Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

Stakeholder engagement has become widely accepted as a necessary component of guideline development and implementation. While frameworks for developing guidelines express the need for those potentially affected by guideline recommendations to be involved in their development, there is a lack of consensus on how this should be done in practice. Further, there is a lack of guidance on how to equitably and meaningfully engage multiple stakeholders. We aim to develop guidance for the meaningful and equitable engagement of multiple stakeholders in guideline development and implementation. METHODS: This will be a multi-stage project. The first stage is to conduct a series of four systematic reviews. These will (1) describe existing guidance and methods for stakeholder engagement in guideline development and implementation, (2) characterize barriers and facilitators to stakeholder engagement in guideline development and implementation, (3) explore the impact of stakeholder engagement on guideline development and implementation, and (4) identify issues related to conflicts of interest when engaging multiple stakeholders in guideline development and implementation. DISCUSSION: We will collaborate with our multiple and diverse stakeholders to develop guidance for multi-stakeholder engagement in guideline development and implementation. We will use the results of the systematic reviews to develop a candidate list of draft guidance recommendations and will seek broad feedback on the draft guidance via an online survey of guideline developers and external stakeholders. An invited group of representatives from all stakeholder groups will discuss the results of the survey at a consensus meeting which will inform the development of the final guidance papers. Our overall goal is to improve the development of guidelines through meaningful and equitable multi-stakeholder engagement, and subsequently to improve health outcomes and reduce inequities in health

Improving Social Justice in COVID-19 Health Research: Interim guidelines for reporting health equity in observational studies

The COVID-19 pandemic has highlighted the global imperative to address health inequities. Observational studies are a valuable source of evidence for real-world effects and impacts of implementing COVID-19 policies on the redistribution of inequities. We assembled a diverse global multi-disciplinary team to develop interim guidance for improving transparency in reporting health equity in COVID-19 observational studies. We identified 14 areas in the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) checklist that need additional detail to encourage transparent reporting of health equity. We searched for examples of COVID-19 observational studies that analysed and reported health equity analysis across one or more social determinants of health. We engaged with Indigenous stakeholders and others groups experiencing health inequities to co-produce this guidance and to bring an intersectional lens. Taking health equity and social determinants of health into account contributes to the clinical and epidemiological understanding of the disease, identifying specific needs and supporting decision-making processes. Stakeholders are encouraged to consider using this guidance on observational research to help provide evidence to close the inequitable gaps in health outcomes

Reporting of equity in observational epidemiology: a methodological review

Background Observational studies can inform how we understand and address persisting health inequities through the collection, reporting and analysis of health equity factors. However, the extent to which the analysis and reporting of equity-relevant aspects in observational research are generally unknown. Thus, we aimed to systematically evaluate how equity-relevant observational studies reported equity considerations in the study design and analyses. Methods We searched MEDLINE for health equity-relevant observational studies from January 2020 to March 2022, resulting in 16 828 articles. We randomly selected 320 studies, ensuring a balance in focus on populations experiencing inequities, country income settings, and coronavirus disease 2019 (COVID-19) topic. We extracted information on study design and analysis methods. Results The bulk of the studies were conducted in North America (n = 95, 30%), followed by Europe and Central Asia (n = 55, 17%). Half of the studies (n = 171, 53%) addressed general health and well-being, while 49 (15%) focused on mental health conditions. Two-thirds of the studies (n = 220, 69%) were cross-sectional. Eight (3%) engaged with populations experiencing inequities, while 22 (29%) adapted recruitment methods to reach these populations. Further, 67 studies (21%) examined interaction effects primarily related to race or ethnicity (48%). Two-thirds of the studies (72%) adjusted for characteristics associated with inequities, and 18 studies (6%) used flow diagrams to depict how populations experiencing inequities progressed throughout the studies. Conclusions Despite over 80% of the equity-focused observational studies providing a rationale for a focus on health equity, reporting of study design features relevant to health equity ranged from 0–95%, with over half of the items reported by less than one-quarter of studies. This methodological study is a baseline assessment to inform the development of an equity-focussed reporting guideline for observational studies as an extension of the well-known Strengthening Reporting of Observational Studies in Epidemiology (STROBE) guideline

Connecting Primary Care Patients to Community Resources: Lessons Learned From the Development of a New Lay Primary Care Team Role

Background/Aims: Social determinants of health play a critical role in both the prevalence and outcomes of a wide range of chronic illnesses. The growing recognition of both the role that social determinants play in population health outcomes and the need to address these requires stronger partnerships between primary care teams and community organizations. In support of this goal, the Learning to Integrate Neighborhoods and Clinical Care (LINCC) project, funded by the Patient-Centered Outcomes Research Institute and implemented at Group Health, convened patients and staff to co-design a new role on the primary care team aimed at helping patients better connect with community resources through one-on-one coaching and follow-up. We implemented this program in three pilot clinics to assess the challenge of incorporating this new team member into primary care practices and the potential impact this program would have if scaled to the entire delivery system. Methods: We used a mixed-methods approach to document and evaluate the design and implementation of this new role. Data collection included patient surveys, review of electronic health record documentation, site visits, staff interviews and patient focus groups. Results: We will present a case study on the implementation and evaluation of this role (analysis in progress) with a focus on findings and lessons learned that will enable others to learn from or replicate this pilot. Our findings will include documentation of the patient-centered design and specific scope of work for the role, its integration into the primary care team, and specific tools and approaches developed. We also will report process measures including patient volume, descriptions of the patients served, percentage of patients who completed an action plan, progress made toward accomplishing goals, resources referred and used, and patient satisfaction with the services received. Conclusion: The LINCC project helped patients connect to community resources by providing deep knowledge of local resources, personalized coaching, goal setting and follow-up, and an ongoing connection to the primary care team. Preliminary findings highlight the challenges and successes associated with implementing this role and show promising results in terms of patient receptivity and satisfaction with the service

