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Keywords:

  • cancer services;
  • commissioning;
  • patient and public involvement;
  • user involvement

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Design
  6. Findings
  7. Discussion
  8. Conclusions
  9. Acknowledgements
  10. Source of funding
  11. Conflicts of interest
  12. References

Background

English NHS guidance emphasizes the importance of involving users in commissioning cancer services. There has been considerable previous research on involving users in service improvement, but not on involvement in commissioning cancer services.

Objective

To identify how users were involved as local cancer service commissioning projects sought to implement good practice and what has been learned.

Design

Participatory evaluation with four qualitative case studies based on semi-structured interviews with project stakeholders, observation and documentary analysis. Users were involved in every stage from design to analysis and reporting.

Setting and participants

Four English cancer network user involvement in commissioning projects, with 22 stakeholders interviewed.

Results

Thematic analysis identified nine themes: initial involvement, preparation for the role, ability to exercise voice, consistency and continuity, where decisions are made, closing the feedback loop, assessing impact, value of experience and diversity.

Discussion

Our findings on the impact of user involvement in commissioning cancer services are consistent with other findings on user involvement in service improvement, but highlight the specific issues for involvement in commissioning. Key points include the different perspectives users and professionals may have on the impact of user involvement in commissioning, the time necessary for meaningful involvement, the importance of involving users from the beginning and the value of senior management and PPI facilitator support and training.

Conclusions

Users can play an important role in commissioning cancer services, but their ability to do so is contingent on resources being available to support them.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Design
  6. Findings
  7. Discussion
  8. Conclusions
  9. Acknowledgements
  10. Source of funding
  11. Conflicts of interest
  12. References

Service user and carer involvement in health care (also referred to as patient and public involvement (PPI) amongst other terms; hereafter called user involvement) has been a key principle of English health policy for over twenty years. User involvement takes place in many different aspects of health care – planning, delivery, service improvement and research. Extensive research has been conducted into the impact of user involvement, but the general conclusion is that the evidence for its effectiveness is weak; not that there is strong evidence that it is ineffective; rather, the methodological challenges of evaluating it mean that conclusive evidence is rarely found.[1, 2]

This article explores user involvement in commissioning (called ‘purchasing’ in some contexts internationally) cancer services in the English National Health Service (NHS). This is an important area for study because user involvement in the 28 geographically based English cancer networks of local commissioners and cancer service providers is generally more advanced than in other areas of health care. Most cancer networks have well-established partnership groups, which contribute to local service improvement.[3] This study is based on a participatory evaluation of four case studies of user involvement in cancer services commissioning initiatives.[4] The projects were identified by a National Cancer Action Team (NCAT) steering group (NCAT is an agency within the English NHS with a remit to improve cancer services primarily working with the cancer networks). No additional resources were made available to the projects by NCAT over and above those already provided by the cancer networks. The overarching aim was ‘to identify how users have been involved as local projects set out to implement good practice and what has been learned from the process.’ Users in this context are defined as current and past cancer patients or carers.

Background

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Design
  6. Findings
  7. Discussion
  8. Conclusions
  9. Acknowledgements
  10. Source of funding
  11. Conflicts of interest
  12. References

In the White Paper Equity and Excellence: Liberating the NHS, the UK Coalition government affirmed its commitment to ‘putting patients and the public first’, in particular the philosophy of ‘no decision about me without me’.[5] Although often focusing on involvement at the individual level, this philosophy applies equally to population-level commissioning, which can be conceptualized as a series of stages including needs assessment, prioritization, service design, contracting and performance management of service providers.[6] Under the Coalition's plans, NHS commissioning is being reorganized with clinical commissioning groups (CCGs) replacing primary care trusts (PCTs) as the main local commissioning bodies and the establishment of a new national NHS Commissioning Board.[2] Underpinning these new structures is a continuing central policy commitment to user involvement at every level of NHS decision making.

