Wiehe Sarah E, Nelson Tammie L, Hawryluk Bridget, Andres Unai Miguel, Aalsma Matthew C, Rosenman Marc B, Butler Michael S, Harris Michelle, Moore Kem, Scott C Dana, Gharbi Sami, Parks Lisa, Lynch Dustin, Silverman Ross D, Fortenberry J Dennis
Division of Children's Health Services Research, Department of Pediatrics, Indiana University School of Medicine.
Research Jam, Indiana Clinical and Translation Sciences Institute.
Res Sq. 2024 Oct 18:rs.3.rs-4999642. doi: 10.21203/rs.3.rs-4999642/v1.
Though social determinants are the primary drivers of health, few studies of people living with HIV (PLWH) focus on non-clinical correlates of insecure and/or fragmented connections with the care system. Our team has used linked clinical and multisector non-clinical data to study how residential mobility and connection to social services influence the HIV care continuum. We engage a diverse group of invested patients and community members to guide and inform this research. Our objective is to generate stakeholder-informed, research-based interventions that are relevant to the community, and to share our engagement approach and findings so that other researchers can do the same.
Our research team partnered with the Indiana Clinical and Translational Sciences Institute's Research Jam, to develop and implement a human-centered design research plan to engage with individuals with lived experience relevant to our research. We recruited a panel composed of PLWH as well as clinicians and individuals from agencies that provide medical and non-medical services to PLWH in Marion County, Indiana. We used a variety of human-centered design tools and activities to engage individuals during six sessions, with results informing our engagement and research activities.
Since the inception of the project, 48 individuals have joined the stakeholder panel. Thirty-five are actively engaged and have participated in one or more of the six sessions conducted to date. The panel helped guide and prioritize analyses, aided in identification of data missing from our ecosystem, helped interpret results, provided feedback on future interventions, and co-presented with us at a local health equity conference.
We utilized community engagement to expand the scope of our research and found that the process provided value to both stakeholders and research team members. Human-centered design enhanced this partnership by keeping it person-centered, developing empathy and trust, increasing stakeholder retention, and empowering stakeholders to collaborate meaningfully with the research team. The use of these methods is essential to conducting relevant, impactful, and sustainable research. We anticipate that these methods will be important for academic and public health researchers wishing to engage with and integrate the ideas of community stakeholders.
尽管社会决定因素是健康的主要驱动因素，但针对艾滋病毒感染者（PLWH）的研究很少关注与医疗系统的不安全和/或分散联系的非临床相关因素。我们的团队利用临床和多部门非临床关联数据，研究居住流动性和与社会服务的联系如何影响艾滋病毒护理连续过程。我们让不同的有参与意愿的患者和社区成员参与进来，以指导和为这项研究提供信息。我们的目标是制定基于研究且与社区相关的、由利益相关者提供信息的干预措施，并分享我们的参与方法和研究结果，以便其他研究人员也能这样做。
我们的研究团队与印第安纳临床与转化科学研究所的研究研讨会合作，制定并实施了一项以人为本的设计研究计划，以与具有与我们研究相关生活经历的个人进行互动。我们招募了一个由艾滋病毒感染者、临床医生以及来自印第安纳州马里恩县为艾滋病毒感染者提供医疗和非医疗服务的机构的人员组成的小组。我们使用了各种以人为本的设计工具和活动，在六个环节中与个人进行互动，结果为我们的参与和研究活动提供了信息。
自项目启动以来，已有48人加入了利益相关者小组。35人积极参与，并参加了迄今为止进行的六次会议中的一次或多次。该小组帮助指导分析并确定优先次序，协助识别我们生态系统中缺失的数据，帮助解释结果，为未来的干预措施提供反馈，并与我们一起在当地的健康公平会议上共同展示。
我们利用社区参与来扩大研究范围，发现这个过程对利益相关者和研究团队成员都有价值。以人为本的设计通过保持以人为主、培养同理心和信任、提高利益相关者的留存率以及使利益相关者有能力与研究团队进行有意义的合作，增强了这种伙伴关系。使用这些方法对于开展相关、有影响力和可持续的研究至关重要。我们预计，这些方法对于希望与社区利益相关者互动并整合其想法的学术和公共卫生研究人员将很重要。
