Assessing the efficacy of coproduction to better understand the barriers to achieving sustainability in NHS chronic kidney services and create alternate pathways

Abstract Context Too many people living with chronic kidney disease are opting for and starting on hospital‐based dialysis compared to a home‐based kidney replacement therapy. Dialysis services are becoming financially unsustainable. Objective This study aimed to assess the efficacy of coproductive research in chronic kidney disease service improvement to achieve greater sustainability. Design A 2‐year coproductive service improvement study was conducted with multiple stakeholders with the specific intention of maximizing engagement with the national health kidney services, patients and public. Setting and Participants A national health kidney service (3 health boards, 18 dialysis units), patients and families (n = 50), multidisciplinary teams including doctors, nurses, psychologists, social workers, and so forth (n = 68), kidney charities, independent dialysis service providers and wider social services were part of this study. Findings Coproductive research identified underutilized resources (e.g., patients on home dialysis and social services) and their potential, highlighted unmet social care needs for patients and families and informed service redesign. Education packages were reimagined to support the home dialysis agenda including opportunities for wider service input. The impacts of one size fits all approaches to dialysis on specialist workforce skills were made clearer and also professional, patient and public perceptions of key sustainability policies. Discussion and Conclusions Patient and key stakeholders mapped out new ways to link services to create more sustainable models of kidney health and social care. Maintaining principles of knowledge coproduction could help achieve financial sustainability and move towards more prudent adult chronic kidney disease services. Patient or Public Contribution Involved in developing research questions, study design, management and conduct, interpretation of evidence and dissemination.

There are three main options available when a person goes into kidney failure: transplant, dialysis and supportive care without dialysis (sometimes called conservative management). Dialysis can occur in a hospital setting called unit haemodialysis (UHD) undertaken three times a week for 4 hour sessions at a time, or at home. If a person chooses home dialysis, there are generally two types of dialysis (peritoneal dialysis and home haemodialysis) available (depending on clinical suitability), both of which can be administered during the day or overnight depending on people's preferences and outcomes. National Institute for Health and Care Excellence (NICE) guidelines estimate that a minimum of 30% of the current dialysis population in the United Kingdom could be on home dialysis. NICE guidance also acknowledges the substantial impact that the different treatments will have on lifestyle and that people's values and preferences must be taken into account when presenting KRT options to them and their family. 13 Further background to the development of home therapies and global trends is presented in File S1.

| Sustainability and the Welsh National Health Service context
Wales is one of the four devolved nations of the United Kingdom, with a devolved healthcare system and a population of around 3 million. The incidence and prevalence of CKD are higher in Wales than in the rest of the United Kingdom, affecting 6%-8% of the Welsh population (around 200,000 people). 14 More than 3000 people are currently on KRT in Wales, with this number increasing year on year. 15 In 2017, Wales had higher numbers of people start on home therapies and higher numbers of people currently on home therapies compared to the UK average (Box 1).
For the first time in 10 years, commissioners of kidney services in Wales (Welsh Renal Clinical Network) were forced to request a net increase in investment from NHS Wales to sustain the dialysis service for increasing BOX 1 Summary percentages of the Welsh population starting and currently on dialysis compared to the UK average 2017 16 numbers of people. This exponential increase is considered unsustainable as money is finite and too many people are unnecessarily opting for more expensive UHD.
The National Health Service (NHS) adopts the well-established 'Three Pillars of Sustainability: Social, Economic and Environmental' model across all its health service improvement strategies and agendas for change. 17 In Wales, the Wellbeing of Future Generations (Wales) Act 2015 18 and the Social Services and Wellbeing (Wales) Act 2014 19 provide the key policy contexts for all health and social care including three pillar plans for more sustainable services. The underpinning healthcare policy in Wales is Prudent Healthcare, 20 which specifically recognizes the interdependence of specific challenges in creating more sustainable health and social care services. Examples of prudent healthcare plans include 'A Healthier Wales' 21 which puts care and support at home at the heart of service improvement developments, 22 long-term ambitions for health and social care systems to work together and, where possible, to shift services out of hospitals into the communities. 23 A key principle of prudent healthcare is coproduction, defined as 'a way of working whereby citizens and decision makers, or people who use services, family, carers and service providers work together to create a decision or service which works for them all'. 24 Since the implementation of prudent healthcare in 2014, Welsh policy makers encourage coproduction as the default way of working and are increasingly asking that the evidence which informs decision making is coproduced. 19,25,26 Increasing the number of people on home dialysis in Wales is a prudent healthcare policy. 20

