Carole Mockford

Mapping the impact of patient and public involvement on health and social care research: a systematic review

There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research.

The impact of patient and public involvement on UK NHS health care: a systematic review.

PURPOSE Patient and public involvement (PPI) has become an integral part of health care with its emphasis on including and empowering individuals and communities in the shaping of health and social care services. The aims of this study were to identify the impact of PPI on UK National Health Service (NHS) healthcare services and to identify the economic cost. It also examined how PPI is being defined, theorized and conceptualized, and how the impact of PPI is captured or measured. DATA SOURCES Seventeen key online databases and websites were searched, e.g. Medline and the Kings Fund. STUDY SELECTION UK studies from 1997 to 2009 which included service user involvement in NHS healthcare services. Date extraction Key themes were identified and a narrative analysis was undertaken. RESULTS OF DATA SYNTHESIS The review indicates that PPI has a range of impacts on healthcare services. There is little evidence of any economic analysis of the costs involved. A key limitation of the PPI evidence base is the poor quality of reporting impact. Few studies define PPI, there is little theoretical underpinning or conceptualization reported, there is an absence of robust measurement of impact and descriptive evidence lacked detail. CONCLUSION There is a need for significant development of the PPI evidence base particularly around guidance for the reporting of user activity and impact. The evidence base needs to be significantly strengthened to ensure the full impact of involving service users in NHS healthcare services is fully understood.

The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research.

OBJECTIVES The aim of this study was to develop the GRIPP (Guidance for Reporting Involvement of Patients and Public) checklist to enhance the quality of PPI reporting. METHODS Thematic analysis was used to synthesize key issues relating to patient and public involvement (PPI) identified in the PIRICOM and PAPIRIS systematic reviews. These issues informed the development of the GRIPP checklist. RESULTS The key issues identified included limited conceptualization of PPI, poor quality of methods reporting, unclear content validity of studies, poor reporting of context and process, enormous variability in the way impact is reported, little formal evaluation of the quality of involvement, limited focus on negative impacts, and little robust measurement of impact. The GRIPP checklist addresses these key issues. CONCLUSION The reporting of patient and public involvement in health research needs significant enhancement. The GRIPP checklist represents the first international attempt to enhance the quality of PPI reporting. Better reporting will strengthen the PPI evidence-base and so enable more effective evaluation of what PPI works, for whom, in what circumstances and why.

Role of home visiting in improving parenting and health in families at risk of abuse and neglect: results of a multicentre randomised controlled trial and economic evaluation

Objectives: To evaluate the effectiveness and cost effectiveness of an intensive home visiting programme in improving outcomes for vulnerable families. Design: Multicentre randomised controlled trial in which eligible women were allocated to receive home visiting (n = 67) or standard services (n = 64). Incremental cost analysis. Setting: 40 general practitioner practices across 2 counties in the UK. Participants: 131 vulnerable pregnant women. Intervention: Selected health visitors were trained in the Family Partnership Model to provide a weekly home visiting service from 6 months antenatally to 12 months postnatally. Main outcome measures: Mother–child interaction, maternal psychological health attitudes and behaviour, infant functioning and development, and risk of neglect or abuse. Results: At 12 months, differences favouring the home-visited group were observed on an independent assessment of maternal sensitivity (p<0.04) and infant cooperativeness (p<0.02). No differences were identified on any other measures. A non-significant increase in the likelihood of intervention group infants being the subject of child protection proceedings, or being removed from the home, and one death in the control group were found. The mean incremental cost per infant of the home visiting intervention was £3246 (bootstrapped 95% CI for the difference £1645–4803). Conclusion: This intervention may have the potential to improve parenting and increase the identification of infants at risk of abuse and neglect in vulnerable families. Further investigation is needed, along with long-term follow-up to assess possible sleeper effects.

A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities

ObjectivePatient and public involvement (PPI) in research has expanded nationally and internationally over the last decade, and recently there has been significant attention given to understanding its impact on research. Less attention has been given to the impact of PPI on the people involved, yet it has been shown that the success of PPI in research can be reliant on the processes of engagement between these individuals and communities. This paper therefore critically explores the impact of PPI on service users, researchers and communities involved in health and social care research.Data SourcesSearches were undertaken from 1995 to April 2012 in the electronic databases MEDLINE, EMBASE, PsycINFO, Cochrane library, CINAHL, HMIC and HELMIS. Searches were undertaken for grey literature using the databases InvoNet and NHS Evidence.Study SelectionStudies were included if they included the impact of PPI on individual service users, researchers or communities under research. Studies were excluded if they were in a foreign language (unless they were deemed critical to the systematic review) or were in children and adolescent services.Study AppraisalData were extracted using a narrative synthesis, and quality was assessed using the Critical Appraisal Skills Programme.Main ResultsService users reported feeling empowered and valued, gaining confidence and life skills. Researchers developed a greater understanding and insight into their research area, gaining respect and a good rapport with the community. The community involved in research became more aware and knowledgeable about their condition. However, lack of preparation and training led some service users to feel unable to contribute to the research, while other service users and communities reported feeling overburdened with the work involved. Researchers reported difficulties in incorporating PPI in meaningful ways due to lack of money and time.ConclusionThis is the first international systematic review to focus on the impact of PPI on the people involved in the process. The beneficial and challenging impacts reported highlight the importance of optimising the context and processes of involvement, so creating the potential for PPI to impact positively on the research itself.

Improving mental health through parenting programmes: block randomised controlled trial

Aims: To assess the effectiveness of a parenting programme, delivered by health visitors in primary care, in improving the mental health of children and their parents among a representative general practice population. Methods: Parents of children aged 2–8 years who scored in the upper 50% on a behaviour inventory were randomised to the Webster-Stratton 10 week parenting programme delivered by trained health visitors, or no intervention. Main outcome measures were the Eyberg Child Behaviour Inventory and the Goodman Strengths and Difficulties Questionnaire to measure child behaviour, and the General Health Questionnaire, Abidin’s Parenting Stress Index, and Rosenberg’s Self Esteem Scale to measure parents’ mental health. These outcomes were measured before and immediately after the intervention, and at six months follow up. Results: The intervention was more effective at improving some aspects of the children’s mental health, notably conduct problems, than the no intervention control condition. The Goodman conduct problem score was reduced at immediate and six month follow up, and the Eyberg Child Behaviour Inventory was reduced at six months. The intervention also had a short term impact on social dysfunction among parents. These benefits were seen among families with children scoring in the clinical range for behaviour problems and also among children scoring in the non-clinical (normal) range. Conclusion: This intervention could make a useful contribution to the prevention of child behaviour problems and to mental health promotion in primary care.

Measuring the impact of patient and public involvement: the need for an evidence base

Over the last decade there has been increasing emphasis on patient and public involvement in different aspects of healthcare activity in the UK and internationally [1, 2]. The importance of involving patients and the public in the re-design of a patient-focused healthcare system has become emphasized and strengthened by recent international health policy [3] and the implementation of recent UK legislation (e.g. Local Involvement Networks [4]). Equally, the imperative of patient and public involvement as a central feature of health services research is being emphasized by its integral role in many research funding programmes and initiatives in the UK (e.g. the Health Technologies Assessment [5]). Although the UK has experienced extensive patient and public involvement activity in the National Health Service, the international research evidence base underpinning this activity remains partial and lacks coherence. A range of difficulties exist, including poor conceptualization, variable and partial attempts at measurement, and the limited attention that has been placed on evaluating the impact or outcome of involvement [6,7]. Research in this area has often been found to be of poor quality [ …

A Review: carers, MND and service provision.

Carers of people with MND may experience changes to their health and lifestyle. Statutory and voluntary organizations are able to support the carer in various ways. This review investigates the personal impact on carers and their experiences of service provision. A systematic search of online and grey literature was made for the period 1994–2004. Thirty‐two key texts were retrieved and a narrative synthesis conducted. The main themes were: 1) Impact on carer: general health, emotional state, life satisfaction, socio‐economic concerns, relationships, and protective factors; 2) Experience of service provision: primary care, health professionals, social care, written information, and voluntary organizations. There is a paucity of written documentation on the experience of assisting someone with MND. Data collected are diverse and sometimes contradictory. Sample sizes are often small and generalization difficult. Main findings show that maintenance of social support, activities, and a positive outlook may lessen the chance of ill health arising from long hours spent caring, and having a named coordinator may assist with access to resources, and provide practical and emotional support during and after the caring role. Carers may become ill themselves unless adequate support is given to them throughout the course of the disease.

FIRE (Facilitating Implementation of Research Evidence): a study protocol.

BackgroundResearch evidence underpins best practice, but is not always used in healthcare. The Promoting Action on Research Implementation in Health Services (PARIHS) framework suggests that the nature of evidence, the context in which it is used, and whether those trying to use evidence are helped (or facilitated) affect the use of evidence. Urinary incontinence has a major effect on quality of life of older people, has a high prevalence, and is a key priority within European health and social care policy. Improving continence care has the potential to improve the quality of life for older people and reduce the costs associated with providing incontinence aids.ObjectivesThis study aims to advance understanding about the contribution facilitation can make to implementing research findings into practice via: extending current knowledge of facilitation as a process for translating research evidence into practice; evaluating the feasibility, effectiveness, and cost-effectiveness of two different models of facilitation in promoting the uptake of research evidence on continence management; assessing the impact of contextual factors on the processes and outcomes of implementation; and implementing a pro-active knowledge transfer and dissemination strategy to diffuse study findings to a wide policy and practice community.Setting and sampleFour European countries, each with six long-term nursing care sites (total 24 sites) for people aged 60 years and over with documented urinary incontinenceMethods and designPragmatic randomised controlled trial with three arms (standard dissemination and two different programmes of facilitation), with embedded process and economic evaluation. The primary outcome is compliance with the continence recommendations. Secondary outcomes include proportion of residents with incontinence, incidence of incontinence-related dermatitis, urinary tract infections, and quality of life. Outcomes are assessed at baseline, then at 6, 12, 18, and 24 months after the start of the facilitation interventions. Detailed contextual and process data are collected throughout, using interviews with staff, residents and next of kin, observations, assessment of context using the Alberta Context Tool, and documentary evidence. A realistic evaluation framework is used to develop explanatory theory about what works for whom in what circumstances.Trial registrationCurrent Controlled Trials ISRCTN11598502.

Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact

While patient and public involvement (PPI) in health and social care research has progressed successfully in the last decade, a range of difficulties with the evidence base exist, including poor understanding of the concept of impact, limited theorization and an absence of quantitative impact measurement. In this paper, we argue that a paradigm change towards robust measurement of the impact of involvement in research is needed to complement qualitative explorations. We argue that service users should be collaboratively involved in the conceptualization, theorization and development of instruments to measure PPI impact. We consider the key advantages measurement would bring in strengthening the PPI evidence base through a greater understanding of what works, for whom, in what circumstances and why.