Communities organizing to promote equity: engaging local communities in public health responses to health inequities exacerbated by COVID-19-protocol paper.

Background: The COVID-19 pandemic has disproportionately impacted rural and under-resourced urban communities in Kansas. The state's response to COVID-19 has relied on a highly decentralized and underfunded public health system, with 100 local health departments in the state, few of which had prior experience engaging local community coalitions in a coordinated response to a public health crisis. Methods: To improve the capacity for local community-driven responses to COVID-19 and other public health needs, the University of Kansas Medical Center, in partnership with the Kansas Department of Health and Environment, will launch Communities Organizing to Promote Equity (COPE) in 20 counties across Kansas. COPE will establish Local Health Equity Action Teams (LHEATs), coalitions comprised of community members and service providers, who work with COPE-hired community health workers (CHWs) recruited to represent the diversity of the communities they serve. CHWs in each county are tasked with addressing unmet social needs of residents and supporting their county's LHEAT. LHEATs are charged with implementing strategies to improve social determinants of health in their county. Monthly, LHEATs and CHWs from all 20 counties will come together as part of a learning collaborative to share strategies, foster innovation, and engage in peer problem-solving. These efforts will be supported by a multilevel communications strategy that will increase awareness of COPE activities and resources at the local level and successes across the state. Our mixed methods evaluation design will assess the processes and impact of COPE activities as well as barriers and facilitators to implementation using aspects of both the Consolidated Framework for Implementation Research (CFIR) and Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) models. Discussion: This protocol is designed to expand community capacity to strategically partner with local public health and social service partners to prioritize and implement health equity efforts. COPE intentionally engages historically resilient communities and those living in underserved rural areas to inform pragmatic strategies to improve health equity.

The Impact of the COVID-19 Pandemic on Patient Disparities in Long-Term Opioid Therapy.

BACKGROUND: The COVID-19 pandemic disrupted how primary care patients with chronic pain received care. Our study sought to understand how long-term opioid therapy (LtOT) for chronic pain changed over the course of the pandemic overall and for different demographic subgroups. METHODS: We used data from electronic health records of 64 primary care clinics across Washington state and Idaho to identify patients who had a chronic pain diagnosis and were receiving long-term opioid therapy. We defined 10-month periods in 2019 to 2021 as prepandemic, early pandemic and late pandemic and used generalized estimating equations analysis to compare across these time periods and demographic characteristics. RESULTS: We found a proportional decrease in LtOT for chronic pain in the early months of the pandemic (OR = 0.94, P = .007) followed by an increase late pandemic (OR = 1.08, P = .002). Comparing late pandemic to prepandemic, identifying as Asian or Black, having fewer comorbidities, or living in an urban area were associated with higher likelihood of being prescribed LtOT. DISCUSSION: The use of LtOT for chronic pain in primary care has increased from before to after the COVID-19 pandemic with racial/ethnic and geographic disparities. Future research is needed to understand these disparities in LtOT and their effect on patient outcomes.

Assessing Social Needs and Engaging Community Health Workers in Underserved Kansas Counties: Insights From Primary Care Providers and Clinic Managers.

INTRODUCTION: Rural and under-resourced urban communities face unique challenges in addressing patients' social determinants of health needs (SDoH). Community health workers (CHWs) can support patients experiencing social needs, yet little is known about how rural and under-resourced primary care clinics are screening for SDoH or utilizing CHWs. METHODS: Interviews were conducted with primary care clinic providers and managers across a geographically large and predominately rural state to assess screening practices for SDoH and related community resources, and perspectives on using CHWs to address SDoH. Interviews were conducted by phone, recorded, and transcribed. Data were analyzed using thematic analysis. We completed interviews with 27 respondents (12 providers and 15 clinic managers) at 26 clinics. RESULTS: Twelve (46.1%) clinics had a standardized process for capturing SDoH, but this was primarily limited to Medicare wellness visits. Staffing and time were identified as barriers to proper SDoH screening. Lack of transportation and affordable medication were the most cited SDoH. While respondents were all aware of CHWs, only 8 (30.8%) included a CHW on their care team. Perceived barriers to engaging CHWs included cost, space, and availability of qualified CHWs. Perceived benefits of engaging CHWs in their practice were: assisting patients with navigating resources and programs, relieving clinical staff of non-medical tasks, and bridging language barriers. CONCLUSIONS: Rural and under-resourced primary care clinics need help in identifying and addressing SDoH. CHWs could play an important part in addressing social needs and promoting preventive care if financial constraints could be addressed and local CHWs could be trained.

