TY - JOUR T1 - Giving patients a voice: implementing patient and public involvement to strengthen research in sub-Saharan Africa JF - Journal of Epidemiology and Community Health JO - J Epidemiol Community Health SP - 307 LP - 310 DO - 10.1136/jech-2019-212525 VL - 74 IS - 4 AU - Carol Bedwell AU - Tina Lavender Y1 - 2020/04/01 UR - http://jech.bmj.com/content/74/4/307.abstract N2 - Patient and public involvement (PPI) is recognised as a valuable tool in improving the quality and relevance of research.1 2 Defined as ‘research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them’,2 PPI is a method of involving patients and the public in the design, conduct and dissemination of research and services that affect them, providing for a more democratic approach and patient empowerment.1 3 Active involvement in research and healthcare is very much expected and is well established within many high-income settings. However, in low-income settings, PPI is in its infancy, with few researchers understanding the concept.4 This may lead to a failure to match health need with appropriate research,5 particularly when the research agenda is set by others, leading to acknowledged power imbalances.6 In such settings, empowerment of individuals is low and patients are not included in research design or conduct. In sub-Saharan Africa, gender inequalities mean that women have limited input into both healthcare-related decisions and research.7 Experience of working in these settings highlighted that this is the case even in research which is women-centred, such as maternity care.In embarking on an National Institute for Health Research-funded programme of work related to prevention and management of stillbirth in sub-Saharan Africa, our research group recognised it was essential that women informed all stages of the research process. Stillbirth is stigmatised and seldom discussed in African culture, with women often blamed for the death of the baby, and is, therefore, considered a sensitive subject,8 which is challenging to research. In order for the research to meet its potential and to provide meaningful results, it was vital to gain women’s views to determine how such research could be best conducted. Thus, we introduced … ER -