRPs when developing the research question, although the PRPs were involved in the writing of the EuroTEAM grant application. PRPs also had some input into the search strategy as the researchers provided updates on the progress of the review via teleconference calls while the searches were completed and the papers selected. This helped PRPs to gain familiarity with the review process. A second email asked for three volunteers to help to develop a coding framework for the data in order to co-produce the themes with the researchers. Three qualitative papers were selected at random from the 11 papers included in the review and were sent to the first three volunteers.

In line with recommendations [2], we developed training that was tailored to the roles of patients, in the form of a set of written instructions on how to code the results sections (Appendix 1). It was necessary to develop written materials rather than face to face training as the PRPs were based across Europe. The training material was developed from the qualitative methods teaching material delivered to undergraduate students and trainee doctors with no qualitative experience. This included examples of qualitative research and meta-syntheses techniques. The material was shortened, and graphic representations were added. Although research experience varied within the group, the authors decided to prepare the materials with the view that all PRPs were new to qualitative research. This promoted consistency in the techniques that were used. The first draft of the materials was shown to a PRP, who highlighted any sections that were unclear or ambiguous. The authors then made the necessary changes before circulating. All PRPs were given three weeks to complete this task and were also given the option within the email of a phone call to talk through the guidance if required. Their feedback and recommendations supported the researchers’ coding framework and no substantial changes were made.

The aim of the session was to get patient feedback on whether they thought that the researchers had missed any important themes, or highlight whether they would have interpreted the data in a different way. The answers to the questions supported the themes presented by the researchers and highlighted the need to report clear recommendations for practice. PRPs helped to prioritise the data by choosing which quotes were included in the paper, organise themes and develop recommendation for practice, discussing the practicalities of how a new or improved intervention programme would work. Patients brought their own experience and helped the recommendations come to life, ensuring they were acceptable and valuable to patients. Considerations such as the emotional impact of any interventions were also discussed [14].

Evaluation

An open ended questionnaire (available from the authors) was developed to collect data about the PRP’s experience of collaborating with researchers to complete a qualitative meta-synthesis. Questions were developed from a review of the literature and discussions within the research team. The eight PRPs who worked on the meta-synthesis were sent this questionnaire by the researchers via email. Questions focused on the patients’ experience of training for this activity, what they gained from the experience and how the process could be improved. The email, which was sent in June 2015, also contained information on the process of the review to refresh their memory: what they had been asked to do and when, and the instructions they had received. All patients were given four weeks to complete the evaluation.

Analysis was inductive, using thematic analysis [17]. Disconfirming evidence was actively sought and was used to modify emerging themes. The questionnaires were read, annotated and categorised independently by KB and RS. The researchers then met to discuss the themes. To support our interpretations, we present illustrative extracts from the data.

Understanding the research process

The need for face to face training

Time provided for each task

The focus group to discuss themes

Providing feedback

Personal benefits for patient research partners

Lessons learnt: recommendations for PPI in a qualitative meta-synthesis

Comparisons with existing literature

This study developed a set of training materials for PRPs (Appendices 1 and 2) with the aim of supporting a collaboration between PRPs and researchers in a qualitative meta-synthesis. An evaluation of these materials found them to be clear and helpful, however, PRPs also highlighted that some amendments should be made to these documents if they are to be used as a template for future projects. For example, a glossary should be added to clearly explain all terminology, and a small assessment and evaluation at the end of the training could also identify any further training needs. An analysis template with a clear example of the level of feedback required would also be beneficial and should be developed with PRPs to add to the training. Furthermore, PRPs were recruited from across Europe therefore geographical distance and time constraints meant that training was done remotely by email. However, PRPs stated that face to face training would have been preferred. Buck et al. [13] found that face to face meetings were more conductive to forming relationships with PPI contributors than teleconferences. Therefore a video conference may be a preferred option when PRPs are in different countries. These recommendations are in line with Noe et al. [22] who state that a key consideration for any training is that it engages with the diversity of learners’ needs and is meaningful from their perspective.

Not all PRPs in this study were able to develop an understanding of the research methods due to the existing commitments and limited one to one support. These individuals therefore relied more on their personal experience to make comments and suggestions on the paper rather than analysing the data. This level of involvement is reflected in a systematic review completed by Rees and Oliver [23] where researchers produced a systematic map of the literature and a group of PRPs decided what to focus on and which outcomes should be prioritised. Although PRPs were able to use their personal experience to comment on the paper, they may have had greater input if they had had more time to develop meta-synthesis techniques and analyse the data.

