Title: Developing interventions to reduce ‘missingness’ in health care
Funder: Chief Scientist Office, Scotland

Abstract: Background We define ‘missingness’ as the repeated tendency not to take up offers of care such that it has a negative impact on the person and their life chances. 'Missingness' disproportionately affects the most marginalised groups in society and is associated with high levels of poor health and premature mortality. This longitudinal view of low engagement in care is an under-researched area both from the lived experience perspective and what can be done to address it. We will draw on the substantive theories of candidacy and structural vulnerability to inform our understanding. Aim To develop a theoretically informed understanding of ‘missingness’ from patient, professional and policy perspectives with the intent of co-producing a complex intervention with multiple components for the health service, to test in a future study. Objectives To conduct a realist review (work package WP1) and realist interviews (WP2) with experts by experience (EPE) and professional key informants (PKI) to produce a 'missingness' programme theory to understand what causes ‘missingness’ in health care and strategies to address it. To convene a Stakeholder Advisory Group (StAG) (WP1 & WP3) to refine this programme theory and devise an intervention programme theory with multiple components to address ‘missingness’ in health care. Methods WP1: using our team's initial candidate programme theory, refined by one mini-StAG workshop, conduct a realist review focussed on populations of interest and important outcomes, in the health, social care and social policy literature to refine our 'missingness' programme theory. This will be visually illustrated. WP2: Realist interviews conducted in person with 30 people with lived experience of 'missingness' and 30 conducted online with key informant professionals from relevant backgrounds; across Scotland and England. Specific attention paid to diversity of involvement and engagement techniques. WP3: Conduct four in person workshops (WS) with our fully convened StAG; 8 experts by experience and 8 professional key informant members using techniques to ensure meaningful, equal and sustained engagement of all. WS1; integrate interview results to agree final 'missingness' programme theory. WS2-4 develop intervention programme theory with components likely to operate at several health care system levels. Timeline for delivery WP1 month 1-15; WP2 month 6-18; WP3; month 13-24. Anticipated Impact and Dissemination In addition to more traditional outputs (4 papers, conference presentations) illustrated visuals of our co-produced 'missingness' programme theory and short videos of the key messages and the intervention will be used to extend the impact and reach of our research across health and social care, policy, the media and third sector including campaign groups. Team members have high profile knowledge exchange and engagement profiles. This research will have an impact on policy and practice at the national disciplinary and delivery level in a range of sectors to some degree and in inclusion health to a high degree. In the first instance a robust focus on the current evidence base; and filing the substantial gap in experts by experience evidence on ‘missingness’, has high value and impact. With future development and evaluation of the intervention this will bring about substantial change for marginalised people in the health and social care system which is likely will bring about positive outcomes for populations.

Lay abstract: Aim To develop a rich understanding of ‘missingness’ in health and social care and identify plausible solutions to address it. Background ‘Missingness’ in care refers to when a person has a pattern of struggling to attend. This may be health care appointments they have arranged or appointments for procedures.This is an important area of study because a recent study of the GP records of more than half a million Scottish people showed that ‘missingness’ is linked to a high risk of having lots of health problems and a much higher risk of dying early. There has been some previous research done in this area but this has tended to look at individual conditions or it has failed to distinguish between people who miss just one appointment and those who miss many. Design and methods We will review the existing literature in health, social care and relevant areas to find out what is already known about what causes ‘missingness’ and how it might be addressed, having first described what the research team thinks are the issues we are trying to solve.The two theoretical perspectives of ‘candidacy’ and ‘structural vulnerability’ are used to guide our thinking. What we produce; called our ''missingness' programme theory' will then have the input of the first members of our Stakeholder Advisory Group (StAG) and people who take part in our research interviews. We will interview 30 people in Scotland and England who have experience themselves of ‘missingness’ and 30 professionals who design and deliver services. They will be invited based on being from groups who are high risk of 'missingness' or who work in a related area. We will ask what they think causes ‘missingness’ and what it means for them and for services. We will also ask what works already, what does not work and what could be done differently, whilst asking too about the various influences of people and society on what could be different. We use ways of sharing information about our review (e.g. by using illustrations), recruiting and gathering information that we know helps increase the likelihood people will take part. Then along with our full StAG, a group of 8 people with experience and 8 people who work with people or design services we will run 4 half day workshops. These will finalise our 'missingness' programme theory and use this understanding to develop solutions to address 'missingness' in health care. We have thought carefully about ensuring safe, meaningful, participation in the workshops. PPI Our team includes a public Co-I who works in a third sector organisation. They have led the way in Scotland in ensuring that people who use services (including those who have found it difficult to do so) are listened to and included in homelessness research and policy. The PPI lead is experienced in working with marginalised people in a range of settings. Careful co-design is integral to the project. Dissemination We will publish four papers about the three main aspects of the study, will employ professionals to produce illustrated visuals and short videos, talk about our work at conferences and publicise it in health and social care, policy and practice. The team are well connected to UK organisations who design, deliver and influence services including the media. This is so ‘missingness’ is taken seriously in the NHS and beyond and efforts made to address it. We will apply for future funding to test out the developed intervention.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE