Commissioning for long-term conditions: hearing the voice of and engaging users a qualitative multiple case study

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1 Commissioning for ong-term conditions: hearing the voice of and engaging users a quaitative mutipe case study Stephen Peckham, 1,2 * Patricia Wison, 3 Lorraine Wiiams, 2 Jane Smiddy, 3 Say Kenda, 3 Fiona Brooks, 3 Joanne Reay, 4 Dougas Smawood 5 and Linda Boomfied 3 1 Centre for Heath Services Studies, University of Kent, Kent, UK 2 Department of Heath Services Research and Poicy, London Schoo of Hygiene & Tropica Medicine, London, UK 3 Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfied, UK 4 Nationa Institute for Heath Research Management Feow, West Essex Primary Care Trust, Epping, UK 5 Patient and Pubic Engagement and Invovement Consutant, NHS East of Engand, UK *Corresponding author Decared competing interests of authors: none Pubished November 2014 DOI: /hsdr02440 Scientific summary Commissioning for ong-term conditions Heath Services and Deivery Research 2014; Vo. 2: No. 44 DOI: /hsdr02440 NIHR Journas Library

2 SCIENTIFIC SUMMARY: COMMISSIONING FOR LONG-TERM CONDITIONS Scientific summary Background It is estimated that some 15 miion peope in Engand have a ong-term condition (LTC) and that this number wi continue to increase. Peope with a LTC have, to varying degrees, a ong-standing reationship with oca heath services. Concern about whether or not the NHS meets the needs of peope with LTCs emerged in the 1990s and consecutive governments have deveoped poicies aimed at improving service deivery and aso patient and pubic engagement and invovement (PPEI). Both the current and the previous government emphasised the need to improve commissioning for peope with LTCs, and PPEI in commissioning was seen as a key poicy priority. However, there has been itte research that examines the impact or benefit of PPEI in commissioning. This project was designed to expore the roe and impact of PPEI in commissioning for peope with LTCs. Our origina focus was on the activities of primary care trusts (PCTs) as commissioners of heath care for peope with LTCs. However, from the very beginning of the research period, there were substantia changes to the commissioning structures in the Engish NHS, with PCTs merging into custers. With the change of government in 2010, the extent and rate of change acceerated, with the aboition of PCTs and deveopment of a new commissioning structure initiay outined in the White Paper Equity and Exceence: Liberating the NHS, pubished in Juy From January 2011, new Pathfinder genera practitioner (GP)-ed commissioning groups began to deveop, eading, eventuay, to the estabishment during 2012 of new Cinica Commissioning Groups (CCGs). These CCGs took over statutory responsibiity for some 60% of the NHS budget from Apri 2013 to commission oca community and hospita services. At the same time, PCT custers evoved into commissioning support units and NHS Engand was estabished with responsibiity for 40% of the NHS budget, with a specific emphasis on speciaist services, nationa GP, ophthamic, pharmaceutica and denta contracts, prison heath, armed forces and a number of nationa pubic heath programmes. Pubic heath, incuding the commissioning of pubic heath services, moved from PCTs to oca authorities. In addition, new structures for PPEI were introduced. This presented chaenges for the conduct of the research given the organisationa turbuence but provided an opportunity to observe the impact of these changes on PPEI in reation to commissioning services for peope with LTCs. Aims The project s initia aim was to examine how commissioners enabe the voice and engagement of peope with LTCs and identify what impact this has on the commissioning process and pattern of services. A key outcome of the research was to provide guidance for commissioners on the skis and expertise needed by different commissioners, what actions are most ikey to ead to responsive services and the most effective mechanisms and processes for active and engaged commissioning for peope with LTCs. Our specific objectives were to: 1. criticay anayse the reationship between the pubic/patient voice and the impact on the commissioning process 2. determine how changes in the commissioning process reshape oca services 3. expore whether or not any such changes in services impact on the patient experience 4. identify if and how commissioners enabe the voice and engagement of peope with LTCs 5. identify how patient groups/patient representatives get their voice heard and what mechanisms and processes patients and the pubic use to make their voice heard. ii NIHR Journas Library