Despite this continuing commitment, there is a growing body of evidence that shows that the opportunities for users to exercise real involvement are patchy in practice. A recent survey of PCTs found that ‘while some PCTs have embarked on ambitious programmes to engage patients and the public in commissioning, many are not ready for the new challenges which confront them'.[7] Similar conclusions about the fragility of involvement structures have been arrived at by most recent commentators.[8, 9] Such conclusions should not be a surprise; in a wider review of user involvement in change management, Crawford and colleagues concluded that barriers to user involvement identified in the NHS literature are remarkably consistent with those reported in other public sectors.[2] Recent research with cancer service users has identified similar issues, for example around professionals' lack of clarity about the aims and objectives of involvement.[10]

Most research to date has focused on involvement in service delivery, with relatively little attention to commissioning; the few studies that have been published have cast doubt on the effectiveness of user involvement in commissioning.[11, 12] Most pertinently in the context of the development of CCGs, recent research on user involvement in practice-based commissioning (a precursor to CCGs) identified significant difficulties in embedding involvement.[13] Thus, the policy commitment to user involvement in commissioning is clear, but so too is the evidence of continuing barriers to users exercising real voice.

Commissioning of cancer services is a particularly complex process that at the time of this evaluation involved collaboration between strategic health authorities, PCTs, NHS trusts and their cancer networks. The commissioning process was underpinned by a series of strategies for delivering cancer services in England.[14-16] To support cancer commissioning, a web-based Cancer Commissioning Toolkit was made available.[17] Commissioning was also supported by model service specifications for each cancer pathway. The Improving Outcomes Guidance issued by the National Institute for Health and Clinical Excellence (NICE) for individual tumour sites has been an important element in determining the cancer pathways.

Most recently, the Coalition government published Improving Outcomes: A Strategy for Cancer.[18] An expressed aim of the new strategy is to put the public, patients and their carers at the heart of cancer services. This emphasizes the role of new local HealthWatch organizations in ‘helping to shape services by being involved in commissioning decisions…' and their role on the new health and well-being boards. The strategy recognizes a role for cancer-specific involvement in partnership with professionals and the good progress cancer networks have made in encouraging effective user involvement.

There is an emerging literature on cancer service users' involvement in commissioning. In 2004, the charity Macmillan Cancer Support commissioned an evaluation of the Cancer Partnership Project, an initiative that established collaborative working in cancer networks between users and professionals aimed at improving local cancer services.[19] Most recently, Macmillan Cancer Support commissioned a study that demonstrated the impact of user involvement in cancer services in the UK.[1] This study found that although progress had been made towards genuine partnership working between users and health professionals, there was little evidence to date of effective user involvement in commissioning cancer care.

NCAT therefore established a multidisciplinary steering group including commissioners and users to consider good practice and organized a stakeholder workshop bringing together 100 users, cancer professionals, involvement leads and the voluntary sector. Using a mixture of consensus discussions, short presentations, a dragons' den exercise and open space discussion, participants identified priority principles and recommended practical action.[20] Following the workshop, the evaluation reported here was commissioned from the University of the West of England by NCAT and Macmillan Cancer Support to identify and spread good practice in user involvement in commissioning cancer services.

Design

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Design
  6. Findings
  7. Discussion
  8. Conclusions
  9. Acknowledgements
  10. Source of funding
  11. Conflicts of interest
  12. References

This project was designed as a participatory whole systems evaluation.[21] The project was participatory in two ways. First, the evaluation was guided by an NCAT steering group of stakeholders, including those involved in the user involvement in commissioning projects to be evaluated. Thus, stakeholders were involved in the evaluation design and contributed to the analysis. The second sense in which the evaluation was participative was the integral involvement of cancer service users. From the beginning of bid development, a user was involved as a co-applicant. The proposal also included the recruitment of additional users as project workers for the intended three case studies. Thus, the majority of the field work for the project was designed to be carried out by users rather than by academic researchers. The intention was to model in our evaluation the user involvement the NCAT steering group recommended to their commissioning projects.

A key factor in the plans of the NCAT steering group was that there was no external funding for the user involvement in commissioning projects; rather, the intention was that the evaluation would follow existing ‘real-world’ user involvement in commissioning linked to members of the steering group. Three case studies had been identified by the steering group prior to the evaluation tender being awarded, geographically located in cancer networks in the North, South and Midlands, respectively. By the time the evaluation began (October 2009), it became clear that the Midlands project would not be going ahead in the form initially envisaged and that a replacement project would need to be negotiated; one was identified and discussions continued into January 2010 at which point local stakeholders for this potential replacement did not feel able to participate in the evaluation.