As conducting a review can be very time consuming, PRPs may prefer to develop the focus of the review rather than being involved in the analysis of the data. It is therefore important to negotiate the level of involvement with PRPs before the study begins to ensure that involvement is meaningful and not simply tokenistic [6, 11, 16]. This is supported by Harris et al. [19] who found that although sustained and equal involvement of PRPs in the review process substantially improved the quality of the review, the level of participation should be flexible considering issues of time and cost, researcher skills and experience in PPI; and the circumstances in which the review is funded. This issue points to a ‘know-do’ gap, whereby researchers’ talk of the importance and value of PPI in the ‘ideal’ world in contrast to their experiences of ‘the reality’ of implementing PPI in practice where time restrictions can form barriers to PPI [24]. By considering what is achievable in a given time frame the PRPs and researchers can work together to consider where PRP input is most valuable for individual projects [11, 13].

The authors had very little disagreement with PRPs on the analysis of data during this meta-synthesis. However, if more time had been available for the PRPs to complete the analysis before the focus session, more significant changes to the themes may have been suggested. Further guidance should be developed on what to do when PRPs and researchers have contrasting views about data. For example, Robinson et al. [25] found that it can be difficult for researchers to relinquish control and work with patients to develop themes. Training may be beneficial for researchers on how to meaningfully involve patients in a meta-synthesis/review and manage this distribution of power. Further research is therefore necessary with PRPs to develop training allowing contributors and researchers to learn from each other [2]. Consideration might also be given to training PPI contributors and researchers side-by-side [11]. Buck and colleagues [13] also state that PPI in systematic reviews could also be extended to involve patients in the distribution of research findings to relevant groups.

Strengths and limitations

To our knowledge, this is the first study to evaluate PRP training and involvement in a qualitative meta-synthesis. The insights of PRPs can be used to help researchers plan PPI in a qualitative meta-synthesis. This follows the recommendations of a recent study of the UK health and social care research community which informed the development of a Public Involvement Impact Assessment Framework (PiiAF). This emphasises the value of well thought-through planning before implementing PPI as well as the subsequent evaluation of its impact [26].

Previous research has found that it can be difficult to find and engage patients with an interest in and understanding of the research [13]. However, the researchers in this study had access to articulate patients, who were already fully engaged in the topic as they had previously worked on other RA projects. This meant that they had an understanding of the research process and the constraints on researchers [11]. Enany et al. [27] state that PPI contributors with higher levels of education may be prone to over identify with the perspectives of researchers rather than challenging them [27]. However, patients do need certain skills to be able to contribute to systematic reviews which include the need to be able to articulate ideas and listen to other people’s ideas and work in a group. Resources must also be considered. The PRPs in this volunteered as part of the wider EuroTEAM project, [15] and therefore received no payment. If researchers need to recruit PRPs for specific projects, it is recommended that they follow the INVOLVE guidelines for payment [2].

PRPs in this study were involved in coding the data, and developing the themes. It was not possible to collaborate with PRPs in the earlier stages, although the patients were consulted about the search strategy and were involved in the writing of the EuroTEAM grant application. Recruiting a PPI co-applicant when writing the research proposal would allow PPI contributors to collaborate with researchers and guide the focus of the meta-synthesis. This is important as Fudge et al. [28] suggest that decisions made by professional researchers at the outset of a study have a cumulative and significant influence on the potential for PPI to impact on a study and that involvement is more difficult to achieve once studies are under way.

When reflecting on the level of control in the review process, it is important to recognise that the researchers trained the PRPs in coding so the initial phases were very much in the control of the researchers. However, as the PRPs in this study were allowed to code the data independently, they were in full control of the themes they developed. When the themes were incorporated into the researcher’s analysis, the direction, and therefore the level of control, was shared. Although the authors’ acknowledge that a PRP lead method may produce different results, this may not be as methodologically robust as PRPs are not fully trained qualitative researchers.

It is important to note that this evaluation was conducted by the researchers involved in the meta-synthesis. PRPs may have been more critical if they were asked to evaluate the study by a third party. Nevertheless, public contributors did provide some critical accounts so it seems unlikely that they struggled to articulate their own perspectives regarding training. This study also focuses on patient involvement in a qualitative meta-synthesis. Further research is needed to evaluate the involvement of PRPs in other types of systematic reviews including realist, effectiveness and quantitative meta-synthesis [21].

Consent to publish

The authors have obtained consent to publish from the patient research partners to report individual data.