Dataset Health Committees and disability

<br> <strong>Community participation and the right to health for people with disability: Health Committees’ understanding of and role in ensuring health care for persons with disability.</strong> <strong>ABSTRACT</strong> <strong>INTRODUCTION</strong>: People with disabilities encounter major barriers that prevent them from realising their right to health in South Africa. Health committees are legislated structures for community participation in health at a local level. This study investigated how health committee members understand and practise their role in community participation and how this advances the right to health for persons with disability. <strong>METHODS</strong>: A qualitative study was conducted with three health committees in the Cape Town Metropole in the Western Cape province of South Africa purposively selected for the study. Three facility managers and eight health committee members took part in focus group discussions and semi-structured interviews, supplemented by participant observations of committee meetings. Additionally, semi-structured interviews were conducted with two disability activists. These methods were used to gain a rich understanding of health committees’ roles and practise in relation to persons with disability. Thematic content analysis was used to analyse the data. <strong>RESULTS</strong>: The main research findings were: (i) health committees did not prioritise disability on their respective agendas; (ii) persons with disability were not adequately represented on health committees; (iii) health committees exhibited poor understanding of disability barriers relating to health; (iv) lack of egalitarian values led to persons with disability not trusting the health committee, and distrust amongst health committee members; lastly (v) health committees augment health facility operations instead of fulfilling their governance and oversight function. These factors may have contributed to health committees not helping to advance the right to health for persons with disability. <strong>CONCLUSION</strong>: Health committees should include mandated representation of persons with disability, whilst addressing marginalisation directed toward them persons with disability on committees. Training of health committees, as well as networking with organisations of persons with disability, could help improve their limited understanding of disability. Health committees should consider addressing disability as a human rights issue, which critically involves community mobilisation, raising awareness around issues of disability and promoting agency amongst persons with disability to claim their rights. The dataset consists of focus groups, interviews and observations with three health committees as well as a document review. The data focus on understanding how health committees represent disability issues in health services. The dataset is available on reasonable request.