In the South of England, the ‘project’ in fact included two separate initiatives, a chemotherapy project in one PCT and a radiotherapy project in another. Although there were a few common cancer network stakeholders across the two projects, over the first half of 2010 it became increasingly clear that these were in fact two distinct projects and should be treated as such by the evaluation (projects coded as S1 and S2). At the same time, there were significant delays to the North of England project, which had intended to be an evaluation focused on a review of a regional specialist service across three cancer networks. This project had been intended to begin in November 2009, but after a series of delays, it became clear in June 2010 that the project was not going ahead. As a project worker already had been appointed for the North, a rapid discussion was then held with the three cancer networks to identify an alternative project. All three networks had relatively recently undertaken reviews of oesophago-gastric (OG) services with user involvement, and after further discussion, it was agreed to look retrospectively at the user involvement in the review processes in two of the networks (projects coded as N1 and N2).

There were three levels of data collection: in the four case study projects, within the NCAT steering group and reflective practice by the evaluation team. In the case studies, the data collection took the form of qualitative semi-structured interviews, observation and reflective sessions within project meetings and documentary analysis. Interviews were audio-recorded (with one exception where the participant declined recording) and fully transcribed. Within the NCAT steering group, there were facilitated reflective discussions, which were audio-recorded and from which notes were subsequently made. Within the evaluation team, reflective notes were made of team discussions.

Interview data were thematically analysed by members of the project team.[22] A coding framework was agreed integrating the initial evaluation objectives and themes identified by the team as emerging from the reading of early transcripts. Each transcript was then independently coded by two members of the team, and coding collated and processed in NVivo 8 by the principal investigator. Themes and analyses were drafted within the team and tested with the steering group and project participants before being finalized.

In carrying out this evaluation, we were concerned to maintain the highest ethical standards. It was agreed by NCAT and participating NHS organizations that in National Research Ethics Service (NRES) terms, this was a service evaluation and therefore did not require NRES review. However, the university uses different categorizations of inquiry and categorized this project as research; therefore, an application was submitted to and approved by the Faculty Research Ethics Committee. Written information was provided to all those interviewed, and explicit consent was requested and obtained. All participants were offered the opportunity to comment on how their information had been used in the final report.

Findings

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Design
  6. Findings
  7. Discussion
  8. Conclusions
  9. Acknowledgements
  10. Source of funding
  11. Conflicts of interest
  12. References

Twenty-two participants were interviewed across the four case studies with participants given an anonymous code (P = professional; U = user). The four case studies were similar in having senior cancer network professionals supportive of user involvement in commissioning, established cancer service user partnership groups and support from cancer network and/or PCT-employed PPI facilitators. Thematic analysis identified nine themes: initial involvement, preparation for the role, ability to exercise voice, consistency and continuity, where decisions are made, closing the feedback loop, assessing impact, value of experience and diversity.

Initial involvement

There were a number of common themes across the four projects around the importance of users’ initial involvement in commissioning. Most but not all users had become involved through a cancer network partnership group and found getting involved in commissioning a natural progression from other aspects of involvement:

I was asked at the partnership group if I would produce or be willing to do a talk on my experience of chemotherapy … and that was my involvement at the study day when this whole project, for want of another word, was kicked off.

[U1S]

Recruitment to commissioning groups was normally through informal invitation rather than through formal recruitment. The pool of available users was not large, and people were sometimes asked to contribute to commissioning a service for a cancer that had not personally affected them. People were invited to participate for their experience as cancer service users rather than because of any particular commissioning expertise and indeed, the more experience one had, the more doubtful some professionals were of ‘professional users’ or the ‘usual suspects’. Some professionals reflected that they perhaps too often invited the same users whom they knew were competent and so were confident would be able contribute to commissioning groups. Users and professionals both recognized the importance of involving users from the very beginning:

The best practice we demonstrate [was] just inviting those patient and carers right at the very outset.

[P3N]

Preparation for the role

A few users had prior experience of contributing to strategic committees from previous work. Other users did not and had to develop this expertise. Users valued being involved from the beginning of the commissioning initiative, being well briefed, with clarity on the expectations for their roles and how they could contribute. As one experienced user put it:

Don't put anyone [service user] on a clinical group unless you tell them precisely what role they will play, make sure they know.

