Abstract Purpose This article presents a reflective account of Patient and Public Involvement (PPI) in the development of obesity and binge eating research. Method We established Patient Advisory Groups (PAGs) at two English regional National Health Service (NHS) weight management services. PPI was evaluated as follows: (i) PAG members completed a Post Participation Evaluation Questionnaire, (ii) PAG meetings captured group discussion on PPI involvement, (iii) practitioner and researchers produced written reflections on PPI and (iv) sources one to three were consolidated during reflections that took place via e-mail and telephone correspondence between researchers and practitioners, culminating in a summary SKYPE meeting between one practitioner and one researcher involved in the PAGs. Results Results in the form of reflections suggest guidelines on undertaking PPI were helpful with regard ‘what to do’, but less helpful on ‘how’. For example, suggestions for the management of interpersonal factors such as eliciting self-disclosure and managing power differentials are insufficiently addressed in existing guidelines. Conclusions The present case study illustrated how interpersonal considerations can help or hinder the optimal use of PPI. Recommendations for practitioners and researchers planning PPI are offered. relational dynamics, self-disclosure, communication, patient satisfaction, shared decision making, qualitative methods Introduction As early as 1993, UK government guidance of health research has shown a policy commitment towards consumer involvement (Patient and Public Involvement (PPI)). With the explicit objective of promoting PPI in research; and with support from the Department of Health, the national advisory group INVOLVE was established in 1996. Its function is to promote the active involvement of service users (patients) and carers, in the design, conduct, analysis and reporting of research . INVOLVE  surmise that meaningful engagement of the public benefits research via: (i) feasibility, acceptability, accessibility and relevance of hypotheses, assisting in the more precise definition of research questions; and (ii) increased adherence to experimental protocols . PPI should enhance the quality of research by producing research that is focussed on patient objectives, developing user-friendly participant materials and having more appropriate recruitment strategies [4, 5]. Where PPI is well planned, members can gain new skills and experience, feel more valued, respected and better represented. They may bring new insights and momentum to the research and dissemination processes [4, 6]. We aimed to meet INVOLVE guidelines in this case study inviting patients and practitioners to validate research questions and help establish methods of investigation with regard the design, testing and evaluation of an intervention targeting emotional eating. This case study presents reflections on this process and proposes recommendations to help optimize future PPI . Method The focus of this article is on evaluative data gathered in phase 4, however, the method is detailed in full to provide context. Participants Patient Advisory Groups (PAGs) were formed at two English regional NHS weight management services. PAG members were BED-obese patients accessing weight management services (female, n = 8; male, n = 2), or professionals (female, n = 2; male, n = 1) working with this group. On advice from the local NHS R&D representative, one male patient volunteer with experience of PPI was also recruited. During the evaluation phase, the two researchers (facilitating the PAGs), two lead practitioners (involved with patient participants but not PAGs) and one PAG practitioner debated the reflective accounts and outcomes of PPI. Measures Post Participation Evaluation Questionnaire The Post Participation Evaluation Questionnaire (PPEQ)  comprised five questions that sought to examine PAG experiences with PPI, with opportunity to provide additional unstructured feedback. Procedure Following favourable ethical review from the NHS Integrated Research Approval System (IRAS), prospective members of the PAG were identified by the lead practitioner at each site. Volunteer participants completed a consent form. Phase 1: Initial consultation Participants were provided with a booklet providing a lay summary of relevant research findings . Patients were invited to answer open ended questions in response, either via a booklet or online survey. For example, ‘If there was something you would like us to be able to explain now about emotional eating, what would it be?’ Responses were collated and illustrative quotes selected on the basis of relevance and frequency. These were anonymised and presented via PowerPoint at the PAG meetings for discussion. Phase 2: Initiating collaboration PAGs met at their respective NHS site. Two meetings were held with a period of consultation in between. The first PAG meeting began with an informal induction by way of a group discussion to help contributors understand their roles during PPI and develop confidence in voicing opinions. Thereafter, anonymised patient quotes from phase 1 were presented as a basis to stimulate further discussion with the aim of addressing: (i) who should participate in the study of emotional eating among BED-Obese populations; (ii) what methods would be most acceptable; and (iii) what are the pressing issues in this specialism . Phase 3: Ongoing consultation PAG members responded to four open ended online surveys to discuss methods of data collection, acceptability of specific research protocols and preferences for outcome measures. PAGs met a second time to reflect on the outcome of the online surveys and to contribute to an evaluation of PPI. Phase 4: Evaluation PPI was evaluated by four methods: (i) PAG members completed the PPEQ , (ii) a second round of PAG meetings captured group discussion on their involvement in the research, (iii) practitioner and researcher teams produced written reflections and, finally, (iv) these were consolidated during reflections that took place via e-mail and telephone correspondence between researchers and practitioners, culminating in a summary SKYPE meeting between one practitioner and one researcher involved in the PAGs. A counselling psychologist convened this SKYPE meeting to help extrapolate key lessons learned from the PPI. Analysis Verbal data were taped and transcribed; questionnaire and electronic data were collated. Data were analysed by the first two authors after each phase, and key findings were extracted through content analysis. In the first PAG, findings from the booklets were reviewed and verified. Following this, online consultation and feedback was used to verify the findings from the first PAG. New data obtained via ongoing consultation were then taken to the final PAG. In this way, we systematically triangulated findings across different sources of data, and used member checking to verify that the most pertinent and representative information had been collated. The reflective exchanges reported in the present case study were collected in phase 4. The following presents a review of the PPI process from patient, practitioner and researcher perspectives. Results and Discussion (i) PPEQ PPEQ data indicated that all members felt it was easy to talk during PAG meetings, that this was perceived to be helpful, and that the researchers were understanding. Open PPEQ feedback indicated that the meetings were ‘open and relaxed, clear that opinions and feedback are welcomed and appreciated.’ One member commented that she felt ‘…part of the group and not just a statistic’. Whilst some reservations were expressed, for example; ‘was a bit skeptical to start with’, all members expressed a desire to continue their involvement where possible. One member noted; ‘I have really enjoyed the involvement of the group. I found it very interesting and would happily participate in the future’. Two PAG members had proactively contacted the research team to enquire about the opportunity for continued involvement. (ii) PAG meetings Complementing findings from the PPEQ, patients reported satisfaction with the PPI process during PAG meetings. One PAG member, reflected: I was impressed with the way participants were willing to divulge details of a personal nature around the compulsions that led them to use food to affect mood. I attribute this to the professionalism of the research team who were able to create an atmosphere of trust among the participants so that a supportive and non-threatening atmosphere permeated proceedings. In this case study, participation in PPI was reported to be of benefit, empowering and enjoyable; largely as a result of knowledge sharing and discussions regarding common interests . This was illustrated in the following discussion: PAG member1: I’ve been hearing other people’s experiences and I’m coming up with some answers. PAG member2: I volunteered to just understand really, why we emotionally eat and so…even just like walking up here [for the PAG], it starts you thinking about it. Reflections from the PPEQ and PAG meeting indicated high levels of patient satisfaction with PPI experiences. This suggested that we had achieved our aims of collaboration to inform the development of a relevant research proposal. (iii) Practitioner reflections During the PAG launch, information collected from patients in a Pre-PAG information booklet (phase 1) were presented by the academic partners in a PowerPoint presentation. Two practitioners involved with one of the two weight management services (one involved in the PAG, one not) felt this information was presented as the ‘right answers’ and suggested this may have constrained the subsequent discussion by influencing PPI freedom to respond or disagree. They also felt that using PowerPoint was a subtle but powerful way of the researchers establishing their ‘expert credentials’ despite, ironically, having the least amount of ‘legitimate’ knowledge and direct experience in working with emotional eating. Practitioners reported feeling that their expertise was somewhat de-legitimized and suggested that PAG patient