Patients with long-term conditions (LTCs) are well placed to influence the design, delivery and evaluation of services that they access over the duration of their illness and wellness because they bring to discussions the perspective of lived experience (Greenhalgh, 2009). Their involvement relies on patient and public engagement and involvement with empirical research that seeks to evaluate existing and planned services. In the UK specifically, pressure is intensifying from the Department of Health and Social Care (DHSC), policymakers, organisations associated with health care and those who fund health research for even greater patient and public involvement (PPI) (Newman et al, 2012; Locock et al, 2017; NHS Health Research Authority, 2020). PPI describes an active partnership between patients, members of the public and researchers in all aspects of the research process (INVOLVE, 2014). This can include identifying research priorities, the design of trials, data collection, analysis and dissemination of results. However, PPI can be challenging, due to the difficulties of engaging culturally diverse groups to undertake PPI, logistical and financial issues of attendance at relevant events, and the time burden of participation on PPI representatives (Ball et al, 2019).
Although there is paucity in the evidence for the impact of PPI in healthcare research, there is an increasing perception that the involvement of patients and the public at all stages of the research process leads to more appropriate, credible and better quality studies (Staniszewska et al, 2011; Brett et al, 2014; Domecq et al, 2014). The challenge of implementing continued involvement of patients and the public in the design and delivery of research within the health service remains. There is a need for innovative yet ‘real-world’ solutions as to how such involvement can be promoted, achieved and evaluated as successful. Despite evidence that engagement of patients and the public with LTC research and service development has increased (Coventry et al, 2014), the perception remains that much PPI activity continues to be paternalistic and tokenistic (Ocloo and Matthews, 2016; Trappes-Lomax, 2016). Much of this is attributed to the perceived difference in power relations between patients, the public, professionals and researchers, particularly in terms of who is the ‘expert’ (Vadiee, 2012; Brand, 2018). This can be seen to be operationalised in terms of selection of PPI representatives, limitations placed in which elements of the research process PPI is incorporated and prioritisation of conflicting stakeholder views (Lander et al, 2019). Overall power, even within PPI activities, conventionally remains with the researcher.
Tools, such as the INVOLVE framework, INVOLVE cost calculator, James Lind Alliance resources and Research Design Service guidance provided by the National Institute for Health Research (NIHR) have been developed to both guide and explicate PPI within research activities (Bagley et al, 2016). While the INVOLVE (2012) framework provides guidance on how to embed PPI within the research cycle, there is a recognition that this framework will be used differently within different contexts. Therefore, PPI is unique to the project, context or patient group, and best practice can be difficult to transfer from one setting to another. The GRIPP2 checklist—the first international guidance for reporting PPI within health and social care research—attempts to standardise reporting of PPI within research projects and make this input clear and transparent (Staniszewska et al, 2017). Good practice is increasingly demonstrated in individual research projects, but much less so in innovation or scoping of more general research themes (Tallon et al, 2000; Crowe et al, 2015).
There has been some work utilising PPI in the development of research priorities by groups such as the James Lind Alliance Priority Setting Partnerships and individual research teams (Manning et al, 2018), but this is done much less often than focused PPI within a specific research project. The importance of early PPI within identification of research priorities is advocated by organisations such as the James Lind Alliance, which highlights the risk of shared interests of patients, carers and clinicians being unrecognised and therefore under-researched if joint scoping work is not done between these stakeholder groups (James Lind Alliance, 2020). It may be argued that this broad scoping of research priorities requires different skills in PPI than PPI undertaken within specific research projects. Thinking broadly about a potential research area and recognising the breadth of possible priorities for research requires a specific set of skills. These are different to those required for reviewing study documents for plain English and acceptability of study procedures for potential participants.
Outside organisations such as the James Lind Alliance, and without the requirements for evidence of robust PPI of funding bodies, operationalising PPI in scoping research priorities for broad research themes can be challenging in an environment of constrained resources (Pizzo et al, 2015). The authors suggest that the event to which this article relates is an example of best practice in how to embed PPI within research at all levels. Not only did the event include the scoping activity that forms the basis for the discussion of this article, but it also gave PPI representatives the opportunity to give feedback on project ideas brought to the event by staff delegates as outlined in Brand and Bramley (2019).
Methods
Ethical considerations
This project was primarily a scoping exercise and was not undertaken as empirical research. In light of this, ethical approval was not required and therefore not sought. Ethical principles of research were followed, however. This included ensuring that all participants were fully informed before taking part in the project, as outlined below, and assuring confidentiality and anonymity within the reporting of project outcomes.