[U1N]

Where such clarity was provided, users felt able to contribute effectively to commissioning discussions; where such clarity was not forthcoming, they could be frustrated and dissatisfied. The PPI facilitators employed by the cancer networks and PCTs were key in supporting users’ initial involvement, and they were often consulted by other professionals on how and whom to involve. Users were very aware of the costs in time and emotional energy of contributing to commissioning projects and expected that their expenses at least would be covered, although some also felt some further payment should be made. Having peer support and a critical number of users involved were seen as beneficial, although not necessarily sufficient, as the mixed experience of a relatively large patient reference panel demonstrated. Even with two users on a commissioning group, contingencies could mean that by chance neither was able to attend an important meeting. The need for peer support and links back to wider user groups was also recognized:

What we could have done and probably could do now because we have got a bigger pool of patients who are showing this sort of interest to be involved, is maybe get a sort of patient focus group who would perhaps meet independently initially and come up with ideas for modelling the service for the representatives to present at the meetings.

[P3N]

Training was also seen as essential:

I think that a certain amount of training is essential because you are going to come across situations where you feel quite passionate about it but it's how you bring that over because if you start shouting about things then you just don't get taken on.

[U2N]

Finally, it was recognized by professionals as well as users that projects often started with good intentions for user involvement but that these plans were not always realized due to a variety of factors, in particular ‘so many conflicting priorities’. [P4S]

Ability to exercise voice

A key question for most users was ‘who sets the agenda?’ and whether user issues feature on the agenda. Where users felt they were able to get their issues on the agenda and to be listened to by the professionals, then they were generally satisfied with the process. In some cases, users and professionals agreed that their agenda was being heard:

The [user] rep, obviously he was excellent in respect of holding us to account. The things we said we would achieve in a certain time line he was very balanced in his view, “well you've said that, why haven't you done it?.

[P7N]

By contrast, where users did not feel their issues were on the agenda or that they were able to influence decisions, they were generally dissatisfied:

I think their aims were to involve patients, yes. I think that was a very clear desire for them to involve patients and the public, but when they started breaking it down into how they were going to go about deciding where to locate these additional [machines] it becomes clear almost straight away that the patients and the public really have very little influence on that or involvement in that.

[U4S]

Professionals commonly recognized the need to listen, but from users’ perspective, this recognition was not always carried through. The need was identified for support for professionals in learning to hear, support both from PPI facilitators and from training on involvement. There were several examples of professionals believing they had effectively involved and listened to users from the beginning of the commissioning process, whilst these users themselves expressed significant dissatisfaction that their voices were not being heard. In N2, for example, the users strongly wanted to include a non-institutional family room in the new service configuration, and professionals thought that this had been provided, but from the users’ perspective, the room did not provide the non-hospital environment they had envisaged.

Consistency and continuity

The consistency and continuity of user involvement was identified as an important factor in effective involvement. Referring to a ‘listening post’ exercise where users were trained and supported to interview other current chemotherapy patients about their experiences, one professional commented:

So it's [name 1] and [name 2] who are the representatives on the network generic group for chemotherapy and [name 2] was actually an interviewer on the listening posts so there's the sort of continuity running through.

[P2S]

This was most marked in N1 where one very experienced user was frequently asked to contribute to commissioning groups because of his acknowledged skill and expertise:

Because [name] has particular skills in getting involved in these very complex issues we overuse [name]. And the only danger there is we probably haven't developed some of the skills of the other patient representatives, if that makes sense, because we know that [name] has experience and you know he works well and just gets on with it and he has a lot of capacity and capability.

[P1N]

Several participants stressed the time it takes to develop and sustain user involvement:

Neither of us had a lot of time to put into the project and I think that was a big learning … always is; user involvement always takes longer than you ever perceive.

[P2S]

Consistency in professional leadership was a key factor as in one project where the continual change of commissioning lead meant learning about user involvement was not always passed on:

As I say we had four different leaders so … and within a space of less than a year that's an awful lot.

[P3S]

Where decisions are made

Users get involved in commissioning to influence decisions to improve services, but commissioning groups can feel rather removed from patients’ experience:

I think from the patient's perspective they see that we're commissioning and think, ‘you know I don't want to be involved in that, I'm involved in wanting it to improve clinical services.