3 HEALTH SERVICES AND DELIVERY RESEARCH 2014 VOL. 2 NO. 44 (SCIENTIFIC SUMMARY) The research was undertaken during a period of substantia change in the Engish NHS which enabed us to observe how the NHS reforms in Engand impacted on approaches to PPEI. Whie this did not provide an anaysis of the position of PPEI in CCGs, once estabished in Apri 2013 it did provide usefu indications of how PPEI was being deveoped, and the priority being paced on PPEI, during the deveopment and authorisation stages of CCGs. Methods Given the compexity of studying PPEI in commissioning, we used a case study design in order to provide an in-depth, rich anaysis in seected areas. The research examined three experiences of PPEI in three LTC groups diabetes, rheumatoid arthritis and neuroogica conditions through three in-depth case studies. Our approach invoved reviewing practice across the UK and then focusing on three geographica areas to examine practices of commissioning and purchasing heath care for peope with LTCs, approaches to patient and pubic invovement (PPI), patterns of services for peope with LTCs and the activities of oca patient and vountary organisations for peope with LTCs. The research had five phases and invoved participatory and interactive methods of data coection. Methods of data coection comprised documentary anaysis, participant workshops, observation of meetings, focus groups and interviews, and the coection of data on service use and patterns of services in the three ocaities. We were abe to invove a wide range of participants and respondents in our study from patient groups, statutory and non-statutory heath-care providers, heath-care commissioners, cinicians, patient representatives and carers and oca authority officers and poiticians. Foowing an initia anaysis and synthesis of our data, we presented our findings in a summative workshop and seected a number of exempars which were assessed for their potentia to provide patient benefit by an expert reference group. Resuts The shift in guidance and poicy from PPI to patient and pubic engagement (PPE) seems to be inked with a periphiization of PPEI activity. We found a greater emphasis on concepts of communication rather than active invovement within CCG deveopments. PPEI was generay not a key issue in authorisation, the process by which CCGs are assessed against a series of criteria in order to become estabished commissioning organisations. Whie many CCGs reported that PPEI was a key priority, there was itte evidence in authorisation documentation about PPEI and we did not observe a significant degree of PPEI activity in CCGs. In genera, we found that at a CCG eve PPEI is aso becoming a periphera activity. Despite this, respondents in our study aso identified the deveopment of CCGs as an opportunity to innovate in reation to PPEI but we found itte evidence to support such innovation, athough at the time of this research CCGs were very new organisations. In addition to changes in rhetoric, we found that there were different understandings of invovement in terms of how it was understood and what is was for between commissioners, providers, patients and the pubic. It is important that common understandings are agreed if effective PPEI is to be deveoped. Case study 1 had a strong pedigree of PPI initiatives but there were few notabe exampes of service user voice having a major impact on service deivery. Whie a commitment to PPEI transferred to the CCG board, this intent did not extend to a GPs. The empoyment of a dedicated project ead to deveop the PPEI strategy demonstrated a commitment, but there was a genera feeing that the aims of the strategy woud take onger than anticipated to achieve. Within the time frame of this study, it was too eary to be abe to fuy evauate whether or not the service user voice was being heard and responded to in the CCG decision-making processes. Case study 2 had a ong-standing tradition of PPEI initiatives, with a strong emphasis on partnership working. There were a number of exampes of service user voice infuencing service deveopment and deivery, but we were not abe to determine the impact of such invovement. The deveopment Queen s Printer and Controer of HMSO This work was produced by Peckham et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. iii