Connecting Primary Care Patients to Community Resources: Lessons Learned From the Development of a New Lay Primary Care Team Role

Background/Aims: Social determinants of health play a critical role in both the prevalence and outcomes of a wide range of chronic illnesses. The growing recognition of both the role that social determinants play in population health outcomes and the need to address these requires stronger partnerships between primary care teams and community organizations. In support of this goal, the Learning to Integrate Neighborhoods and Clinical Care (LINCC) project, funded by the Patient-Centered Outcomes Research Institute and implemented at Group Health, convened patients and staff to co-design a new role on the primary care team aimed at helping patients better connect with community resources through one-on-one coaching and follow-up. We implemented this program in three pilot clinics to assess the challenge of incorporating this new team member into primary care practices and the potential impact this program would have if scaled to the entire delivery system. Methods: We used a mixed-methods approach to document and evaluate the design and implementation of this new role. Data collection included patient surveys, review of electronic health record documentation, site visits, staff interviews and patient focus groups. Results: We will present a case study on the implementation and evaluation of this role (analysis in progress) with a focus on findings and lessons learned that will enable others to learn from or replicate this pilot. Our findings will include documentation of the patient-centered design and specific scope of work for the role, its integration into the primary care team, and specific tools and approaches developed. We also will report process measures including patient volume, descriptions of the patients served, percentage of patients who completed an action plan, progress made toward accomplishing goals, resources referred and used, and patient satisfaction with the services received. Conclusion: The LINCC project helped patients connect to community resources by providing deep knowledge of local resources, personalized coaching, goal setting and follow-up, and an ongoing connection to the primary care team. Preliminary findings highlight the challenges and successes associated with implementing this role and show promising results in terms of patient receptivity and satisfaction with the service

Guidance relevant to the reporting of health equity in observational research: a scoping review protocol.

INTRODUCTION: Health inequities are defined as unfair and avoidable differences in health between groups within a population. Most health research is conducted through observational studies, which are able to offer real-world insights about etiology, healthcare policy/programme effectiveness and the impacts of socioeconomic factors. However, most published reports of observational studies do not address how their findings relate to health equity. Our team seeks to develop equity-relevant reporting guidance as an extension of the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement. This scoping review will inform the development of candidate items for the STROBE-Equity extension. We will operationalise equity-seeking populations using the PROGRESS-Plus framework of sociodemographic factors. As part of a parallel stream of the STROBE-Equity project, the relevance of candidate guideline items to Indigenous research will be led by Indigenous coinvestigators on the team. METHODS AND ANALYSIS: We will follow the Joanna Briggs Institute method for conducting scoping reviews. We will evaluate the extent to which the identified guidance supports or refutes our preliminary candidate items for reporting equity in observational studies. These candidate items were developed based on items from equity-reporting guidelines for randomised trials and systematic reviews, developed by members of this team. We will consult with our knowledge users, patients/public partners and Indigenous research steering committee to invite suggestions for relevant guidance documents and interpretation of findings. If the identified guidance suggests the need for additional candidate items, they will be developed through inductive thematic analysis. ETHICS AND DISSEMINATION: We will follow a principled approach that promotes ethical codevelopment with our community partners, based on principles of cultural safety, authentic partnerships, addressing colonial structures in knowledge production and the shared ownership, interpretation, and dissemination of research. All products of this research will be published as open access

A scoping review establishes need for consensus guidance on reporting health equity in observational studies

Objective To evaluate the support from the available guidance on reporting of health equity in research for our candidate items and to identify additional items for the STROBE (Strengthening Reporting of Observational studies in Epidemiology)-Equity extension. Study design and setting We conducted a scoping review by searching Embase, MEDLINE, CINAHL, Cochrane Methodology Register, LILACS, and Caribbean Centre on Health Sciences Information up to January 2022. We also searched reference lists and grey literature for additional resources. We included guidance and assessments (hereafter termed “resources”) related to conduct and/or reporting for any type of health research with or about people experiencing health inequity. Results We included thirty-four resources, which supported one or more candidate items or contributed to new items about health equity reporting in observational research. Each candidate item was supported by a median of six (range: 1 - 15) resources. In addition, 12 resources suggested 13 new items, such as “report the background of investigators”. Conclusions Existing resources for reporting health equity in observational studies aligned with our interim checklist of candidate items. We also identified additional items that will be considered in the development of a consensus- and evidence-based guideline for reporting health equity in observational studies