| Coproduction in sustainable health services contexts
In a research context, coproduction is broadly defined as 'an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge'. 27 Coproduction is becoming more common, and new models of coproduction and methods of assessment are constantly being developed. [28][29][30] Recent coproductive health research reports on the capacity of coproduction to increase impact, facilitate knowledge translation, identify underused or unrecognized resources (people, services, networks), improve information and education processes by tailoring to individual need and support overall health improvement initiatives. [31][32][33][34] Increases in the breadth of examples of coproductive health services research have also highlighted challenges to coproduction. These include costs, resources, training, time, cultural differences and misunderstandings of what is (and is not) coproductive research. [35][36][37][38][39][40][41] Increasingly, however, health research is turning to the global contexts of coproduction, recognizing the potential value (in health service and policy contexts) while at the same time addressing known barriers and new challenges. 33,34,36,[42][43][44] Previous attempts to address low uptake of home dialysis have centred around shared decision making (SDM), specifically, the Making Good Decisions In Collaboration (MAGIC) model developed for the UK NHS. 45 MAGIC provides a template based on 'choice, option, decision talk' to help professionals implement SDM in clinical settings and explains the patient's experience as a journey from uninformed to informed through building rapport, mutual respect and active listening. SDM is widely recognized as best practice, and yet has been shown to be problematic to implement across the relevant healthcare settings as the necessary systems, infrastructures and wider support networks (e.g., well designed and validated decision support aids, patient empowerment, clinician training, culture shifts and system bureaucracies) are either not available or not working in ways that promote SDM models of care. SDM is also a key principle of prudent healthcare that has been implemented across international health contexts and policies, for example, the '1000 Lives Improvement' programme, 47 and changing the law in consent for organ donation. 48 2 | METHODS

| Study context
We conducted a study with two elements-a health service improvement element and an empirical element that included an analysis of epidemiological big data, costs of dialysis modalities and a qualitative study of patient and carer perspectives. In this paper, we specifically focus on the health service improvement element and the coproductive methods and outcomes, which were deployed to help answer a specific coproductive research question: Can coproduction lead to more sustainable adult CKD services in Wales? This question was predefined by the funder as part of a themed national health and social care funding call under the umbrella of research for the patient and public benefit scheme. The question was interpreted for this study as 'assessing the efficacy of coproduction to better understand the barriers to home dialysis and map alternate pathways'. Full details of the overall study are available in the published protocol. 49 We summarize the overall study in Figure 1 and at the same time highlight the specific health service improvement and coproduction elements that this paper focusses on. The objective of this study was to 'assess the efficacy of co-productive research in chronic kidney disease service improvement to achieve greater sustainability'. The core research team were multidisciplinary and included academics from health services and systems research, health economists, the lead kidney nurse for Wales, kidney service commissioners, nephrologists and people living with kidney disease.

| Settings and participants
This was a 2-year coproductive study . The following were either key partners or settings in the study: kidney services covering all kidney healthcare in Wales (Figure 2) Overall numbers of participants from the all-Wales NHS kidney team workforce are summarized in Box 2. As a coproductive study, all people living with kidney disease in Wales and their families were eligible for inclusion in the study. We used a purposive sampling frame to achieve a maximum-variation sample.
People were invited by healthcare professionals and kidney charities to participate in the various coproductive elements of the study. Healthcare professionals included those most directly involved in dialysis decision making and care (e.g., specialist nurses and nephrologists) and included the wider multidisciplinary team to ensure that the whole kidney service was represented.