members felt both ‘led’ and unable to challenge the researcher led knowledge. These perceptions are captured in the written reflections offered by the practitioner co-author (not involved in PAGs) below. As a former academic, who has returned to clinical practice, I did not personally experience the same response to the academic psychologists as my colleagues or patients; yet I was able to recognize how academic credentials can appear more ‘legitimate’ than a patient or practitioner’s long history of direct clinical experience. Both patients and practitioners reported to me, privately, that they wanted to raise some issues but they had felt unable to do so because the PAG was being led by ‘experts from the University’. Some felt they had been ‘steered’ in a particular way to address a pre-set list of questions. Knowing the extent to which the academic partners tried to genuinely involve the patients and practitioner in the research process these comments felt very frustrating. This highlights how difficult it is to truly involve patients and practitioners in a collaborative process. Genuine intentions may be overruled by under-estimated tacit power. It takes time, effort and clinical skill, to develop a level of trust where patients feel able to talk about the underlying reasons for their disordered eating. This practitioner reported concern about the research psychologists’ lack of clinical experience, and perceived understanding of the complex aetiology underlying eating disorders and capacity to fully establish a collaborative client-centred process. This was experienced as a tension between personal interest in supporting a ‘good’ research process, and the service driven need for research involving treatment protocols for complex co-morbid conditions, not simply more information about the consequences of such. (iv) Researcher reflections Our PPI was confined by the availability of funding and regional and national health priorities. As such, we did not use an emancipatory approach to ‘identify and prioritize’ a research topic. In accordance with INVOLVE guidelines , our aims for PPI were to validate research questions and gain information on the accepted methodology for the proposed research. We believed that we were thorough in validating our research questions, and that the design of the resultant research was a product of effective collaboration with the PAGs. Finally, as researchers operating in a sensitive area, we prioritized the design of a safe and ethical process. Researchers were careful not to delve into the underlying reasons for patient practitioners disordered eating. These concerns were captured in the reflections of one academic research lead. As a non-clinician going into those meetings I’ll admit that I had a certain level of nervousness about it because you know you are dealing with a potentially vulnerable group, and that’s why working with [names clinical practitioner colleague], I knew I had them there in a support role, I thought that was a strength of working as a group of researchers and practitioners together. I personally gave thought to what would I do if a patient member got distressed in one of the groups, how would I manage that. (v) Consolidation of PPEQ, PAGs and written reflections An important point emerged that we advocate be noted in future research involving PPI. Despite patient PAG members reporting that they felt they could be open and honest, practitioners noted that these same patients reported the opposite to them. Indeed, a practitioner PAG member noted that during meetings patients ‘were giving their opinions and I’m thinking, ‘that’s not what you think’, and I couldn’t really say that in front of them… I knew their issues were much deeper than they were letting on publicly’. Issues of patient disclosure and the tensions posed by ‘privileged’ knowledge in a team of academic and practitioner researchers present a critical learning point. The PAG practitioner who noted a discrepancy in the disclosures offered by patient PAG members suggested that involving practitioners who did not know PAG members as patients may have encouraged greater patient honesty. This is a potential recommendation to take forwards from this case study. Paradoxically, we noted that incongruence of patient disclosure between researchers and practitioners may not have been identified without practitioner input. There were multiple dynamics at play in the PAGs which may have influenced patient member’s contributions. Practitioners and researchers had different priorities with regards the PAG discussions. Whereas researchers wished to validate health research questions and establish methods of investigation through PPI, practitioners were interested in clinical case formulation and found discussions to be superficial. Such tensions are inherent in fitting clinical and patient centered research to the requirements of a funding call. Thus, we encourage those embarking on PPI to carefully consider the presence and possible influence of dual relationships whereby PAG members occupy a dual-role of researcher