{"id":1871,"date":"2019-08-21T11:07:11","date_gmt":"2019-08-21T10:07:11","guid":{"rendered":"http:\/\/blogs.lshtm.ac.uk\/hppdebated\/?p=1871"},"modified":"2019-08-21T11:07:11","modified_gmt":"2019-08-21T10:07:11","slug":"how-can-we-do-a-better-job-of-setting-research-agendas-with-communities","status":"publish","type":"post","link":"https:\/\/blogs.lshtm.ac.uk\/hppdebated\/2019\/08\/21\/how-can-we-do-a-better-job-of-setting-research-agendas-with-communities\/","title":{"rendered":"How can we do a better job of setting research agendas with communities?"},"content":{"rendered":"<p><strong>By Bridget Pratt (University of Melbourne)<\/strong><\/p>\n<p><strong>The status quo: Communities lack a say<\/strong><\/p>\n<p>Community engagement is gaining prominence in global health research. Growing consensus about the importance of community representation and participation for ethical research means research institutions and funding bodies now promote, or even mandate, community engagement as an important component of \u201ctraditional\u201d non-participatory health research projects. They increasingly expect global health researchers to engage with communities <em>throughout <\/em>the research process.<\/p>\n<p>In practice, however, global health research priority-setting is dominated by funders and researchers, often from high-income countries. Communities, particularly those considered disadvantaged and marginalised, rarely have a say in setting the research topics and questions of global health research projects.<\/p>\n<p><strong>What\u2019s needed to ensure meaningful engagement?<\/strong><\/p>\n<p>So how can global health research put its money where its mouth is (so to speak)? And ensure that mandates and calls for engagement throughout research projects, which includes during agenda-setting, happens in a meaningful way rather than tokenistically?<\/p>\n<p>I\u2019ve been exploring that question through my research for the past few years. As part of this work, I\u2019ve been speaking to researchers, ethicists, community engagement practitioners, community organisation staff, community researchers, community leaders, and others in the community about what\u2019s necessary to share power in global health research priority-setting. And while I don\u2019t have all the answers, <a href=\"https:\/\/academic.oup.com\/heapol\/advance-article\/doi\/10.1093\/heapol\/czz041\/5511582?searchresult=1\">my work<\/a> can offer some initial recommendations for what researchers and their community partners can do before, during and after agenda-setting for their research projects.<\/p>\n<p>For global health research projects\u2019 topics and questions should reflect the voices and needs of marginalized communities, their engagement in priority-setting must be carried out in a particular way.<\/p>\n<p><span style=\"text-decoration: underline\"><em>Before priority-setting<\/em><\/span><\/p>\n<p>Before priority-setting, it is important to ensure that the research team includes partners from community organisations, ideally from those that genuinely represent or have solid relationships with marginalized communities. It is also important to assess for whether the <a href=\"https:\/\/academic.oup.com\/heapol\/advance-article-abstract\/doi\/10.1093\/heapol\/czz041\/5511582\">contextual factors<\/a> necessary for meaningful engagement are present or can be built with the community of focus. For example, building trust is essential in settings where there is a prior history of exploitation by researchers:<\/p>\n<p><em>You won\u2019t get marginalised groups unless you actively go out there and spend quite a lot of time overcoming those barriers which are that you are a researcher and we\u2019ve had researchers come through here before and they use us and spit us out<\/em>. (Global health researcher, Australia)<\/p>\n<p>It\u2019s also essential that researchers be open-minded and not buy into hierarchies of knowledge. Researchers should be:<\/p>\n<p><em>Open to the idea that communities know their needs much more than we can ever know<\/em>. (Ethics researcher, Kenya)<\/p>\n<p><span style=\"text-decoration: underline\"><em>During priority-setting <\/em><\/span><\/p>\n<p>During priority-setting, it is vital to implement strategies for sharing power between researchers and communities across <a href=\"https:\/\/academic.oup.com\/heapol\/advance-article-abstract\/doi\/10.1093\/heapol\/czz041\/5511582\">12 features of the priority-setting process<\/a>. For example, in areas like framing and stage of participation. Sharing power means having an \u2018open\u2019 scope during priority-setting: no or very few research topics related to health are off the table. This gives the opportunity to be much more responsive to what the community sees as a priority. Where structural factors prevent having a completely open scope for what research topics can be set for a global health research project, sharing power means being clear and honest about these constraints before starting priority-setting.<\/p>\n<p>Involving community members and community organisation partners from the very beginning of the priority-setting process is another key way of sharing power. This means engagement starts when developing funding applications and identifying possible research topics, rather than waiting until intervention design:<\/p>\n<p><em>[T]he ideal thing would be for the topics to be defined by the community itself, so what are their issues, you know what is pressing at the moment. . . so talk to the community before the topic\u2019s defined and then you know make sure that that\u2019s represented in the topic.<\/em> (Community Organisation staff member, Australia).<\/p>\n<p><span style=\"text-decoration: underline\"><em>After priority-setting<\/em><\/span><\/p>\n<p>After priority-setting, it is essential to demonstrate <a href=\"https:\/\/academic.oup.com\/heapol\/advance-article-abstract\/doi\/10.1093\/heapol\/czz041\/5511582\">respect and accountability<\/a> to such communities.<\/p>\n<p><span style=\"text-decoration: underline\"><em>Role of funders and universities<\/em><\/span><\/p>\n<p>In addition to these recommendations for researchers\u2019 practice, it\u2019s imperative that funders and universities come to the table. We need funding models that support relationship-building and community engagement in agenda-setting for global health research projects. Changes to how researchers are trained are needed as well. Which could mean ensuring that <a href=\"https:\/\/dspace.library.uvic.ca\/handle\/1828\/7989\">higher degree research programs at universities<\/a> cover engagement skills and participatory methods.<\/p>\n<p><strong>Where to from here?<\/strong><\/p>\n<p>So ultimately there\u2019s a lot that researchers, their partners, funders and universities can do to change the status quo and help ensure that communities have a say and are heard when setting global health research agendas. To assist researchers and their partners, I\u2019ve been developing an \u201cethical toolkit\u201d to help them design priority-setting processes that meaningfully include the communities impacted by their projects. The toolkit comprises a reflective project planning aid for use <em>before<\/em> priority-setting is undertaken for global health research projects. Its use will promote power-sharing in priority-setting and help deliver projects with research topics and questions that more accurately reflect communities\u2019 health care and system needs. (The toolkit is available upon request at <a href=\"mailto:bridget.pratt@unimelb.edu.au\">bridget.pratt@unimelb.edu.au<\/a>).<\/p>\n<hr \/>\n<p><strong><u>Related link<\/u><\/strong><\/p>\n<p>\u00b7\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <a href=\"https:\/\/academic.oup.com\/heapol\/advance-article\/doi\/10.1093\/heapol\/czz041\/5511582?searchresult=1\">Towards inclusive priority-setting for global health research projects: recommendations for sharing power with communities<\/a><br \/>\n<a href=\"https:\/\/academic.oup.com\/heapol\/search-results?f_Authors=Bridget+Pratt\">Bridget Pratt\u00a0<\/a><br \/>\n<em>Health Policy and Planning<\/em>, <a href=\"https:\/\/doi.org\/10.1093\/heapol\/czz041\">https:\/\/doi.org\/10.1093\/heapol\/czz041<\/a><\/p>\n<p><strong><span style=\"text-decoration: underline\">Image<\/span><\/strong><\/p>\n<p><em>All\u00a0photographs are original contributions by Bhargav Shandilya and are licensed\u00a0under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0<br \/>\nThis\u00a0photograph series was developed for a research project titled \u201cParticipation\u00a0for local action: improving access to\u00a0maternal health services for indigenous\u00a0communities in south India\u201d (2014-16). This project is implemented by\u00a0Vivekananda\u00a0Girijana Kalyana Kendra in partnership with the local indigenous\u00a0community, and Chamarajanagar district health team, under\u00a0the guidance of a\u00a0team of public health researchers in Karnataka. This research is supported by\u00a0the WHO Alliance of Health\u00a0Policy and Systems Research under its decision\u00a0maker-led implementation research platform.<\/em><\/p>\n<p><em>Link to\u00a0the project webpage\u00a0<\/em><a href=\"https:\/\/iphindia.org\/project\/implementation-research-project\/\">https:\/\/iphindia.org\/project\/implementation-research-project\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>By Bridget Pratt (University of Melbourne) The status quo: Communities lack a say Community engagement&#8230;<\/p>\n","protected":false},"author":576,"featured_media":1872,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[29,16247,24205,24213],"tags":[49986,16246],"class_list":["post-1871","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-funding","category-health-policy","category-health-systems","category-low-income-countries","tag-communities","tag-global-health","odd"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>How can we do a better job of setting research agendas with communities? 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