Participatory methods for research prioritization in primary care: an analysis of the World Café approach in Ireland and the USA

Abstract

Background.There are increasing imperatives for patients and members of the public to engage as partners in identifying health research priorities. The use of participatory methods to engage stakeholders in health care in research prioritization is not commonly reported.Objective.This article analyses the use of World Cafés as a participatory method for research prioritization with marginalized communities in Ireland and the USA.Methods.The principles of purposeful and snowball sampling were followed in both settings and a diverse range of community and health care stakeholders participated (n = 63 Ireland and n = 55 USA). The principles for a classic World Café were employed but there were novel features in each setting as well. Stewart et al.’s (Patients’ and clinicians’ research priorities. Health Expect 2011; 14: 439–48, conceptual framework for patient engagement was adapted and used to comparatively analyse the strengths and weaknesses of the World Cafés, focusing on agenda setting, engagement with research processes, interactional features and outputs.Results.Design principles for World Cafés were found to align with high-quality patient engagement for research prioritization in both settings. They served to facilitate meaningful collaboration among stakeholder groups in research prioritization (research agenda setting) and explored research priorities (engagement with research). The café ambience, emphasis on hospitality and self-facilitation created an environment for dialogues within and across participating groups (interactional features). There was a commitment to follow-up actions with reference to possible subsequent research (outputs).Conclusions.The World Café is a valuable, participatory, flexible method that can be used with community and health care stakeholders for research prioritization with marginalized communities.

Preparing for inclusive consultation, research and policy development: insights from the field of Deafblindness

“…Moreover, a specialised research tool kit and research guidelines designed by Deafblind people are needed to ensure good practice approaches to research and consultation activities with Deafblind people. Finally, qualitative methodologies such as World Café may be effective in providing a safe environment for people with diverse cultures, identities and abilities to share their experience and co-produce the theoretical, technical, and practical components needed for inclusive research and policy development processes (MacFarlane et al, 2017;Merier & Geldenhuys, 2017;Selepak, 2008).…”

“…WC can be utilised as a "powerful social technology for engaging people in conversations that matter offering an effective antidote to the fast-paced fragmentation and lack of connection in today's world" (Brown, 2018). People from a range of CALD groups and people with disabilities have been successfully engaged in community conversations, including in WCs, across complex and multifaceted issues (MacFarlane et al, 2017;Schieffer, Issacs & Gyllenpalm, 2004). WCs have been utilised to share collective intelligence and generate solutions across a range of issues in direct practice, policy, organizations context and social inclusion (Brown, Isaacs & Tan, 2008;Burke & Sheldon, 2010;Fallon & Bean, 2014;Horvath, 2005).…”

Research priorities of women at risk for preterm birth: findings and a call to action

“…• Stress and the Benefits of Social Support [2] • Education and Empowerment of Birthing Women [7] • Support for Fathers During and After Pregnancy [16] • The Impact of Men on Pregnancy Outcomes [17] • Role of Family and Friends in Caring for Families [19] Why aren't there more widely available education materials or videos, etc. to help women recognize their own stress?…”

“…Methods for PPI in research priority setting are relatively nascent. Typical methods of research funders to engage PPI in research strategy include gathering input from representatives from patient advocacy organizations, or inviting patients or patient representatives to stakeholder consultation meetings, sometimes together with professional and industry stakeholders, or conducting surveys [16][17][18][19][20]. One of the most welldeveloped and widely used methods for PPI in research is the James Lind Alliance (JLA) Priority Setting Partnerships [6] that brings together patients, their caregivers and clinician groups to identify treatment uncertainties (i.e., questions about treatments which cannot be answered by existing research).…”

Development of National Newborn Screening Quality Indicators in the United States

“…The final QIs-incorporate measurements from the full spectrum of the newborn screening system, from dried blood spot collection and specimen delivery to the laboratory, to point of care screening, diagnosis, and tracking missed (false negative) cases. Structured group communication methodologies, including the Delphi process, public comment, and World Café, were employed by NewSTEPs [6,7]. This step-wise and iterative community engagement process is outlined chronologically in Table 1.…”