Title: Policy Research Unit in Quality & Outcomes of Person-Centered Care
Funder: Department of Health (England)

Abstract: Background At the heart of current government policy in health and social care there is a focus on achieving outcomes. The likely success of this outcomes-focused strategy will depend on how well we measure and use outcomes information, and translate the results into policies and practice to improve the experience of people using the health and social care services. Health and social care includes services and support that aims to treat or help individuals in order to improve their quality of life, or to prevent their quality of life getting worse. Our focus is on ‘person-centred care’, of adults and carers of adults who have one or more long-term conditions, that is illnesses or conditions which require treatment, management or support for the rest of their lives. These include a wide variety of conditions such as stroke, diabetes, learning disabilities, and dementia. Many people have more than one long–term condition; our focus is on the person rather than particular illnesses or conditions. Aims Ultimately our overarching aim is to improve the quality of health and social care of people with long-term conditions. We seek to do this through generating high quality evidence about need, quality and outcomes, in a way that helps services and support for people with long term conditions and their carers to improve and become more person-centred. We aim to do this through activities organised under four themes: • Engagement, which is about improving the research evidence available, particularly about groups of people that it is difficult to get good information about: people who are hard to include, seldom heard or reluctant to take part in surveys or research • Measurement, which is about developing good measures, particularly of outcome, or impact of health and social care on people’s quality of life • Application, which is about helping people make the best use of measures of outcomes of health and social care by generating evidence for and guidance to all relevant stakeholders about how they can best use outcomes information in their decisions • Service delivery, which is about discovering the best ways to improve health and social care of people with long term conditions Plan of Investigation Engagement In order to improve the level of inclusion and representativeness of the data available about people with LTCs we will: • Assess the evidence about different methods, mechanisms and processes that have improved inclusion of people with LTCs in surveys and research • Develop these ‘best practice’ techniques to improve the way we include or allow for problems in getting information from hard to reach groups of people in the future Measurement In order to improve outcome measurement and monitoring the quality of services for individuals with LTCs we will • Review evidence and consult with stakeholders to consider the case for, and development of, generic health and social care outcome measures for people with long term conditions and their carers • Develop and support the use of the Adult Social Care Outcome Toolkit (ASCOT), which includes a variety of methods of measuring social care related quality of life Application In order to improve the evidence about the effect and best use of quality and outcome information the work will examine: • Use of outcomes information by commissioners, providers and regulators focusing on how outcomes information can be interpreted and best used to guide choices • Qualitative examination of patients’ and service users’ experiences and views • Examination of data sources and how these can be used and interpreted • Service delivery In order to investigate the degree to which person or patient-centred care is becoming and can become a reality we will initially: • Review existing evidence and identify needs for further research on involving and empowering people with long-term conditions in health and social care • Collate evidence on methods used to enhance involvement and self-management • Assess the likely impact of these on health inequalities • Seek evidence about barriers and facilitators to inform implementation • Identify methods for monitoring performance in patient engagement and self-management and identify gaps in knowledge Potential Impact The work of the unit with its focus on the evidence on outcomes for long term conditions will inform, influence and hopefully have an impact on the work of the target audience of the new health and social care Outcomes Frameworks and the work of agencies such as the NHS Commissioning Board, NICE and SCIE mandated to work with the Framework. This target audience is extensive and inclusive, ranging from chairs of PCTs and NHS Trusts through Medical and Nursing Directors and Directors and managers of Social Services to Allied health professionals, GPs and social care practitioners. Through this we hope to directly affect the lives, experiences and outcomes of people with long-term conditions.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: STROKE;MENTAL HEALTH;NEUROLOGICAL;METABOLIC AND ENDOCRINE