and practitioner relative to patient PAG members. In looking to improve communication, researchers and practitioners agreed that the use of a PowerPoint presentation to communicate patient generated examples of emotional eating created a formal atmosphere to the initial PAG meeting, and potentially established an unhelpful early impression of the researchers as experts. The PAG practitioner reflected during the concluding SKYPE discussions; ‘I think probably the patients had you and [mentions second researcher] up here [uses hand to illustrate elevated status] cause they would have thought, these are academic people from a University’. The SKYPE mediator enquired how the participating academic and practitioner felt about these perceived differences: Practitioner: I think at first I was a bit like, oh god they’re gonna know loads, you know they work in a University they’ve got a lot of qualifications… Researcher: That’s something we’re trying to avoid because people have an expertise we just don’t have. So how could we try and have more of a level playing field? Discussion and Recommendations From our reflective discussions, factors emerged that had not been adequately acknowledged or addressed within the PPI process, but had nevertheless impacted upon the sincerely intentioned collaborative enterprise. Critical learning points taken from these reflections were: Attain clarity of PPI purpose and resolve differences in aims and priorities: Different perspectives are common in multi-disciplinary teams . In the present study, the challenges posed when practitioners undertake research with their patients in relation to PPI aims, disclosure, confidentiality and ethics were highlighted. Copeland  suggested that the best outcomes are achieved when everyone is clear about their roles, boundaries, how these interface with each other and the wider culture, and how the enterprise contributes to the common good. Ballatt and Campling  described this level of co-operation as ‘kinship’ which promotes kindness (p. 44), with behaviour contributing to a whole systemic process which reduces anxiety and defensiveness promoting the conditions necessary for compassion to be modelled by everyone involved. Gutteridge and Dobbins  reported that the time and resources necessary to establish effective PPI partnership working is frequently under-estimated. The current INVOLVE guidelines do not consider the interpersonal dynamics of partnership working. Support relevant disclosure whilst managing risk and safety, balanced alongside the ethical principles of respecting patient autonomy and confidentiality: This is a crucial consideration and perhaps the most challenging dilemma for which we could agree the fewest solutions. There is debate dating back many years which suggests others find this aspect of research difficult to resolve [14, 15]. Goffman  suggested that in unfamiliar situations, people may protect themselves by managing information and limiting self-disclosure. Cornwell  found that public accounts were more likely in response to a direct question, whereas private accounts are more likely to be elicited by invitations to tell a story. She suggests this occurs because the invitational approach shifts power subtly towards the participant. There seems to be consensus that time is necessary to build the trust required to support appropriate self-disclosure. From the earliest planning phase pay attention to relational dynamics, particularly perceived power and to the methods used to communicate so that tacit mixed messages are minimized: Harrison and Williams  wrote about the different forms of power and authority available to health professionals in their transactions with others, concluding that greater awareness of the ways these were transmitted, experienced and interpreted, could facilitate wiser use of power, particularly where there are real or perceived imbalances. To counteract potential imbalances in knowledge which may lead to a power differential, the INVOLVE guidelines  advocate the training of PPI members, but this is a contentious issue as it has been suggested that training PPI contributors is not always desirable . As an alternative to formal training, as recommended by Dudley et al. , the present study used an informal induction. The inclusion of a short PowerPoint presentation, intended to facilitate information transmission and free up time for discussion had an adverse effect on informality and contributed to perceptions of power imbalance, something we did not foresee. Create opportunities to share and establish ‘difference’ as a valued component of the research process: Attention to underlying tensions can be seen as encouraging conflict to develop or as a diversion from the task, but we suggest such time investment may be cost effective in the longer-term. Pratt et al.  proposed a typology of partnership behaviour intended to help project groups appraise the type of collaboration and involvement desired, and facilitate the behaviours most likely to meet the needs of the partnership at different stages of evolution (Fig. 1). Resilient, effective partnerships contain elements of all four quadrants and are likely to move between them over time, but Pratt et al.  acknowledge there may not be time in short projects to move through all the stages needed for sustainable relationships. Acknowledge constraints and limitations so these can be addressed: Well intentioned and motivated individuals may inadvertently take on too much, then feel guilty and obligated, which can breed undercurrents of discontent, instead of honest, if challenging, discussion. These are genuine tensions, particularly for practitioners expected to be research active. There is growing acknowledgement, particularly in the NHS, that these tensions may be irreconcilable . Similarly, researchers (who may tend to adopt a leadership and project management role) may need at times to show their own uncertainty and vulnerability. Orlans and Edwards  describe this type of disclosure as ‘double loop learning’ (p. 46), where all parties engage in shared learning with mutual benefit. Such dialogue is an essential component of a collaborative approach. Figure 1 View largeDownload slide A typology of partnership behaviours. Figure 1 View largeDownload slide A typology of partnership behaviours. These considerations, pivotal to success, are not currently addressed in PPI guidelines. We do not suggest any guidelines could offer a comprehensive overview that would have helped to avoid the issues encountered. Nevertheless, we would have valued specific prompts to think more proactively about relational aspects and power dynamics. Funding We gratefully acknowledge funding in support of this research awarded by the National Institute for Health Research Patient and Public Involvement Small Grants Scheme. References 1 Hanley B, Morris C, Staley K. An Evaluation of the Process and Impact of Patient and Public Involvement in the Advisory Groups of the UK Clinical Research Collaboration. http://www.ukcrc.org/wp-content/uploads/2014/03/PPI_Evaluation_Report.pdf (24 October 2017, date last accessed). 2 INVOLVE. Briefing Notes for Researchers. http://www.invo.org.uk/wp-content/uploads/2012/04/INVOLVEBriefingNotesApr2012.pdf (24 October 2017, date last accessed). 3 Iliffe S, McGrath T, Mitchell D. The impact of patient and public involvement in the work of the Dementias & Neurodegenerative Diseases Research Network (DeNDRoN): case studies. Health Expect 2013; 16: 351– 61. Google Scholar CrossRef Search ADS PubMed 4 Brett J, Staniszewska S, Mockford C. The PIRICOM study. In: A Systematic Review of the Conceptualisation, Measurement, Impact and Outcomes of Patient and Public Involvement in Health and Social Care Research . London: United Kingdom Clinical Research Collaboration, 2010. 5 Den Breejen EM, Hermens RP, Galama WH et al. . Added value of involving patients in the first step of multidisciplinary guideline development: a qualitative interview study among infertile patients. Int J Qual Health Care 2016; 28: 299– 305. Google Scholar CrossRef Search ADS PubMed 6 Minogue V, Boness J, Brown A et al. . The impact of service user involvement in research. Int J Health Care Qual Assur 2005; 18: 103– 12. Google Scholar CrossRef Search ADS 7 Swanborn P. Case Study Research: What, Why and How? London: Sage, 2010. 8 Sque M, Walker W, Long-Sutehall T. Research with bereaved families: a framework for ethical decision-making. Nurs Ethics 2014; 21: 946– 55. Google Scholar CrossRef Search ADS PubMed 9 Nicholls W, Devonport TJ, Blake M. 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Google Scholar CrossRef Search ADS 16 Goffman E. The Presentation of Self in Everyday Life . New York: Doubleday, 1959. 17 Cornwell J. Hard-earned Lives: Accounts of Health and Illness From East London . London: Tavistock, 1984. 18 Harrison K, Williams S. Exploring the power balance in physiotherapy. J Ther Rehabil 2000; 7: 355– 61. Google Scholar CrossRef Search ADS 19 Dudley L, Gamble C, Allam A et al. . A little more conversation please? Qualitative study of researchers’ and patients’ interview accounts of training for patient and public involvement in clinical trials. Trials 2015; 16: 190. Google Scholar CrossRef Search ADS PubMed 20 Pratt J, Gordon P, Plamping D. Working whole systems. In: Putting Theory Into Practice in Organisations . London: King’s Fund, 1999. 21 Loan-Clarke J, Preston D. Tensions and benefits in collaborative research involving a university and another organization. Stud High Educ 2002; 27: 169– 85. Google Scholar CrossRef Search ADS 22 Orlans V, Edwards DA. Collaborative model of supervision. In: Carroll M, Tholstrup M (eds). Integrative Approaches to Supervision . London: Jessica Kingsley, 2002, 42– 49. © The Author(s) 2018. Published by Oxford University Press in association with the International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: firstname.lastname@example.org This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices)
International Journal for Quality in Health Care – Oxford University Press
Published: Mar 1, 2018
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