| Coproduction
Specific coproduction principles that focussed on sustainability were adapted from Norstrom et al., 50 who produced a set of four general principles to underpin high-quality knowledge coproduction for sustainability research. These principles were then used to map the coproduction processes throughout the study and acted as the theoretical framework (Box 3). The broad aim was to assess the efficacy of coproductive research in a health service improvement study. In this context, that translated to better understanding of the barriers to home dialysis and mapping of alternate pathways. The goal was to cocreate a new vision for home dialysis services and achieve greater sustainability.
We also embedded the six UK standards for public involvement into the study (inclusive opportunities, working together, support and learning, governance, communications and impact) to ensure that coproduction was at the centre of all research activities and processes throughout. The UK standards are mapped against the full range of coproductive activities in this study with examples in File S2. All of the coproductive patient and public involvement was conceptualized as a partnership. Coproductive partners were coproducing and interpreting the research together and as such were fully informed of their roles and expectations in invitations.
No formal consent procedures were required as they were not research participants.
We present the purpose of coproduction mapped onto the principles of knowledge coproduction in sustainability research in Table 1. Table 1 also includes an 'interactive co-production activity log' with details of the meetings, events and engagements including numbers who attended with a breakdown of kidney professionals, the public and people living with kidney disease over the 2-year timeframe of the study. We offered travel and any out-of-pocket expenses for people with kidney disease and the public to attend any coproductive events or meetings organized by the research team.
Coapplicants who were people with kidney disease were paid a rate in line with the national standards for PPI throughout the study. 51 There were four specific components of the health improvement study, of which coproduction was fundamental to address: • Context-based: The process should be grounded in an understanding of how a challenge emerged, how it is affected by its particular social, economic, political and ecological contexts and the different beliefs and needs of those affected by it.
• Pluralistic: The process should explicitly recognize a range of perspectives, knowledge and expertise and consider gender, ethnicity and age in development.
• Goal-oriented: The process should articulate clearly defined, shared and meaningful goals that are related to the challenge at hand. We offered travel and any out-of-pocket expenses for patients and the public to attend any coproductive events or meetings organized by the research team. Coapplicants who were patients were paid a rate in line with the national standards for PPI throughout the study. 56 3. To review patient education materials and processes and 4. To better understand patient and public attitudes towards the costs of kidney care and services.
In the following section, we summarize how and what data were collected and analysed for each coproductive element, and how data were used to achieve the intended outcomes.
1. To create a vision of a more sustainable adult kidney service in Wales.
• Data collection To bolster these specifically curated meetings, the evolving framework in Table 2  • Data analysis The research team reviewed Table 2 together at their weekly core team meetings and discussed and further refined the evolving content.
The team hosted a specifically co-ordinated data analysis meeting (13 November 2019) with selected wider stakeholders including people with kidney disease who were becoming increasingly knowledgeable on the sustainability issues. Table 2 was cleaned, and each sustainability element was summarized and sense-checked by the multidisciplinary research team and people living with kidney disease and presented as a final stand-alone sustainability table (Table 2).

Variation in practices
− There are regional and local variations in paper-based educational materials. − There are regional and local variations in the ways in which education is delivered, for example, nurse-led patient groups, peer-to-peer support networks, patient-led education sessions. Multidisciplinary team (MDTs) meetings, shared decision making tools. − GPs, other health providers and the social care sector are more aware of general kidney health.
− Kidney charities, related third sector organizations and wider stakeholders can work to promote kidney health across Wales.
Population − Wales has a sicker and older population than England.
− CKD renal services in Wales are designed to meet the needs of an older and sicker population than England. Wales should also be a healthy place; we should work with wider public health services to make Wales a more healthy population.
− Encourage general awareness and promotion of kidney health and earlier interventions such as social prescribing. (note that we cannot change the current demographics through coproduction).

Wider service configurations
− There are limited resources in the wider health and social care services. − There are insufficient deceased donor kidneys available for transplant.
− Resources are reconfigured/re invested into key identified social care services to support PLKD's and family members' unmet social care needs and ensure that these needs are not barriers to choosing a home therapy. − Welsh CKD services should continue to promote and take opportunities to promote organ donation registration.
− Involvement of social services and PLKD can help identify more quickly the social services which could potentially be invested to support uptake of home therapies and best patient care. − Transplant recipients and people waiting can work with WG to share their story and register as a contact with comms teams.
Research − There is slow progression with new treatments. What can be changed through coproduction?

