Measurement of treatment effectiveness, safety, and patient and user outcomes are a core governmental mechanism to manage accountability. If such measurement is to be rigorous, valid and unbiased, it must include the voices of those populations or individuals that are reluctant to take part, hard to include or seldom heard.
For those individuals living with long-term conditions (LTCs), the risk of exclusion is high. The range of associated problems within any condition (e.g. sensory, cognitive, behavioural, communication, psychosocial and emotional effects) can make it more difficult for them to participate in research. The structured format of surveys, for example, can be challenging for people with cognitive or intellectual disabilities. This can lead to exclusion or low levels of engagement in the measurement of the care experience and outcomes. Such exclusion can also be intensified if individuals are part of certain population groups. These include black and minority ethnic (BME) communities, traveller communities, recent and older refugees, those with lower levels of income and education, and those who do not meet the necessary eligibility criteria for the statutory provision of care interventions (i.e. self-funders).
Our work to date has consisted of a review of methodologies for better engagement and analysis of non-response and under-representation in the 2011 Adult Social Care Survey (ASCS). Our principal conclusions were that:
- While systematic data are hard to establish, the group that seem most widely and systematically excluded from the evidence base of health and social care of people with long-term conditions are those with severe cognitive impairments and communication difficulties
- There has been limited progress on developing methods to systematically include these groups in recent years and map across alternative approaches
- More research is needed on a range of other seldom-heard populations: in particular, those who are homeless or from travelling communities, and those from a range of different minority ethnic groups
- The role and attitudes of gatekeepers (e.g. care home managers) has also been identified in the literature as an area for further research in supporting or hindering research participation
- Research on the comparative cost implications and effectiveness of recruitment and data collection methods that promote more inclusive research is needed
- Non-response to the Adult Social Care Survey (ASCS) does not seem to greatly bias outcome indicators used in the Adult Social Care Outcomes Framework (ASCOF). However, limitations on the data available mean our estimates of bias are likely to under-estimate potential bias
- It is important to know more about those who do not respond to surveys and research studies and identify the reasons for their non-engagement, and also why people drop out of research studies
Ongoing work focuses on the first two findings. This priority is motivated by the perceived policy relevance of these issues, and also by the comparative analytical strengths of the Unit.
Developing methods for wider inclusion of people with severe intellectual, communication and cognitive impairments
Testing and validating methods for wider inclusion of people with severe intellectual, communication and cognitive impairments