Setting
A group of 15 PPI representatives were invited to attend a meeting organised and funded by a Midlands-based UK teaching hospital trust's charity. There they would discuss research priorities for LTC management, and also meet staff who had potential research ideas that required PPI feedback. The definition of LTC was broad and encompassed any condition that could be controlled by medication or intervention, but not cured.
This article focuses on the scoping work looking at research priorities. The representatives were members of a hospital PPI network and were invited by the PPI lead for the hospital trust. They had experience of living with, or caring for a relative with, a range of LTCs including, but not confined to, diabetes, renal and gastroenterological disorders. All members of the hospital PPI network who were identified as having an interest or experience in LTC, as either a patient or carer, were invited to attend the event. Their decision was based on a briefing paper circulated to all invited representatives outlining the activities for the day, including the research priorities scoping exercise. All individuals who expressed an interest in attending were offered the opportunity to take part. The group was therefore self-selected and represented only a proportion of those initially contacted. The 15 representatives included males and females across a range of ages, backgrounds and experience of LTCs. Anecdotally, most were white British, but demographic information was not collected in a structured way. PPI representatives were not paid to participate in the scoping exercise, but were provided with travel assistance and refreshments during the day.
The facilitators of the scoping activity were staff of the hospital trust who were working in a clinical academic capacity and had a special interest in LTCs. These staff members were also members of a non-medical LTC research group formed within the NHS hospital trust, which seeks to support the network of non-medical researchers within the trust who are undertaking research within the area of LTCs. The topic was a priority for nursing and allied health professional-led research within the hospital trust, as is building capacity of non-medical researchers. Although this clinical research group has a broad membership across the hospital trust, the facilitators of the scoping activity were its core active and co-ordinating members and were self-selected. The seven female facilitators of the session comprised four nurses, two physiotherapists and a podiatrist. Some were known to the PPI representatives, but none were directly involved in their clinical care. This was an innovative event not previously held within the hospital Trust and, although all facilitators had experience of working within PPI activities, none had facilitated an event quite like this one.
The workshop took place at a hotel location away from the hospital site. The venue was easily accessible by personal and public transport. It was located within the local area of the hospital site. Financial and logistical assistance with transport requirements was provided where necessary.
Data collection
The workshop lasted two hours in total. The session began with a verbal and visual introduction of the aims of the workshop, the identity of the facilitators and the format of the activity. Ground rules were set out regarding confidentiality for participants. Information was given about how the discussion would be recorded and utilised moving forward. The discussion was not audiorecorded, but notes were made by facilitators throughout the sessions, and the outcome of small group discussions was recorded on large sheets of paper that were visible to all group members. It was highlighted that the outcomes of the discussions would inform research priorities for an LTC research group within the Trust and therefore would be shared more widely once summarised and put in written format. Most importantly, it was highlighted that the discussion was to be led by the PPI representatives and the facilitators' role was to record the discussion and ensure that all representatives had the opportunity to contribute.
Following the initial introduction, the definition of PPI in research was given to all participants: research with or by members of the public (INVOLVE, 2012); this emphasised its collaborative nature. In addition, some background to the various stages of the research cycle was given, how research projects were developed and approved, and how PPI could be incorporated at every stage of this cycle. The perceived value of PPI for researchers was also highlighted and the genuine desire of the facilitators to learn more and understand the PPI representatives' perspectives and views was emphasised.
The hospital Trust non-medical LTC research group (to which the facilitator belonged) was introduced and some potential broad priority research themes were identified (Box 1). These themes had been developed during an initial scoping exercise carried out with research group members, which had included one of the PPI representatives who was also present at the current scoping meeting. These themes were presented as a starting point, but it was emphasised that they should not restrict discussion. It was highlighted that all group members should give their perspectives, even if not related to the identified priority research themes.
Following this introduction, the group was divided into three smaller groups with about five PPI representatives and two staff facilitators in each. The group sizes ensured equal numbers of PPI representatives and staff facilitators between groups. The discussion took about 1 hour and then the outcomes of the discussions were fed back to the group as a whole for the final portion of the workshop. This allowed individual group ideas to be discussed further as a whole group.
Analysis
The feedback portion of the workshop began the initial analysis as common themes across the groups were identified and discussed further as a unified group. This discussion was again recorded in note form by the facilitators and also collated in view of all group members by the lead facilitator.