4 SCIENTIFIC SUMMARY: COMMISSIONING FOR LONG-TERM CONDITIONS and expansion of patient participation groups was evident in genera practice during the research period. During the data coection period, the CCG had formuated ony a PPEI draft pan, rather than a strategy, with a GP-ead rather than a dedicated appointment. There were a number of potentia PPEI vehices within the new organisation, such as a membership scheme and patient engagement pane, but it was uncear how these structures woud function within the organisation or how PPEI woud feed into service deveopment and overa decision-making. Case study 3 did not have a marked history of PPEI within the PCT, athough there were a variety of different methods used to invove and engage with their community. There was itte evidence of much meaningfu engagement, particuary within primary care, an area of increasing significance for peope with LTCs. Some efforts were made to ensure that services were panned to meet the needs of particuar sections of the community but these faied, due, in part, to poor PPEI panning and execution. The CCG is better paced to ensure that PPEI is firmy embedded in a areas of commissioning decisions in the future and new staff and structures are panned to enabe this to happen. There is a strong commitment and wi make a difference, but within the time frame of this project it was not possibe to assess any impact. Given the compexities and range of PPEI and heath-care commissioning, it was not possibe to demonstrate whether or not PPEI was being done we in our case studies. In particuar, assessment of process was hampered by the continuing structura and organisationa changes taking pace within the Engish NHS during the period of the research. We did identify some positive impacts in terms of improvements in process and aso to initiatives that woud ead to patient benefit. However, our findings suggest that the priorities for heath care are predominanty driven by nationa and oca poicy priorities and cinica priorities. PPEI tends to be framed by these priorities rather than patient and pubic voices being abe to infuence the core concerns and priorities. It is interesting to note that the initiative that we identified as being most strongy driven by ay peope and aso rated most highy by the expert reference group was outside the heath-care sector, athough having substantia patient benefit. This initiative strugged to gain and sustain reevant support. The need for sustainabiity was a constant theme that emerged in our research. There was frustration about constanty changing NHS structures which had an enormous negative impact on PPEI and the contribution that patients and the pubic were making. In particuar, there was a oss of organisationa memory with the organisationa restructuring and staff changes, causing significant knowedge gaps and disruption in reationships. Future deveopment of PPEI is dependent on training and deveopment, which is ikey to remain under-resourced. Our research aso demonstrates that young peope and aduts have different experiences and perceptions. We found that, for aduts, engagement and experience provide the key underpinning for deveoping invovement in decision processes. For young peope, however, the combination of experience and engagement tend to ead to a withdrawa of interest. Further research is needed with young peope to understand the reasons for this and how young peope s invovement can be supported and sustained. We did find exampes of effective PPEI that had positivey infuenced agencies. However, much PPEI continues to be undertaken in sios, with itte sharing of resources, processes or experience, and there is a need for improved networking and sharing if PPEI is to be effective and beneficia. Concusions The findings set out in this report identify some key areas where improvements to practice in reation to PPEI can be made. In particuar, these findings point to two broad areas of action. The first reates to the framework or infrastructure arrangements for PPEI and how PPEI can be supported in the NHS and other organisations. To combat short-termism and the fragiity of PPEI activities, sufficient resources need iv NIHR Journas Library

