Achieving inclusive research priority-setting: what do people with lived experience and the public think is essential?

Background Engagement of people with lived experience and members of the public is an ethically and scientifically essential component of health research. Authentic engagement means they are involved as full partners in research projects. Yet engagement as partnership is uncommon in practice, especially during priority-setting for research projects. What is needed for agenda-setting to be shared by researchers and people with lived experience and/or members of the public (or organisations representing them)? At present, little ethical guidance exists on this matter, particularly that which has been informed by the perspectives of people with lived experience and members of the public. This article provides initial evidence about what they think are essential foundations and barriers to shared decision-making in health research priority-setting and health research more broadly. Methods An exploratory, qualitative study was conducted in 2019. 22 semi-structured interviews were performed with key informants from the UK and Australia. Results Three main types of foundations were thought to be essential to have in place before shared decision-making can occur in health research priority-setting: relational, environmental, and personal. Collectively, the three types of foundations addressed many (but not all) of the barriers to power sharing identified by interviewees. Conclusions Based on study findings, suggestions are made for what researchers, engagement practitioners, research institutions, and funders should do in their policy and practice to support meaningful engagement. Finally, key international research ethics guidelines on community engagement are considered in light of study findings.

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

To promote social justice and equity, global health research should meaningfully engage communities throughout projects: from setting agendas onwards. But communities, especially those that are considered disadvantaged or marginalised, rarely have a say in the priorities of the research projects that aim to help them. So far, there remains limited ethical guidance and resources on how to share power with communities in health research priority-setting. This paper presents an “ethical toolkit” for academic researchers and their community partners to use to design priority-setting processes that meaningfully include the communities impacted by their projects. An empirical reflective equilibrium approach was employed to develop the toolkit. Conceptual work articulated ethical considerations related to sharing power in g0l0o0bal health research priority-setting, developed guidance on how to address them, and created an initial version of the toolkit. Empirical work (51 in-depth interviews, 1 focus group, 2 case studies in India and the Philippines) conducted in 2018 and 2019 then tested those findings against information from global health research practice. The final ethical toolkit is a reflective project planning aid. It consists of 4 worksheets (Worksheet 1- Selecting Partners; Worksheet 2- Deciding to Partner; Worksheet 3- Deciding to Engage with the Wider Community; Worksheet 4- Designing Priority-setting) and a Companion Document detailing how to use them. Reflecting on and discussing the questions in Worksheets 1 to 4 before priority-setting will help deliver priority-setting processes that share power with communities and projects with research topics and questions that more accurately reflect their healthcare and system needs.

Using social media to engage knowledge users in health research priority-setting: a scoping review (Preprint)

BACKGROUND The importance of including knowledge users (patients, family caregivers, clinicians, other advocates) in health research priority-setting is becoming increasingly recognized. Social media-based methods represent one means to elicit and prioritize the research interests of knowledge users, but there remains sparse methodological guidance on how best to conduct social media efforts and assess their effectiveness. OBJECTIVE This scoping review aimed to identify studies that used social media methods to engage knowledge users in research priority-setting. We synthesized associated data to understand how the methods are being used, how method effectiveness is directly and indirectly measured, and benefits, limitations, and recommendations. METHODS We searched PubMed, EMBASE, Cochrane Library, Scopus, and Web of Science from database inception until June 2020. Two reviewers screened all titles and abstracts, as well as full-texts. We included all peer-reviewed studies that implemented and evaluated social media strategies aimed at engaging knowledge users in research priority-setting. We conducted a subsequent thematic analysis using NVivo 12 to aggregate study data into related codes and themes. RESULTS A total of 18 papers reporting on 17 unique studies were included. These studies utilized Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and online forums to engage with knowledge users. Priority-setting engagement strategies included paid platform-based advertisements, email-embedded survey links, and question-and-answer forums. Dissemination techniques for priority-setting surveys included snowball sampling, and the circulation of participation opportunities via internal members’ and external organizations’ social media platforms. Social media campaign effectiveness was directly assessed as number of clicks and impressions on posts, frequency of viewed posts, volume of comments and replies, number of times individuals searched for a campaign page, and number of times a hashtag was used; and indirectly assessed as the total number of survey responses and the number of visits to external survey administration sites. Included studies recommended the use of social media group moderators, opportunities for peer-to-peer interaction, and the establishment of a consistent tone and brand. CONCLUSIONS Social media may increase the speed and reach of knowledge user priority-setting participation opportunities leading to the development of research agendas informed by patient, family caregivers, clinicians, and other advocates. Perceived limitations of the approach include underrepresentation of certain groups and addressing these limitations will ensure the inclusion of research priority opinions of a broad knowledge user group.

What are Important Ways of Sharing Power in Health Research Priority Setting? Perspectives From People With Lived Experience and Members of the Public

Community engagement (patient and public involvement) is gaining prominence in health research worldwide. But there remains limited ethical guidance on how to share power with communities in health research priority setting, particularly that which has been informed by the perspectives of those being engaged. This article provides initial evidence about what they think are important ways to share power when setting health research projects’ topics and questions. Twenty-two people with lived experience, engagement practitioners, and members of the public who have been engaged in health research in the United Kingdom and Australia were interviewed. Thematic analysis identified 15 key ways to share power, many of which are relational. This study further demonstrates that tensions exist between certain ways of sharing power in health research priority setting. More research is needed to determine how to navigate those tensions.