[P1S]

This sense of detachment can be exacerbated by barriers such as the time it takes decisions to be made and frequent changes of commissioning personnel:

I think the biggest issue is time … time and changes in personnel within those PCTs that even a project which seems relatively short so far which is a year, there have been several change of personnel within those PCTs.

[P1S]

Any commissioning group can be an intimidating forum for users, and the process of how decisions are made may need explaining:

I think it was clear from people [users] who were actively engaged who were attending meetings that they were lost in how the system was working and how these decisions had been arrived at and unfortunately I couldn't explain it either.

[P4S]

Closing the feedback loop

Users consistently valued feedback on how their involvement had influenced commissioning decisions, but such feedback was not always forthcoming:

I think probably, especially now with hindsight for us, it's about keeping patients informed and making sure that they have feedback that would also sort of highlight a successful project which is something that due to a number of changes in leadership became a bit … it kind of fell off the … it didn't quite happen in our project.

[P3S]

Assessing impact

Users wanted to know that their involvement had led to changes that would have a positive impact on services and patient experiences, but this was recognized as difficult to demonstrate:

One of the problems with demonstrating the impact is that so much of it is not quantifiable in that when we had a discussion with our tumour group chairs around patient involvement, there was so much about the culture, about communication and how they make sure that those patients can really be involved in the discussions.

[P1S]

It was easier to demonstrate that activity had been carried out to elicit user views rather than that these views had led to concrete plans for commissioning improvements. Professionals in all the case studies were positive the user involvement had had an impact, but particularly so in N1 where there was strong agreement between the users and the professionals on the impact of the involvement:

We had a really strong service user input to the project that really was so energetic that I would say it played a pivotal role in actually driving the project forward and keeping the executive and the clinicians on their toes because what the service user representatives did in our group was they were extremely well briefed and they quickly established relationships with clinicians and senior managers and it very, very quickly got to a point where we all felt like we were … had a true partnership relationship, we felt like we were equals round the table but what was I think very interesting about some of the personalities involved was that they were not at all afraid of challenging and calling executives and clinicians to account.

[P6N]

Value of experience

Professionals and users equally expressed the importance of the lived experience of cancer that users brought to the commissioning process:

I hope they realize that I've got a voice of experience that I can use hopefully to other people's advantage.

[U1S]

Diversity

Overall, there was relatively little discussion of diversity. Ensuring diversity of the users involved in terms of different equality groups was an important principle for NCAT but not emphasized within the projects:

No I don't think we did [consider diversity], I think we talked, I think we might have been conscious of ethnic minorities and things but I think we just talked as patients as a whole really.

[U3N]

Often, concern focused on diversity in terms of cancer-specific groups (e.g. rarer cancers, palliative care) rather than on the more commonly specified areas of disadvantage in terms of ethnicity, socio-economic status, etc.

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Design
  6. Findings
  7. Discussion
  8. Conclusions
  9. Acknowledgements
  10. Source of funding
  11. Conflicts of interest
  12. References

Our findings on the impact of user involvement in cancer services commissioning are consistent with the wider literature on the potential and limitations of user involvement in service improvement,[1-3, 8-10] but highlight and further elucidate the specific issues for involvement in commissioning.[7, 11-13] We demonstrate a number of different impacts of user involvement on cancer services commissioning. There have most clearly been impacts on commissioning processes. In N1, users held clinicians and managers to account for the service improvements they promised; in S1, users helped shape how other users were consulted through listening posts. A second type of impact was upon professional learning with professionals in N2 in particular, but also in other networks, describing the value of user involvement to their learning about what users can contribute to service improvement. A third type of impact is that on the users themselves, for example their increased understanding and confidence in contributing to commissioning groups and service improvement processes. The fourth and most difficult type of impact to demonstrate is impact on outcomes, as found in recent systematic reviews on user involvement.[1, 2] Intermediate or organizational outcomes are easier to demonstrate than health outcomes, for example the establishment of a family room in N2. Demonstrating health outcomes was beyond the scope of this study. In the successful N1 user involvement process, the user involvement was so integral to a wider service improvement process that it would be very difficult to attribute improved health outcomes separately and specifically to the user involvement.

