Use of quality information in decision-making about health and social care services--a systematic review.

User choice and personalisation have been at the centre of health and social care policies in many countries. Exercising choice can be especially challenging for people with long-term conditions (LTC) or disabilities. Information about the quality, cost and availability of services is central to user choice. This study used systematic review methods to synthesise evidence in three main areas: (i) how people with LTC or disabilities and their family carers find and access information about the quality of services; (ii) how quality information is used in decision-making; and (iii) what type of quality information is most useful. Quality information was defined broadly and could include formal quality reports (e.g. inspection reports, report cards, etc.), information about the characteristics of a service or provider (e.g. number and qualifications of staff, facilities, etc.) and informal reports about quality (e.g. personal experience, etc.). Literature searches were carried out using electronic databases in January 2012. Thirteen papers reporting findings from empirical studies published between 2001 and 2012 were included in the review. The majority of papers (n = 9) had a qualitative design. The analysis highlighted the use of multiple sources of information in decision-making about services and in particular the importance of informal sources and extended social networks in accessing information. There is limited awareness and use of 'official' and online information sources. Service users or family carers place greater emphasis on general information and structural indicators. Clinical or quality-of-life outcomes are often difficult to interpret and apply. Trust emerged a key issue in relation to quality information. Experiential and subjective information is highly valued and trusted. Various barriers to the effective use of quality information in making choices about services are identified. Implications for policy and future research are discussed.