Patient participation groups

Nagraj, Shobhana; Gillam, Stephen

doi:10.1136/bmj.d2333

Cited by 8 publications

(10 citation statements)

References 3 publications

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“…Nevertheless, within Equity and Excellence, 7 PPGs were seen as a potentially important tool for ensuring the patient voice was heard within the proposed structures. 159 To incentivise GP practices, a 2-year Patient Participation DES was implemented in 2011. 141,160 There was evidence from all our case studies that this had had a significant impact on developing these groups, and was seen by some as the most important PPEI initiative at that time.…”

Section: Doi: 103310/hsdr02440mentioning

confidence: 99%

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

Peckham

Wilson

Williams

et al. 2014

Health Services and Delivery Research

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BackgroundSome 15 million people in England have a long-term condition (LTC) but there is concern about whether or not the NHS meets their needs. To address this, consecutive governments have developed policies aimed at improving service delivery and patient and public engagement and involvement (PPEI). There has been little research that examines the impact or benefit of PPEI in commissioning. This project explored the role and impact of PPEI in commissioning for people with LTCs. The research was undertaken during a period of substantial change in the English NHS, which enabled us to observe how the NHS reforms in England impacted on approaches to PPEI.AimThe aim was to examine how commissioners enable voice and engagement of people with LTCs and identify what impact this has on the commissioning process and pattern of services. Our specific objectives were to (1) critically analyse the relationship between the public/patient voice and the impact on the commissioning process; (2) determine how changes in the commissioning process reshape local services; (3) explore whether or not any such changes in services impact on the patient experience; (4) identify if and how commissioners enable the voice and engagement of people with LTCs; and (5) identify how patient groups/patient representatives get their voice heard and what mechanisms and processes patients and the public use to make their voice heard.MethodsWe used a case study design examining the experience of PPEI in three LTC groups – diabetes, rheumatoid arthritis and neurological conditions – through three in-depth case studies. Our approach involved reviewing practice across the UK and then focusing on three geographical areas to examine practices of commissioning health care for people with LTCs, approaches to PPEI, patterns of services for people with LTCs and the activities of local patient and voluntary organisations for people with LTCs. The research had five phases and involved participatory and interactive methods of data collection and analysis.FindingsWe identified two key areas where improvements to practice in relation to PPEI can be made. The first relates 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 fragility of PPEI activities, sufficient resources need to be invested in developing shared understandings and sustaining relationships and infrastructures. The second area of action relates to the process for PPEI and how it should be undertaken.ConclusionAction needs to be taken by organisations at both national and local levels. PPEI is a circular process and, in itself, extremely fragile. This circular process can be ‘virtuous’– successful engagement leads to improved involvement and outcomes. However, where involvement is tokenistic or ends, patients and the public become disengaged and less involved and can be described as a ‘vicious circle’. In addition, we identified a number of key methodological issues and areas for further research that should be considered by research funders and researchers undertaking research in the area of PPEI, including a need for research on PPEI with young people.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Doi: 103310/hsdr02440mentioning

confidence: 99%

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

Peckham

Wilson

Williams

et al. 2014

Health Services and Delivery Research

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“…PRGs are bound by the Patient Participation DES contract rules, with concerns of a more limited remit focusing exclusively on the six steps identified within the DES contract. 7 There are a number of issues related to the typologies identified (Figure 2). For example, a practice-led, virtual group may focus on customer feedback; however, this can dilute patient experience to overall satisfaction, which may distort particular areas meriting improvement.…”

Section: Discussionmentioning

confidence: 99%

“…The National Association for Patient Participation (NAPP) believe that over 75% of general practices in England now have a PRG, 7 with groups still developing. Findings from CS1 data would suggest that financial incentive and the 'must-do' nature of PPIE in general practice has had a direct impact on the increased proliferation of PRGs.…”

Section: Discussionmentioning

confidence: 99%

“…6,7 Although PPGs were slow to develop, through support from a national member association 8 and campaign, 9 around 40% of all English GP practices had an established group by 2009. However, previous research findings identified a number of concerns regarding these groups, including equity of access, uneven distribution, unrepresentative membership, diversity of purpose, variation, and difficulties around assessing cost and benefit.…”

Section: Introductionmentioning

confidence: 99%

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Developing patient reference groups within general practice: a mixed-methods study

et al. 2015

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BackgroundClinical commissioning groups (CCGs) are required to demonstrate meaningful patient and public engagement and involvement (PPEI). Recent health service reforms have included financial incentives for general practices to develop patient reference groups (PRGs). AimTo explore the impact of the patient participation direct enhanced service (DES) on development of PRGs, the influence of PRGs on decision making within general practice, and their interface with CCGs. Design and settingA mixed-methods approach within three case study sites in England. MethodThree case study sites were tracked for 18 months as part of an evaluation of PPEI in commissioning. A sub-study focused on PRGs utilising documentary and web-based analysis; results were mapped against findings of the main study. ResultsEvidence highlighted variations in the establishment of PRGs, with the number of active PRGs via practice websites ranging from 27% to 93%. Such groups were given a number of descriptions such as patient reference groups, patient participation groups, and patient forums. Data analysis highlighted that the mode of operation varied between virtual and tangible groups and whether they were GP-or patientled, such analysis enabled the construction of a typology of PRGs. Evidence reviewed suggested that groups functioned within parameters of the DES with activities limited to practice level. Data analysis highlighted a lack of strategic vision in relation to such groups, particularly their role within an overall patient and PPEI framework). ConclusionFindings identified diversity in the operationalisation of PRGs. Their development does not appear linked to a strategic vision or overall PPEI framework. Although local pragmatic issues are important to patients, GPs must ensure that PRGs develop strategic direction if health reforms are to be addressed. Keywordsgeneral practice; incentives; patient groups; typology. Developing patient reference groups within general practice:a mixed-methods study

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“…6 This diversity makes it harder to assess their impact. 7 Several studies have identified practical challenges in establishing and sustaining groups. 6 8-10 They face recruitment difficulties and membership is seldom representative of the patient population, in terms of age and ethnicity.…”

Section: What We Know About Patient Participation Groupsmentioning

confidence: 99%