Public perceptions and attitudes
− People living with kidney disease face huge stigmas including attitudes of laziness, being accused of drug addiction and general lack of understanding of disease burden.
− General awareness and knowledge of kidney disease risks, burdens and treatments are improved across Wales.
-Kidney charities can work with wider charity providers and Public HealthWales to support raising awareness of total n = 10, n = 9 renal professionals (dieticians, social workers, physiotherapies, psychologists) n = 1 kidney charity provider.

To review patient education materials and processes
• Data collection There were around 15 specialist nurses working across five kidney centres in Wales. We contacted each centre lead nurse and requested that they collate their current paper-based education materials and send to the research team. We devel- | 599

Summary of key events and list of attendees
National Chronic Kidney Disease specialist nurse meeting (22.11.19): Total n = 13, n = 9 kidney professionals (specialist kidney nurses), n = 2 family member, n = 2 people with kidney disease Presentation from home therapies teams (25.11.19): Total n = 35, n = 12 kidney professionals (specialist nurses, nephrologists, social workers), n = 10 family members, n = 13 people with kidney disease Field visit with CKD nurse to home consultation (27. 11.19) total n = 3, n = 1 specialist kidney nurse, n = 1 family member, n = 1 person living with kidney disease Visits to dialysis Units across Wales ( We delivered presentations at kidney patient-led conferences and meetings to discuss costs and gather perspectives with larger and smaller groups of kidney patients. We also approached social services commissioners in Wales to learn from their perspectives and invited commissioners to a specially coordinated meeting on Zoom to discuss the sustainability of kidney services.

• Data analysis
Analysis was built into the discussions with members of the public. We asked about their perceptions of costs and asked them to list which treatments they felt were the most to the least expensive. This was followed by opinions on service configurations and, in particular, if and how they felt social services could support a home-first agenda. Field notes were collected from each engagement and presented back to the research team at core meetings for discussion. n = 20 kidney professionals (specialist nurses, physiotherapists, dieticians, pharmacists), n = 10 family members, n = 10 kidney patients Workshop with kidney 'befrienders' (12.11.19): Total n = 9, n = 1 family members, n = 8 people living with kidney disease 'Home therapies café' (07.02.20) total 9, n = 6 people with kidney disease, n = 3 family members.
3 | FINDINGS showed that there needed to be more defined pathways for people 'to get home' and more quickly (Figure 3). The pathways highlighted areas where the service was potentially picking up areas of unmet need that might be best placed elsewhere; for example, patients on a conservative management pathway were currently being managed by specialist dialysis nurses and potentially missing out on wider palliative care services.
We observed a lack of support services for both patients and family members in these cases (clinical, psycho/social, wider social care support) and uncertainty within the renal teams with how best to manage them as a result.

Review of patient education materials and processes
We found that the attitudes of professionals had a huge influence on uptake of home dialysis, and there was variation in perceived barriers to home dialysis and how people felt they could overcome them. The clinical nurse specialists enthusiasm for home dialysis and a very connected service both in practice (they work in the same offices) and in behaviour (all of the team felt no barrier was too high to overcome to get people on home dialysis) helped to create a culture of a home-first service. Many of these nurses even felt that the national targets were too low.
They also expressed concern that It was too easy for people to opt for UHD nowadays, and that the pathway had become the norm rather than the exception in Wales. We also observed clearly that policy contexts designed to develop and create more fair, equitable and parity to public health service spending were not well understood. Sometimes, discussions about costs and service reconfiguration were met with suspicion and an overall perception that potential saving was equated to costcutting. Responses to shifting costs between services were mixed.
The public generally supported the idea of shifting costs from social services to health, but not the other way around. The public perception was that social services were stretched to an upper limit and would be unable to cope with any costs newly attributed to social services. Social service workers, volunteers and commissioners initially struggled to see some of the unmet social care needs that the NHS was picking up and the potential costs of this. Their immediate reactions were that dialysis is a primary healthcare need, and they did not necessarily see the potential benefits of a more integrated health and social service package of care to pick up very clear unmet social care needs, for example, isolation and loneliness ( Policy contexts (e.g., value-based and prudent healthcare) were not well understood; generally, people understood potential service improvement initiatives as a cost-cutting measure and could see (at least initially) little potential benefits to them. Many healthcare professionals did not immediately connect potential impacts of UHD on long-term patient outcomes, especially nonclinical impacts, for example, restrictions on travel, work, childcare and lifestyle. Many had never heard of the policy contexts or were unclear as to how these related to them.