5 HEALTH SERVICES AND DELIVERY RESEARCH 2014 VOL. 2 NO. 44 (SCIENTIFIC SUMMARY) to be invested in sustaining reationships and infrastructures incuding training and sharing experience across sectors. Deveoping a shared anguage and understanding is aso important. The second area of action reates to the process for PPEI and how it shoud be undertaken. These action areas are reevant to nationa organisations (and the new regiona structures and organisations deveoping within the reformed Engish NHS) and to oca commissioners (the CCGs) and service providers. PPEI is not a inear process. There is a circuar process and this is, in itsef, extremey fragie. This circuar process can be virtuous, in that good engagement can ead to improved invovement if it is not tokenistic or has sustainabiity. However, where invovement is tokenistic or ends, patients and the pubic become disengaged and ess invoved, and this can be described as a vicious circe. We identified three areas that frame approaches to PPEI and provide an anaytica framework for evauating PPEI within the context of commissioning. Deveoping approaches to PPEI needs to be framed by asking whether or not it is mora PPEI as a right for the tax-paying citizen in a democracy, and the mora argument of nothing about me without me ; whether or not it is approached methodoogicay PPEI as a too for quaity improvement, improved patient safety and increased efficiency; and how the poicy imperative is enacted PPEI undertaken as a poicy imperative. This provides an approach that begins to hep shape a potentia evauative frame for PPEI by asking, for exampe, whether or not everyone has a voice, if quaity has been improved, or if PPEI has been impemented as per poicy. In addition, the research identified a number of key methodoogica issues and areas for further research that shoud be considered by research funders and researchers undertaking research in the area of PPEI. In particuar, we identified key chaenges for undertaking research on PPEI with young peope and recommend further specific projects with younger peope on examining PPEI in heath care. Impications for nationa organisations Nationa agencies shoud ensure that training and deveopment programmes on PPEI for commissioners, providers and patients and the pubic are impemented; these can be deivered nationay or support oca training and deveopment initiatives. Nationa organisations such as NHS Engand and Nationa Heathwatch need to deveop monitoring criteria for PPEI. There needs to be carity about terminoogy with agencies being specific about the meaning of terms such as engagement and invovement. These terms carry different meanings to different peope. Nationa and regiona agencies need to deveop and support a sustainabe environment for PPEI in which oca reationships can deveop and fourish. At a regiona eve, organisations need to ensure that resources and structures for PPEI are shared, for exampe supporting networks, sharing resources and jointy supporting infrastructures. Impications for heath-care commissioners and providers Commissioners need to embed PPEI throughout the commissioning cyce. Commissioners need to understand that strategies for engagement, whie important, are not substitutes for invovement; this is a contributing stage but does not constitute active participation. Commissioners and providers need to agree measurabe outcomes of PPEI with patients and pubic, and evauate these annuay. Commissioners and providers need to work together on PPEI as providers have more opportunities for engaging with patients and carers. Commissioners, providers, patients and the pubic shoud work together to deveop a shared vision of PPEI. Agencies shoud participate in existing networks and forums, such as participation in a neuroogica network. Agencies shoud co-operate on the mapping of oca PPEI. Queen s Printer and Controer of HMSO This work was produced by Peckham et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. v

6 SCIENTIFIC SUMMARY: COMMISSIONING FOR LONG-TERM CONDITIONS Whie PPEI requires an organisation-wide approach, organisations require dedicated resources (staff, funding) for PPEI. Commissioners and providers shoud deveop a shared framework for evauating PPEI and its outcomes, for exampe in reation to improved patient experience and safety. Indicative data shoud be coected to understand the oca contextua enabers and barriers to impementing PPEI. PPEI processes and structures shoud enabe the voice of the pubic who are the most vunerabe, such as peope with ong-term heath conditions (menta heath probems, dementia, earning disabiities) or ong-term socioeconomic conditions (homeess peope, traveer groups, sex workers, refugees, asyum seekers, prisoners/ex-offenders, peope iving with persistent poverty/ower eves of education), and those from back and ethnic minority communities. A highy visibe and accessibe main point of contact for the pubic shoud be provided, focusing on reationa integration such as the fostering of reationships and trust, and consistenty providing timey and informative feedback. Recommendations for future research Our research suggests that further research is urgenty required to examine how PPEI is being deveoped within the reformed Engish NHS. Our research has demonstrated the fragiity of PPEI and how reorganisation can impact negativey on PPEI processes and deveopments. Research on PPEI among young peope and chidren requires dedicated research projects where a resources and activity are focused on accessing, invoving and supporting young peope. This project has demonstrated the vaue of inking research between simiar research projects in this case inking with the Department of Heath Poicy Research Unit in Commissioning and the Heathcare System research on CCGs and aowing the pooing of data. This project has demonstrated the vaue of participative and iterative methods for investigating PPEI and researchers shoud be encouraged to utiise simiar methods in future studies. There is sti a need for research to measure the potentia economic costs/benefits of PPEI. Funding Funding for this study was provided by the Heath Services and Deivery Research programme of the Nationa Institute for Heath Research. vi NIHR Journas Library

7 Heath Services and Deivery Research ISSN (Print) ISSN (Onine) This journa is a member of and subscribes to the principes of the Committee on Pubication Ethics (COPE) ( Editoria contact: The fu HS&DR archive is freey avaiabe to view onine at Print-on-demand copies can be purchased from the report pages of the NIHR Journas Library website: Criteria for incusion in the Heath Services and Deivery Research journa Reports are pubished in Heath Services and Deivery Research (HS&DR) if (1) they have resuted from work for the HS&DR programme or programmes which preceded the HS&DR programme, and (2) they are of a sufficienty high scientific quaity as assessed by the reviewers and editors. HS&DR programme The Heath Services and Deivery Research (HS&DR) programme, part of the Nationa Institute for Heath Research (NIHR), was estabished to fund a broad range of research. It combines the strengths and contributions of two previous NIHR research programmes: the Heath Services Research (HSR) programme and the Service Deivery and Organisation (SDO) programme, which were merged in January The HS&DR programme aims to produce rigorous and reevant evidence on the quaity, access and organisation of heath services incuding costs and outcomes, as we as research on impementation. The programme wi enhance the strategic focus on research that matters to the NHS and is keen to support ambitious evauative research to improve heath services. For more information about the HS&DR programme pease visit the website: This report The research reported in this issue of the journa was funded by the HS&DR programme or one of its proceeding programmes as project number 08/1806/261. The contractua start date was in November The fina report began editoria review in August 2013 and was accepted for pubication in March The authors have been whoy responsibe for a data coection, anaysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors report and woud ike to thank the reviewers for their constructive comments on the fina report document. However, they do not accept iabiity for damages or osses arising from materia pubished in this report. This report presents independent research funded by the Nationa Institute for Heath Research (NIHR). The views and opinions expressed by authors in this pubication are those of the authors and do not necessariy refect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Heath. If there are verbatim quotations incuded in this pubication the views and opinions expressed by the interviewees are those of the interviewees and do not necessariy refect those of the authors, those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Heath. Queen s Printer and Controer of HMSO This work was produced by Peckham et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. Pubished by the NIHR Journas Library ( produced by Prepress Projects Ltd, Perth, Scotand (

8 Heath Services and Deivery Research Editor-in-Chief Professor Ray Fitzpatrick Professor of Pubic Heath and Primary Care, University of Oxford, UK NIHR Journas Library Editor-in-Chief Professor Tom Waey Director, NIHR Evauation, Trias and Studies and Director of the HTA Programme, UK NIHR Journas Library Editors Professor Ken Stein Chair of HTA Editoria Board and Professor of Pubic Heath, University of Exeter Medica Schoo, UK Professor Andree Le May Chair of NIHR Journas Library Editoria Group (EME, HS&DR, PGfAR, PHR journas) Dr Martin Ashton-Key Consutant in Pubic Heath Medicine/Consutant Advisor, NETSCC, UK Professor Matthias Beck Chair in Pubic Sector Management and Subject Leader (Management Group), Queen s University Management Schoo, Queen s University Befast, UK Professor Aieen Carke Professor of Pubic Heath and Heath Services Research, Warwick Medica Schoo, University of Warwick, UK Dr Tessa Criy Director, Crysta Bue Consuting Ltd, UK Dr Peter Davidson Director of NETSCC, HTA, UK Ms Tara Lamont Scientific Advisor, NETSCC, UK Professor Eaine McCo Director, Newcaste Cinica Trias Unit, Institute of Heath and Society, Newcaste University, UK Professor Wiiam McGuire Professor of Chid Heath, Hu York Medica Schoo, University of York, UK Professor Geoffrey Meads Professor of Heath Sciences Research, Facuty of Education, University of Winchester, UK Professor Jane Norman Professor of Materna and Feta Heath, University of Edinburgh, UK Professor John Powe Consutant Cinica Adviser, Nationa Institute for Heath and Care Exceence (NICE), UK Professor James Raftery Professor of Heath Technoogy Assessment, Wessex Institute, Facuty of Medicine, University of Southampton, UK Dr Rob Riemsma Reviews Manager, Keijnen Systematic Reviews Ltd, UK Professor Heen Roberts Professor of Chid Heath Research, UCL Institute of Chid Heath, UK Professor Heen Snooks Professor of Heath Services Research, Institute of Life Science, Coege of Medicine, Swansea University, UK Pease visit the website for a ist of members of the NIHR Journas Library Board: Editoria contact:

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