Refugee and migrants' involvement in participatory spaces in a US practice-based research network study: Responding to unanticipated priorities.

BACKGROUND: Refugees and migrants face suboptimal involvement in spaces for primary healthcare decision-making. Given the rising numbers of resettled refugees and migrants in primary care settings in the United States, there is an urgent need for patient-centred outcome research in practice-based research networks (PBRNs) with diverse ethnolinguistic communities. This study explored whether researchers, clinicians and patients would achieve consensus on (1) a common set of clinical problems that were applicable across a PBRN and (2) potential clinical interventions to address those problems to inform a patient-centred outcomes research (PCOR) study in a similar research network. METHODS: In this qualitative participatory health research study, patients from diverse ethnolinguistic communities and clinicians from seven practices in a US PBRN discussed preferences for PCOR responsive to patients and the clinicians who serve them in language-discordant settings. Researchers and an advisory panel that included patients and clinicians from each participating practice held regular advisory meetings to monitor progress on project milestones and solve emerging problems. Participants took part in 10 sessions using Participatory Learning in Action and the World Café methods to identify and prioritise their ideas, using questions set for them by the advisory panel. Data were analysed based on principles of qualitative thematic content analysis. RESULTS: Participants identified common barriers in language-discordant healthcare settings, principally patient-clinician communication barriers and suggestions to overcome these barriers. A key finding was an unanticipated consensus about the need for attention to healthcare processes rather than a clinical research priority. Negotiation with research funders enabled further analysis of potential interventions for care processes to improve communication and shared decision-making in consultations and the practice as a whole. CONCLUSION: PCOR studies should examine interventions for improving communication between patients from diverse ethnolinguistic communities and primary care staff if the sorts of harms experienced by patients experiencing language-discordant healthcare are to be reduced or prevented. Flexibility and responsiveness from funders to unanticipated findings are key structural supports for participatory health research in primary care clinical settings with this population and others who experience marginalisation and exclusion. PATIENT OR PUBLIC CONTRIBUTION: Patients and clinicians participated in the study both in the formulation of the study question, data collection, analysis and dissemination of these results; consented to their individual participation; and reviewed early drafts of the manuscript.

Understanding Medication Adherence in Bhutanese Refugees With Diabetes in a Midwestern City.

INTRODUCTION: Bhutanese refugees have a higher prevalence of type 2 diabetes but are less likely to achieve medication adherence and glycemic control. The purpose of this project was to understand factors affecting diabetes medication adherence in this population. METHODOLOGY: This was a qualitative project using focus groups of adult Bhutanese refugees with type 2 diabetes ≥18 years old and hemoglobin A1C ≥8% and their caregivers from a family medicine clinic at the University of Kansas. Data were analyzed using content analysis. RESULTS: A total of 23 individuals participated. Three themes emerged from data analysis: desire to engage in care but face multiple barriers, family and community support invaluable for health, and considerations for culturally contextual person-centered care. Participants provided specific recommendations to address the barriers, with emphasis on improving health literacy. DISCUSSION: Integrating the identified factors can foster person-centered, culturally congruent care to improve diabetes medication adherence in Bhutanese refugees.

The impact of economic recession on the health of migrant fathers over time: results from the Growing up in Ireland longitudinal study.

BACKGROUND: The relationship between economic conditions and health can depend on both the health outcome measured and the composition of the population. Analysis of outcomes by both ethnicity and country of birth has been recommended. The aim of our study is to explore the impact of recession on self-rated health and depression of migrant fathers in Ireland over time, considering both ethnicity and country of birth. METHODS: Longitudinal data from waves of a population-representative cohort study (Growing up in Ireland, 2008-2013) was used with Wave 1 collected before the recession and Wave 2 collecting information on how the recession affected families. Socio-demographic variables, self-rated health and depression were compared across three groups of fathers classified by self-identified ethnicity and country of birth: White Irish (n = 5628), Other White European (EU-10) (n = 431), and Black African (n = 192) using chi-square tests and logistic regression models. Rates of follow-up were compared across groups at Wave 3. RESULTS: Prior to the recession, the rate of employment was lowest for African fathers (51% vs 81% for EU-10 fathers and 92% for Irish fathers, p < 0.001). At Wave 2, African families were more likely to have experienced a very significant effect of the recession (40.1% compared to 22.4% for families from EU-10 and 21.3% for Irish families, p < 0.001). However, the impact of the recession on depression and self-rated health was only found in Irish fathers. By Wave 3, rates of follow-up were lower for migrant fathers, particularly for EU-10 fathers. CONCLUSIONS: Understanding the relationship between economic conditions and health is complex and may be related to multiple dimensions of socio-economic advantage and disadvantage. African families were already more likely to be disadvantaged prior to the recession and that pattern persisted during the recession. Further research on attrition rates of migrants in population cohort studies is needed and the development of effective strategies for recruitment, follow-up and analysis.

