Developing Interventions to Address Missingness in Healthcare (original) (raw)

Williamson, Andrea E. ORCID: https://orcid.org/0000-0002-8981-9068, Baruffati, David ORCID: https://orcid.org/0000-0002-5006-792X, Lindsay, Calum ORCID: https://orcid.org/0000-0002-5087-3358, Mackenzie, Mhairi ORCID: https://orcid.org/0000-0003-3402-322X, O'Donnell, Catherine ORCID: https://orcid.org/0000-0002-5368-3779, Wong, Geoff, Simpson, Sharon A. ORCID: https://orcid.org/0000-0002-6219-1768, Ellis, David A. and Major, Michelle(2025) Developing Interventions to Address Missingness in Healthcare. Project Report. University of Glasgow.(doi: 10.36399/gla.pubs.366491).

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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 under-researched. Objectives: Our aim was to develop a theoretically informed understanding of missingness from patient, professional and policy perspectives to co-produce a suite of interventions to test in a future study. Our objectives were to conduct a realist review (work package WP1), realist interviews (WP2) with experts by experience (EBE) and professional key informants (PKI), to produce a missingness programme theory to understand what causes missingness in health care and strategies to address it. Then to convene a Stakeholder Advisory Group (StAG) (WP1 & WP3) to refine this programme theory and devise interventions. Design and Methods, Setting and participants: WP1: our initial candidate programme theory, was refined by one mini-StAG workshop and a realist review focussed on populations of interest and important outcomes, in the health, social care and social policy literature. WP2: realist interviews with 28 EBE and 30 PKI from relevant backgrounds with 3 PKI also being EBE; across Scotland and England. WP3: four workshops with our StAG. We integrated interview results to agree our final missingness programme theory and develop our suite of interventions. Results: The causes of missingness occurred across the patient journey and are driven by complex interactions between patients’ circumstances, the structural drivers of these, and the way services are designed and delivered. Patients may feel the service is not for them – not needed, not able to improve their health, not appropriate, or is unsafe. This is influenced by past experiences of the NHS. Some experience issues physically getting to appointments because of travel costs and difficulties, poor health impeding mobility, and concerns about safety. NHS services have inflexible rules for how they are used, making it hard for patients to arrange the right appointment for them. Patients are subject to competing demands with limited resources, including work, other appointments, caring responsibilities, or urgent and pressing needs or crises caused by precarious circumstances. A lifetime’s worth of experiences of stigma, hostility, trauma, and difficult relationships with care may act as a deterrent against accessing care. There are a set of core principles underpinning the suite of interventions developed. They should be applied judiciously in context, starting with moving away from a simplistic ‘one size fits all’ way of thinking to embedding a missingness lens where professionals understand the drivers of missingness and change their approach. This should be supported by resource to achieve this change. Patients at risk of missingness should be identified. Building and maintaining positive trusting relationships are key and this is embodied in the ‘missingness coordinator’ role who works in all the domains needed to support patients, including paying attention to the systems changes needed. Flexible scheduling is required to meet patients’ needs, and transport and logistics should also be considered. Finally, contact and outreach around appointments according to support needs are required. Limitations: We did not sample across all possible patient characteristics; however, many participants had multiple characteristics, and we judged we had sampled sufficiently to reach theoretical saturation. Conclusions: Missingness in healthcare is caused by a complex interplay of patient and health service factors. This co-produced suite of interventions underpinned by core principles should be used as an overarching framework to address missingness in healthcare. This promises a tangible way to tackle health inequalities in healthcare. Future work: Future work should evaluate the implementation and impacts of this suite of interventions in a range of healthcare settings.

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