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Table 1 Case studies

From: Sharing power in global health research: an ethical toolkit for designing priority-setting processes that meaningfully include communities

Participation for Local Action project (India)

The Participation for Local Action (PLA) project ran from January 2015 to September 2016. Its research team consisted of seven members: a principal investigator from a local NGO, one co-investigator from the Institute of Public Health in Bangalore, one co-investigator from the Zilla Budakattu Girijana Abhivrudhhi Sangha [district Sangha], two co-investigators from other Indian research institutions, one co-investigator from a Belgian university, and two co-investigators from the Government of Karnataka. The PLA project was undertaken in partnership with the district Sangha, an Indigenous community development organisation. The district Sangha is comprised of 21 members [district Sangha leaders] and represents all Soliga living in Chamarajanagar district. The Soliga are an Indigenous population who have lived in the BR Hills region of Southern Karnataka for centuries. The district is divided into four sub-districts: Chamarajanagar, Gundlupet, Kollegal and Yelandur. Sangha organisations also exist at sub-district and village levels.

The PLA project was a participatory action research project that aimed to improve maternal and child health in the Soliga community. The project essentially comprised a priority-setting process. Introductory meetings were first conducted in 2015 between the researchers and district Sangha leaders. Once the district Sangha decided to participate, it recruited ten field investigators (five men and five women from the Soliga community) and a field supervisor to visit the district’s 148 Soliga villages and collect data about the problems that households faced in accessing maternal and child health services. Data were jointly analysed by three district Sangha leaders and one of the researchers, and six core themes were identified. In June 2016, a deliberative workshop was held and attended by 60 Sangha leaders (from district, sub-district, and village levels) to reflect on the six themes, to prioritise amongst them, and to develop community-led solutions to address them. A health navigator intervention (a mobile helpline for health queries) was selected for implementation.

Women with Disabilities taking Action on REproductive and sexual health project (Philippines)

The Women with Disabilities taking Action on REproductive and sexual health (W-DARE) project ran from 2013 to 2015. It comprised an interdisciplinary partnership between researchers, health service providers, and disabled persons organisations that steered the engagement of women living with disability in Quezon City and Ligao City in the Philippines. It was conducted in partnership by the University of Melbourne (Australia); De La Salle University (Philippines); community partners WOWLEAP, PARE, and Likhaan Center for Women’s Health; and the Center for Women’s Studies at the University of the Philippines. The W-DARE project was a participatory action research project that aimed to improve the sexual and reproductive health of women with disability in the Philippines. The project supported disabled persons organisations and women living with disability to identify and prioritise issues related to accessing reproductive and sexual health services and to develop solutions/interventions to address them.

The W-DARE project essentially comprised a five-stage priority-setting process:

1. Conceptualising- Setting aims and methods to generate priorities

2. Planning- Designing data collection tools and determining how to implement them

3. Data collection and analysis- Identifying main health problems through in-depth interviews and focus groups with women living with disability, their families, and service providers

4. Deciding which problem(s) to prioritise

5. Identifying interventions and prioritising which to take forward

Women living with disability participated in stages two through five as part of the research team. Women living with disability from Quezon City and Ligao City also participated in stage 3 as study participants. Through this process, a set of interventions was selected that included demand-side interventions, supply-side interventions, interventions to develop an enabling local environment, and enabling society interventions that were then tested.