The Social Value of Research and Health Research Priority-Setting

This chapter discusses the social value requirement in clinical research and its intersection with health research priority-setting. The social value requirement states that clinical research involving human subjects is only ethical if it has the potential to produce socially valuable knowledge. The chapter discusses various ways to specify both the justification for and the content of the social value requirement. It goes on to consider the implications of various accounts of the content and justification for the requirement for the ethics of health research priority-setting, showing that while some accounts of the requirement are largely silent with respect to how research questions should be prioritized, others entail robust obligations to prioritize research that might benefit particular groups. The chapter also briefly examines potential arguments for something like a social value requirement in other kinds of research, specifically social scientific research.

Health Research Priority Setting in Uganda: A Qualitative Study Describing and Evaluating the Processes

Background: Over the years, several approaches to health research priority setting (HRPS) have been devised and applied in low-incomes countries for national level research prioritization. However, there is often a disconnect between the evidence that health policymakers require for decision-making and the research that receives funding. There is a need for countries to evaluate their prioritization processes to support strategies to translate priority setting into policy practice. While health research priority setting is continuously carried out in Uganda, these processes are rarely reported on the scholarly literature and have not been evaluated. This study aimed to describe and evaluate HRPS in Uganda. Methods: This was a qualitative case study consisting of document review and key informant interviews with stakeholders who had either directly participated in or had specialized knowledge of HRPS in Uganda.Results: While Uganda has established and legitimized a National health research organization to set health research priorities, coordinate and provide oversight for health research in the country, several institutions independently conduct their own health research priority setting. The evaluation revealed that while the priority setting processes are often based on systematic approaches and tools and tended to be evidence based, most of the prioritization processes lacked stakeholder involvement and implementation. Moreover, the priorities were not publicized and none had mechanisms for appeals or revisions. In only one case were the priorities implemented.Conclusions: The availability of strong political commitment and a national priority setting institution is an opportunity for strengthening health research priority setting. There should be increased support for the institution to enable it to carry out its duties. The institution should not only invest in participatory, systematic health research priority setting and implementation but evaluation as well in order for them to identify areas for improvement.

Health Research Priority Setting in Oman: Towards better utilization of the available resources

Objective: This concept paper aims to portray the steps and strategies followed in setting the health research priorities in Sultanate of Oman. Methods: This exercise was developed based on COHRED management process to priority setting for planning a high-quality health research priority setting exercise at national and sub national levels. Ranking for the diseases and risk factors in Oman was based on the estimates obtained from the Global Burden of Disease (GBD) 2016 study by the Institute for Health Metrics and Evaluation (IHME). The most important topics were generated from a panel of experts to tackle the above ranked problems, which was supported with a feasibility score to plan for conducting research. Results: A list of top 30 diseases and 10 risk factors based on DALYs estimates was ranked and listed. Sub-research topics were listed under each category. Feasibility scores were obtained from all the sub-national levels based on available human resources, infrastructure, financing, technology, legality, and ethical consideration. A plan for the next 15 years was developed for each sub national level based on the feasibility score. Conclusion: Prioritisation mechanisms are necessary to facilitate the current demand for increased harmonisation of health research to meet health services needs particularly in combination with translating the results into actions that improve overall population health. Due to the immense importance of health research in improving the health system and health services, the decision to prioritise health research was the first step in the direction to enhance health research and thereby enhance health service in Oman by the Centre of Studies & Research. This intervention will lead the health system to achieve better planning for effective utilization of available resources.

Reporting guideline for priority setting of health research (REPRISE)

Background Research priority setting with stakeholders can help direct the limited resources for health research toward priority areas of need. Ensuring transparency of the priority setting process can strengthen legitimacy and credibility for influencing the research agenda. This study aims to develop a reporting guideline for priority setting of health research. Methods We searched electronic databases and relevant websites for sources (frameworks, guidelines, or models for conducting, appraising, reporting or evaluating health research priority setting, and reviews (including systematic reviews)), and primary studies of research priority setting to July 2019. We inductively developed a list of reporting items and piloted the preliminary guideline with a diverse range of 30 priority setting studies from the records retrieved. Results From 21556 records, we included 26 sources for the candidate REPRISE framework and 455 primary research studies. The REporting guideline for PRIority SEtting of health research(REPRISE) has 31 reporting items that cover 10 domains: context and scope, governance and team, framework for priority setting, stakeholders/participants, identification and collection of priorities, prioritization of research topics, output, evaluation and feedback, translation and implementation, and funding and conflict of interest. Each reporting item includes a descriptor and examples. Conclusions The REPRISE guideline can facilitate comprehensive reporting of studies of research priority setting. Improved transparency in research priority setting may strengthen the acceptability and implementation of the research priorities identified, so that efforts and funding are invested in generating evidence that is of importance to all stakeholders.