The written recordings of the discussions, both small and whole group, formed the data for analysis. This data were then analysed further after the workshop had completed. This was done in tandem by both the lead facilitator and another member of the LTC research group who had not attended the workshop. A thematic analysis approach was used by close reading of the data, initial coding, followed by grouping of codes into higher order themes (Charmaz, 2006; Hammersley and Atkinson, 2007). Once both researchers had completed this task independently, the higher order themes were compared and final themes were identified.
Findings
The PPI representatives identified three main themes that they felt required more research within the LTC field (Box 2).
PPI in research
Although the aim of the workshop was to identify research priorities within the theme of LTCs, one of the most interesting issues identified was not specifically related to this aim. Although all the PPI representatives had considerable experience in PPI within the hospital Trust, most knew little about the research process specifically. Many had never previously been asked to comment on, or be involved in, any research activity. The main involvement of the PPI representatives at this meeting had been with hospital Trust service evaluation work and redesign.
Having understood more about the research cycle, participants were keen to have more involvement in the earlier stages of the research cycle, such as developing research questions and planning. The PPI representatives found the dissemination, implementation and evaluation of the impact of research more familiar to them due to their experience of service redesign and their role of being patient experience advocates. This element of the research process appeared to use the skills they had developed in their previous clinical service-focused work. Earlier stages of the research process, including the development of research questions, and design and planning of research projects, was less familiar to the PPI representatives. They felt that contributing to this element of the process would require them to develop more research-based skills and knowledge in order for them to be fully effective in this role.
Self-management, empowerment and advocacy
Although the research themes initially presented were very broad, the participants talked in practical terms about specific barriers they faced within their experiences of health care. They initially saw these practical issues as those that required further research to find solutions. They included issues such as confusing labelling on medications, difficulties with self-administration during inpatient stays and understanding new medications prescribed on discharge from hospital. During the discussion, facilitators were able to use the identified practical issues to explore the more general themes facing the patient population with LTCs. This led to discussions about health literacy, self-management more generally, and the empowerment of patients and carers within health care. Participants were able to identify where their individual healthcare knowledge was greatest and how this led to better experiences and outcomes for them. Knowledge was seen to form the basis for empowerment and self-management for patients. Discussions centred on how research might be used to understand more about health literacy and its impact on patient outcomes across the broader patient population with LTCs.
One of the particular challenges faced by the patient population with LTCs is how the fluctuation in their condition over time influences their ability to self-manage and participate in care and decision-making. This is exacerbated by the perceived expectations of health professionals that patients will participate effectively in this activity. Sometimes patients found themselves unable to do this despite understanding the expectations, because they often lacked the practical strategies or assistance to enable them to self-manage effectively. Ideas that participants put forward to address this were annual self-management reviews and individualised self-management plans. This was in contrast to current healthcare reviews focusing heavily on clinical outcomes rather than strategies with which patients could contribute to achieving these outcomes. It was felt that research could play a role in the design, implementation and evaluation of such strategies and interventions.
Partnerships in health care
Again, discussions began with practical issues centred around maximising the value of outpatient appointments. Participants expressed concerns and worries about not having enough time or opportunity to discuss all of their current concerns. This led to a broader discussion of the meanings of partnership working in health care from a patient or carer perspective. It was also considered whether the rhetoric of shared decision-making was operationalised in practice.
Although understandings of partnership working tended to centre on the individual patient, participants articulated the importance of the role of carers. In particular, carers were seen to be an intrinsic element of the individual patient's context. It was deemed necessary to engage carers in order to provide care personalised to the needs of the individual. Even more broadly, support groups were identified as another element of the patient's personal context. By providing a source of information and support they influenced how patients and carers responded to healthcare interactions.
In research terms, there is an opportunity for research to explore how various actors within health care are perceived and how they perceive themselves in relation to others. In particular, the power relations that are embedded within health care require further study. This would enhance understanding of how stakeholders are able to work together to support LTC management.
Discussion
Setting the priorities for research can be achieved in numerous ways and, as such, a ‘recipe’ for PPI cannot be formulated. Although tools such as INVOLVE and GRIPP2 are helpful in offering frameworks for the consideration of PPI (INVOLVE, 2012; Staniszewska, 2017), PPI activity must be specific to the needs of the particular context in which it is being embedded. The outcomes of convened PPI groups have traditionally depended on the agendas set by researchers, which in turn often pertain to a specific health condition or predefined research question. This thereby perpetuates the power dynamics inherent in much conventional research (Vadiee, 2012; Brand, 2018). The strength of this particular format of PPI, which was a workshop session embedded within a broader conference on LTC management, lay in its ability to assemble not only people with a diversity of conditions and their carers, but also a wide range of health professionals in a single meeting.
