Award Title: The Missing Billion: Using participatory approaches to improve access to healthcare for disabled people in Uganda
Funder: Department of Health and Social Care

Abstract: BackgroundParticipatory Learning and Action (PLA) is a community-led participatory strategy to improve healthcare access. Community groups are established. They meet regularly to identify issues, develop and implement solutions, and evaluate results. PLA for women significantly reduces maternal and neonatal mortality, but its impact in other areas is not clear. The study aims to assess whether the PLA for Disability (PLA-D) can reduce mortality and improve health and healthcare access of disabled people in Uganda. Objectives:	To use an evidenced-based approach to co-create PLA-D. 	To assess the feasibility of PLA-D implementation. 	To undertake a cluster-based Randomised Controlled Trial (RCT) to assess the effectiveness/cost-effectiveness of PLA-D in reducing mortality. 	To undertake a process evaluation of PLA-D to understand mechanisms for impact and scale-up. 	To strengthen capacity for informing disability policy and practice through the conduct of high-quality research.MethodPLA adaptation (months 0-24): We will undertake in-depth interviews and analyse existing quantitative data to describe healthcare access and barriers experienced by disabled people in Uganda. We will update relevant systematic reviews and review the PLA literature. A consortium (researchers, implementers, disabled people) will co-create the PLA-D using the formative research. Feasibility of PLA-D will be assessed with 5 groups in Uganda.A two-arm cluster RCT will assess the effectiveness and cost-effectiveness of PLA-D in Luuka district, Uganda (months 24-48). The control arm will receive health system strengthening support (accessibility audit of healthcare facilities; healthcare worker disability training). The intervention arm will additionally receive the PLA-D intervention, with one group established per cluster (village or city block). Groups will target disabled people, but will be open to their family/community members. We will include 64 clusters per arm with approximately 50 disabled people per cluster (Total: 3200 disabled participants per arm). Data collection will occur: 1) pre-randomisation (baseline), 2) after intervention completion (12 months) and 3) endline (24 months post-baseline). Disabled participants will complete a structured questionnaire with a trained researcher covering: healthcare quality and access, morbidity, quality of life, and contextual characteristics (e.g. poverty). Vital status will be recorded at follow-ups and verbal autopsy undertaken for reported deaths. Direct and indirect intervention costs will be collected. A process evaluation will be undertaken to examine the intervention implementation, potential mechanism for action, and consider strategies for scale-up. Ethical procedures will be adhered to throughout. Analysis/dissemination (months 49-60). Intention-to-treat analyses will compare outcomes between control and intervention arms. Incremental cost-effectiveness ratio will be calculated for outcomes. We will disseminate findings to key audiences (communities, disabled people, Ugandan and international policy/programme implementers, academics) through tailored approaches (e.g. policy/evidence briefs, community meetings, individual meetings, journal articles, academic presentations).Anticipated impact PLA-D is anticipated to improve healthcare access and quality for disabled people in the intervention clusters, and thereby reduce morbidity and mortality. Better health will support participation (e.g. education, employment), and so improve quality of life and reduce poverty. If successful, this programme can be scaled in Uganda and other LMICs, extending this impact. Translational research capacity will be strengthened for Professor Kuper and Ugandan partners.

Lay Abstract: BackgroundThere are one billion disabled people globally. Disabled people, on average, have higher healthcare needs than others. Yet they face barriers in accessing healthcare. As a result, they have worse health outcomes, including 2-3 times higher mortality rates across all ages. Policies and laws supporting the right to healthcare for disabled people are often not put into practice. Evidence is growing that interventions to improve healthcare led by communities are particularly effective. They are low-cost, scalable and address locally relevant concerns. One example is the Participatory Learning and Action (PLA) approach developed to prevent maternal and newborn deaths. In PLA, women's community groups are established and meet monthly to: 1) identify problems, 2) identify solutions, 3) plan and implement solutions, and 4) evaluate their efforts. PLA significantly reduces maternal and newborn deaths, usually by at least 20%, and is endorsed by WHO. The aim of this study is to assess whether the Participatory Learning and Action for Disability (PLA-D) approach can reduce mortality and improve health of disabled people in Uganda. Uganda is the research setting, given my strong networks and partners and the legal commitments on healthcare provision for disabled people.Design and methodResearch will be undertaken by a consortium of UK and Uganda based partners. We will identify the problems facing disabled people in accessing healthcare in Uganda, through: 1) In-depth interviews with key informants (e.g. disabled people, health workers), 2) Analysis of existing numerical data, 3) Updating reviews on access to healthcare for disabled people. We will then collaborate with disabled people and health professionals to use this information to adapt the PLA approach for disabled people. We will decide who should facilitate the groups, where they should meet, and how the PLA delivery and materials need to be adapted. Five PLA-D groups will be established, each including about 20 disabled people, and we will assess whether they are feasible to run and if further adaptations are needed. We will then undertake a trial to assess whether PLA-D is effective. We will identify 128 clusters (villages or city blocks) in Luuka district, and randomly assign them to be in the intervention or control group. In the control group, we will help to strengthen the health system, by undertaking an accessibility audit of health facilities and providing training on disability to healthcare workers. In the intervention group we will establish one PLA-D group per cluster, as well as the health system strengthening activities. We will interview all disabled people in the study about health and healthcare access at baseline and follow-up (1 year and 2 years), and record if any participants had died. The intervention and control groups will be compared to assess whether mortality rates were lower and health/healthcare access better in the intervention groups than among controls, and what the cost was for the outcomes achieved.Community engagement and involvementCommunity engagement is at the heart of PLA as well as the Disability Movement with its ethos 'Nothing about us, without us'. Identification of problems and implementation of solutions is led by disabled people themselves. We will include disabled people as advisors at every stage, and as researchers wherever possible.DisseminationResearch is most worthwhile if it can be used to improve policy and practice. We will develop tailored strategies to reach our key audiences. We will hold community meetings and with disabled people's organisation. We will engage with policy and programme implementers, both in Uganda and internationally, by producing short documents of key findings and holding meetings. We will reach academics through publishing articles in journals and presenting at key meetings and conferences.

Research Activity Codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health Categories: GENERIC HEALTH RELEVANCE