The value of involving patients and public in health services research and evaluation: a qualitative study.

BACKGROUND: Public and Patient Involvement, Engagement and Participation research encompasses working with patients/service users (people with a medical condition receiving health service treatment), public members, caregivers and communities (who use services or care for patients). The Partner Priority Programme (PPP) was developed by the National Health Service [NHS] and National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care [NIHR CLAHRC] NWC to share information and experience on evaluating new services being offered to patients that were seeking to reduce health inequalities, improve people's health and wellbeing and reduce emergency hospital admissions. This paper seeks to explore an approach developed for involving the public as equal partners within the evaluation and decision-making processes of health and social care services research. The aim of this study was to identify how public advisors were included, the impact of their involvement, and how change occurred within the organisations following their involvement. METHODS: A qualitative approach using focus group discussions was adopted to explore the experiences of two cohorts of participants involved in PPP project teams. Focus groups were held with public advisors (n = 9), interns (n = 9; staff or public who received a funded internship for a PPP project), NHS and Local Authority initiative leads (n = 10), and academic facilitators (n = 14). These were transcribed verbatim and analysed using a thematic approach. RESULTS: Thirty-two public advisors were recruited to support 25 PPP projects across the Collaboration for Leadership in Applied Health Research and CLAHRC North West Coast [NWC] partner organisations. Three inter-related themes were conceptualised: 1)"Where it all started - involving public advisors" identified the varying journeys to recruitment and experiences of becoming a public advisor; 2)"Steps toward active involvement and engagement" related to public advisors becoming core team members; and 3) "Collaborative working to enhance public and patient involvement" relayed how projects identified the benefits of working jointly with the public advisors, particularly for those who had not experienced this style of working before. CONCLUSIONS: The findings indicate that the PPP model is effective for embedding Public and Patient Involvement [PPI] within health services research, and recommends that PPI is integrated at the earliest opportunity within research projects and service evaluations through the use of support-led and facilitative programmes.

The purpose of involving the public and patients in research is to help them have a say in decisions about healthcare and enable patients or other people with relevant experience to contribute to how research is planned, carried out, and shared with a wider audience. The Partner Priority Programme (PPP) was developed by the National Health Service [NHS] and Local Authority partners to share information and experience on evaluating new services being offered to patients that were seeking to reduce health inequalities, improve people's health and wellbeing and reduce emergency hospital admissions. In this paper, we explore an approach we developed for involving public advisors (service users/patients, and caregivers) as equal partners within the evaluation and decision-making processes of health and social care services research. The aim of this study was to identify how public advisors were included, the impact of their involvement, and identify the changes organisations made as a result of public advisor involvement. Most projects had not included public advisors in their teams before and initially did not understand how to involve them. By attending scheduled meetings, they had time to learn how to engage with public advisors (and what methods to use to recruit them to be part of their teams). Participants also learned the benefits of including public advisors within their teams. With the help and support provided as part of the programme, public advisors seemed to grow in confidence and take part in teams as equal partners.

Impact of community-based chronic obstructive pulmonary disease service, a multidisciplinary intervention in an area of high deprivation: a longitudinal matched controlled study.

OBJECTIVE: To examine the effects of a consultant-led, community-based chronic obstructive pulmonary disease (COPD) service, based in a highly deprived area on emergency hospital admissions. DESIGN: A longitudinal matched controlled study using difference-in-differences analysis to compare the change in outcomes in the intervention population to a matched comparison population, 5 years before and after implementation. SETTING: A deprived district in the North West of England between 2005 and 2016. INTERVENTION: A community-based, consultant-led COPD service providing diagnostics, treatment and rehabilitation from 2011 to 2016. MAIN OUTCOME MEASURES: Emergency hospital admissions, length of stay per emergency admission and emergency readmissions for COPD. RESULTS: The intervention was associated with 24 fewer emergency COPD admissions per 100 000 population per year (95% CI -10.6 to 58.8, p=0.17) in the postintervention period, relative to the control group. There were significantly fewer emergency admissions in populations with medium levels of deprivation (64 per 100 000 per year; 95% CI 1.8 to 126.9) and among men (60 per 100 000 per year; 95% CI 12.3 to 107.3). CONCLUSION: We found limited evidence that the service reduced emergency hospital admissions, after an initial decline the effect was not sustained. The service, however, may have been more effective in some subgroups.

Impact of a community-based cardiovascular disease service intervention in a highly deprived area.

OBJECTIVE: To examine the effects on emergency hospital admissions, length of stay and emergency re-admissions of providing a consultant-led, community-based cardiovascular diagnostic, treatment and rehabilitation service, based in a highly deprived area in the North West of England. METHODS: A longitudinal matched controlled study using difference-in-differences analysis compared the change in outcomes in the intervention population, to the change in outcomes in a matched comparison population that had not received the intervention, 5 years before and after implementation. The outcomes were emergency hospitalisations, length of inpatient stay and re-admission rates for cardiovascular disease (CVD). RESULTS: Findings show that the intervention was associated with 66 fewer emergency CVD admissions per 100 000 population per year (95% CI 22.13 to 108.98) in the post-intervention period, relative to the control group. No significant measurable effects on length of stay or emergency re-admission rates were observed. CONCLUSION: This consultant-led, community-based cardiovascular diagnostic, treatment and rehabilitation service was associated with a lower rate of emergency hospital admissions in a highly disadvantaged population. Similar approaches could be an effective component of strategies to reduce unplanned hospital admissions.