Although the difficulties of power imbalances were not entirely overcome, as will be discussed subsequently, the priorities set within the groups were wide ranging and essentially inclusive and pertinent to all present. These broad issues have the potential to be overlooked when traditional PPI groups are gathered with a condition-specific focus. Although tools such as the INVOLVE framework and GRIPP2 checklist (INVOLVE, 2012; Staniszewska, 2017) give guidance on engaging PPI within the research cycle, this has usually been done within the context of a specific project. This event attempted to engage PPI prior to the development of any research question and project plan, and therefore was innovative in attempting to embed PPI from the very earliest stages of the research process. This activity did corroborate views that some PPI can be seen as tokenistic (Ocloo and Matthews, 2016; Trappes-Lomax, 2016) because, despite the PPI representatives involved in this event being well known to the hospital trust in question and having been involved in PPI previously within the organisation, many felt that they required further development of their skills into this activity in order to be enabled to participate effectively. The opportunity for this had not been offered to them previously. This brings into question the robustness of any PPI in which they had been involved previously and whether its effectiveness had ever been evaluated. This may indicate PPI being a ‘tick-box’ exercise, rather than an activity that was required to meet any standards of quality.
This work highlights how PPI representatives talk largely in practical terms about the challenges of living with one or more LTC. It was the role of the facilitators to transform these practicalities into a broader discussion of themes that synthesised the contributions of individual PPI members. From this synthesis, the themes of self-management, empowerment and advocacy, as well as partnership working, were identified as research priorities. Of the three priority themes initially presented by the LTC research group, two appeared to have most resonance with the PPI representatives' discussions, namely maximising health-strengthening behaviour in order to live well, and interventions to enhance excellence in self-management for those with LTCs.
A further practical issue was highlighted relating to the public and patients' knowledge and understanding of the research process. Participants felt that this may limit their effectiveness when commenting and contributing to research. PPI must therefore not merely give opportunity for patient and public representatives to have input into research, but must also be mindful of the need to address the knowledge and skills gaps that some representatives may think that they have. Knowledge was identified as the basis for effective participation in self-management of LTCs and the same appears to be true for effective participation in the design, planning, execution and evaluation of research activities.
The outcomes of the exercise were useful; however, it must be acknowledged that there were limitations to the approach used. As with most PPI events, one is the accessibility of the location for people with health conditions. As is often the case, minority groups were under-represented and self-selection of participants may have resulted in a restricted range of views being expressed within the discussion. This is a perennial difficulty of ‘conventional’ methods of engaging PPI. More innovative methods of engagement, often located within the PPI representative's own routine contexts and with the intention of eliciting minority opinions, are required to incorporate a greater range of views. In addition, this was a ‘professional’-led activity and was subject to the associated power dynamics that this entails.
Despite best efforts to be open and encouraging of a range of views, some PPI representatives may have felt unable to be open and honest about their opinions within this situation. A patient representative as lead facilitator may have alleviated some of the difficulties of the power dynamics inherent in the approach used in this case, although identifying an individual with the correct skills and willingness can be problematic. Finally, presenting the themes found by health professionals within the introduction may have suppressed discussion. This may have led to more corroboration of viewpoints between health professionals and PPI representatives than would otherwise have been the case. More robust, and perhaps less leading, preparation prior to the event for the PPI representatives may have allowed them to consider their views more carefully before taking part in the activity. Elicitation of PPI themes prior to the presentation of health professional-derived themes may also have allowed for more unconstrained discussion in the first instance.
The approach used in this instance was by no means perfect and was in many ways a pilot of what could be achieved. Therefore, there are a number of elements of learning to be gained from having undertaken this activity, but none negate the utility of the outcomes of the activity as it took place. It is hoped that this engagement of PPI is not perceived to be tokenistic or paternalistic, as has other PPI in the past (Ocloo and Matthews, 2016; Trappes-Lomax, 2016), despite the limitations identified.
The purpose of the exercise was to identify patient-led research priorities and this aim was achieved. In addition, some potential avenues for future research questions have been suggested. In order to fully embed PPI within the research cycle, however, further PPI is required in order to translate these potential research topics into robust research questions. The aim is to continue to use PPI throughout the research process as research projects emerge, to address the priorities identified. This work will ensure that potential funders can be assured that any proposals emanating from this work have been truly PPI led from their formulation to fruition.