A key finding is that users and health professionals may have very different perceptions of the impact of user involvement in cancer services commissioning. This gap between professional and user perspectives on the impact of user involvement in commissioning is comparable to similar gaps in perceptions in other areas such as involvement in health-care research.[23] In three of our four case studies, some professionals believed the user involvement to have been more significant in decision making than the users involved believed. Notably, in some cases, professionals thought they had involved users in final decisions and/or fed back final commissioning decisions to the users, whilst the users themselves thought they had been left out of the final decision-making loop and had not been kept informed of developments. The different perceptions of users and professionals probably reflect the underlying power inequalities inherent in the different worlds they inhabit, with professionals frequently seeing each other and having informal ‘corridor chats’, telephone and email contact, whilst users are often much more distant from these informal sources of information and power.[24] Thus, professionals may think ‘everyone knows’ a commissioning decision despite it not having been formally communicated, whilst users may feel excluded from key information and decisions.

Research on effective involvement in other aspects of public services indicates that senior management ownership of involvement is critical.[2] This research suggests this is also true for involvement in commissioning; in the one case study (N1) where user involvement appeared most effective, the deputy director of the cancer network took an active personal interest in involvement and had a close working relationship with the user member of the commissioning group from his network. In the South of England, interventions by the network nurse director were important in keeping the focus on user involvement aspects of both projects.

Previous research similarly suggested the important support role of PPI officers or facilitators in the NHS.[25] Here, having the support of a PPI facilitator (whether working across a cancer network or with one of the local PCTs or NHS trusts) was a crucial resource. PPI facilitators were aware of the importance of careful preparation and realistic timescales to plan for effective user involvement, whereas other professionals sometimes tried to rush involvement to meet organizational timescales; in these cases, involvement was less successful. However, skilled user involvement facilitation was necessary but not sufficient. Other key professionals, in particular commissioning managers, also needed to understand user involvement and support from this wider group of professionals was more variable. Where a senior manager was committed to user involvement, their role was crucial to developing a supportive involvement process. Other professionals appeared to have less experience of user involvement, and in these cases, the processes of involvement were less satisfactory from the user perspective. This was particularly the case when leadership of projects changed hands several times with little or no handover, so that without a background in user involvement, new project leads often appeared not to fully understand the involvement aspects of projects. The process of learning to involve users takes time, but it is often difficult because of frequent changes of personnel and responsibilities in the NHS, a problem that is likely to get worse in the short to medium term.

These experiences indicated that to enable meaningful involvement, there are significant development needs for a wide range of professionals involved in commissioning. Professionals involved in the projects reported their steep learning curves and their beliefs that they would do involvement differently and better in future. In a period of rapid and continuing NHS organizational change, this suggests how much people learn by doing, how valuable such learning is and how future support for user involvement in commissioning needs to build in opportunities for reflective learning. In a time of financial constraints, when training resources are diminishing, the resource that users bring to professional learning should not be overlooked. Learning by doing is enhanced if it is carried out in partnership with users. And at a time of frequent professional personnel changes, users may stay engaged with commissioning processes for longer and so can provide invaluable continuity in learning.

Users also have development needs on how to work effectively within commissioning groups. The most effective user representative appeared to have brought his committee skills from his previous senior position in the private sector rather than developed them through cancer network support or training. But his situation appeared exceptional. Most users need time and support from training and from PPI facilitators to develop effective strategic skills. User involvement in commissioning is similar to involvement in other NHS leadership and governance roles, which, as Woodward and colleagues have demonstrated, requires significant resources for training and support.[26]

Users involved in commissioning were drawn from and supported by their partnership groups, emphasizing the importance of the continuity of the partnership group structures and relationships, a point that has also been highlighted in relationship to user involvement in cancer service delivery.[3, 10] Sustaining this continuity will be important at a time of significant change for cancer commissioning structures. In several instances, professionals never made clear to users what their role was intended to be in commissioning decisions, and so they were relatively unable to contribute effectively. Some users dropped out of commissioning processes because of this lack of clarity. For some users, there is a continuing gap between themselves and professionals in terms of status, familiarity with NHS structures, experience of committee work, confidence to speak, etc., which makes it challenging to speak effectively in commissioning group meetings.