| Meaning of this study in relation to other research
As with previous research, we found that local practices or perhaps more accurately 'individual personalities' influence the uptake of home dialysis and help explain some of the observed variation between centres. [52][53][54] This study went a step further in terms of realizing how these individuals can be (re)imagined as a resource-key influencers to change-at the multiple levels from practice through to policy.
Generally, previous research into kidney health service improvement has a high focus on clinical outcomes. 55 More recent health service improvement initiatives have focussed on encouraging people already on UHD to have a more proactive role in their dialysis and increase opportunities for self-care. 56 In this study, the coproductive approach set within the context of sustainability-and not just the clinical benefits of home dialysis-supported key stakeholders to unpick on their own terms what they saw as barriers to home therapies and ways to achieve more sustainable services.
The coproductive outcomes in this study reinforce the assertions  highlighting that two in particular need more emphasis-economic benefits and multisectoral partnerships. This study unpacked key issues within all seven factors (Table 2), and by utilizing a coproductive approach, highlighted the ways in which the current service was working contradictorily to prudent healthcare and created a new vision for what a good adult CKD service looks like in Wales. 58 Commitment is needed from all the multiple stakeholders to develop networks and opportunities for meaningful knowledge coproduction and ways to sustain it. This includes working more closely and more frequently with people living with kidney disease, their family and networks of support. As of April 2020, there were 292 people on various types of home dialysis in Wales. This group are potentially one of the biggest untapped resources that can influence changes in attitudes and culture towards a home-led service and actually support (rather than compete with) the wider health and social care agenda towards prudent healthcare.

| Implications for clinicians and policymakers
Knowledge gained from this study includes the coproduced vision of more sustainable services, improved pathways to home dialysis and opportunities for greater integration of social care services and highlights ways to more proactively involve people with kidney disease more directly in service reconfiguration. This learning and the methods to coproduce it have the potential for transferability to similarly configured global healthcare systems. Redesigned pathways may even be more easily adapted outside of Wales, which has an older, sicker and more deprived population than other countries, and health literacy is generally low. Although additional account may need to be taken of country-specific social care systems and the ways in which they currently integrate with health services to make best and better use of existing resources.

| Strengths and weaknesses of the study
This is the first all-Wales co-productive study to address the sustainability of adult CKD health and social care services from direct and indirect key stakeholder perspectives. We believe that this is the first application of the principles for knowledge coproduction in sustainability research in kidney health research and can be built upon in future research, quality improvement and service development initiatives. 50 The study was limited to Wales, which has a predominantly white population, and it was not able to account for extraordinary events, for example, COVID-19 (data collection completed just before the pandemic), although many feel that COVID-19 has simply provided a stark reminder of the unsustainability of the NHS in general in its current guise and the need to keep people living well and at home. Finally, this study was not designed to measure any specific outcomes of sustainability, but rather the potential of coproduction to improve sustainability for the multiple stakeholders.

| Unanswered questions and future research
The question can coproduction lead to more sustainable adult CKD services in Wales was the focus of this study. In this context, we have only been able to partially answer it. We do not know explicitly whether coproduction will lead to greater sustainability of kidney services as this was not conceptualized as a longitudinal study to monitor behaviour change over time. For this, more research is needed over a longer period, with a larger and more diverse population to build upon the work outlined in this study, which includes templates on ways to work coproductively with NHS MDTs, kidney charities and people living with kidney disease. The NHS now needs to implement the new clinical pathways and embrace the transformational roadmap to change that was co-produced with patients. 44 Going forward, it will be important to evaluate the outcomes of coproductive research and processes using routine data collection methods, for example, routinely collected patient data, health economics modelling, patient-reported outcome measures and patientreported experience measures.

| CONCLUSION
Coproductive research helped start a conversation between key stakeholders and researchers about sustainability. Much more needs to be done to increase the overall understanding of NHS financial and service structures to ensure that this is not a barrier in any future coproduction. Coproduction has the capacity to identify and reverse