A key resource for effective user involvement in commissioning underlying all of our case studies is time. User involvement is a long-term process and often is more challenging and takes more time than professionals initially anticipate. Professionals need to allow sufficient time for genuine involvement because time is needed for training, familiarization and relationship building. Poorly planned and executed involvement risks a vicious cycle of cynicism about future involvement; by contrast, well-planned and well-conducted involvement can lead to a virtuous cycle of valuing and therefore investing in involvement.[1, 2] Our case studies demonstrate the importance of early involvement, so that users are involved in the initial discussions of options before commissioning groups are formally established, as at that point critical decisions may already be made and the potential for genuine involvement narrowed.

Many users may not have the time and financial security to contribute as much as one user (U1N) did. Remuneration did not come up extensively in our interviews, but it was mentioned, with some users feeling that they should be remunerated for their time and expertise. Human and information resources were much more prominent than financial ones in the factors identified by informants as important to support user involvement in commissioning. Remuneration and wider non-monetary approaches to valuing user involvement remain a complex and contested issue in commissioning as more widely in health services user involvement.[27]

Conclusions

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Design
  6. Findings
  7. Discussion
  8. Conclusions
  9. Acknowledgements
  10. Source of funding
  11. Conflicts of interest
  12. References

User involvement in commissioning is an important, complex and under-researched area of health care, and this small-scale study has only been able to begin to build our understanding in the area of user involvement in cancer services commissioning. It is based on just four case studies in England, one of four jurisdictions within the UK, and took place before recent major policy changes to commissioning structures in the English NHS. We were only able to interview a limited number of stakeholders and observe user involvement in commissioning over a relatively short period of time. Thus, we must recognize the limitations to what we can claim from this study in terms of generalizability, both for cancer services commissioning within the UK and even more so for other developed economies with different health-care systems. Nonetheless, our findings are consistent with and contribute to a much wider literature on the strengths and weaknesses of user involvement in service improvement.[1, 4-11, 23] Relatively little has been written on user involvement in health-care purchasing internationally, but what little has been written is also consistent with our findings. For example, Figueras and colleagues have briefly considered the involvement of patients and the public in their study of purchasing in European health-care systems, pointed to the common limitations of existing mechanisms and identified the UK as one of the leading countries for such involvement.[28] Moreover, the factors that facilitate effective user involvement in English NHS commissioning are not specific to the UK context and apply equally to other countries that have introduced a ‘purchaser–provider’ split in health services such as New Zealand.[29] Fundamentally, where resources (in particular support from senior managers and PPI facilitators) have been devoted to supporting user involvement, then users have been able to find an effective voice in cancer services commissioning processes and decisions. Where those resources have been less well delivered, then the user voice has been less effective. These lessons could be applied in resource allocation decisions in most if not all developed economies’ health-care systems.

It is a truism that much research concludes by arguing that more research is needed, but that is undoubtedly the case here. As English health policy embarks on what are arguably the most radical set of organizational changes since the NHS was established in 1948, the role of users in decision making at every level of the newly emerging system will require detailed scrutiny. Many observers are fearful that the new market-based ‘choice’ mechanisms being put in place will sweep away the user involvement ‘voice’ mechanisms such as cancer network partnership groups that have developed over the last twenty years and which were key resources identified in this research.[30, 31] These changes will require detailed evaluation, and their impact in the specific case of user involvement in cancer services commissioning would be an appropriate test case of whether the market-orientated mechanisms being put in place by the Coalition government will indeed enable them to achieve their stated policy goal of putting the public, patients and their carers at the heart of cancer services.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Design
  6. Findings
  7. Discussion
  8. Conclusions
  9. Acknowledgements
  10. Source of funding
  11. Conflicts of interest
  12. References

We are very grateful for the participation of cancer service users and professionals in this research. We particularly appreciate the insights and generous contributions of the members of the National Cancer Action Team steering group. We thank Macmillan Cancer Support for generously funding this research.

Conflicts of interest

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Design
  6. Findings
  7. Discussion
  8. Conclusions
  9. Acknowledgements
  10. Source of funding
  11. Conflicts of interest
  12. References

None of the authors have a conflict of interest in this research or publication.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Design
  6. Findings
  7. Discussion
  8. Conclusions
  9. Acknowledgements
  10. Source of funding
  11. Conflicts of interest
  12. References
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