Acceptance of COVID-19 Vaccination Among Health System Personnel.

INTRODUCTION: One-third of the general public will not accept Coronavirus disease 2019 (COVID-19) vaccination but factors influencing vaccine acceptance among health care personnel (HCP) are not known. We investigated barriers and facilitators to vaccine acceptance within 3 months of regulatory approval (primary outcome) among adult employees and students at a tertiary-care, academic medical center. METHODS: We used a cross-sectional survey design with multivariable logistic regression. Covariates included age, gender, educational attainment, self-reported health status, concern about COVID-19, direct patient interaction, and prior influenza immunization. RESULTS: Of 18,250 eligible persons, 3,347 participated. Two in 5 (40.5%) HCP intend to delay (n = 1020; 30.6%) or forgo (n = 331; 9.9%) vaccination. Male sex (adjusted OR [aOR], 2.43; 95% confidence interval [CI], 2.00-2.95; P < .001), prior influenza vaccination (aOR, 2.35; 95% CI, 1.75-3.18; P < .001), increased concern about COVID-19 (aOR, 2.40; 95% CI, 2.07-2.79; P < .001), and postgraduate education (aOR, 1.41; 95% CI, 1.21-1.65; P < .001) - but not age, direct patient interaction, or self-reported overall health - were associated with vaccine acceptance in multivariable analysis. Barriers to vaccination included concerns about long-term side effects (n = 1197, 57.1%), safety (n = 1152, 55.0%), efficacy (n = 777, 37.1%), risk-to-benefit ratio (n = 650, 31.0%), and cost (n = 255, 12.2%).Subgroup analysis of Black respondents indicates greater hesitancy to accept vaccination (only 24.8% within 3 months; aOR 0.13; 95% CI, 0.08-0.21; P < .001). CONCLUSIONS: Many HCP intend to delay or refuse COVID-19 vaccination. Policymakers should impartially address concerns about safety, efficacy, side effects, risk-to-benefit ratio, and cost. Further research with minority subgroups is urgently needed.

'If relevant, yes; if not, no': General practitioner (GP) users and GP perceptions about asking ethnicity questions in Irish general practice: A qualitative analysis using Normalization Process Theory.

CONTEXT: The use of ethnic identifiers in health systems is recommended in several European countries as a means to identify and address heath inequities. There are barriers to implementation that have not been researched. OBJECTIVE: This study examines whether and how ethnicity data can be collected in Irish general practices in a meaningful and acceptable way. METHODS: Qualitative case study data generation was informed by Normalization Process Theory (NPT) constructs about 'sense' making and 'engagement'. It consisted of individual interviews and focus group discussions based on visual participatory techniques. There were 70 informants, including 62 general practitioner (GP) users of diverse ethnic backgrounds recruited through community organisations and eight GPs identified through an inter-agency steering group. Data were analysed according to principles of thematic analysis using NPT. RESULTS: The link between ethnicity and health was often considered relevant because GP users grasped connections with genetic (skin colour, lactose intolerance), geographic (prevalence of disease, early years exposure), behavioural (culture/food) and social determinant (housing) factors. The link was less clear with religion. There was some scepticism and questions about how the collection of data would benefit GP consultations and concerns regarding confidentiality and the actual uses of these data (e.g. risk of discrimination, social control). For GPs, the main theme discussed was relevance: what added value would it bring to their consultations and was it was their role to collect these data? Their biggest concern was about data protection issues in light of the European Union (EU) General Data Protection Regulation (GDPR). The difficulty in explaining a complex concept such as 'ethnicity' in the limited time available in consultations was also worrying. CONCLUSIONS: Implementation of an ethnicity identifier in Irish general practices will require a strong rationale that makes sense to GP users, and specific measures to ensure that its benefits outweigh any potential harm. This is in line with both our participants' views and the EU GDPR.

Participatory health research with migrants: Opportunities, challenges, and way forwards.

CONTEXT: Migration is one of the most politically pressing issues of the 21st century but migrant health remains an under-researched area. The International Collaboration for Participatory Health Research (ICPHR) working group on migration developed this position statement to address opportunities and challenges in relation to migrant health. It aims to contribute to a shift from a deficit model that sees migrants as passively affected by policies to their reconceptualization as citizens who are engaged in the co-creation of solutions. METHODS: This paper examines the opportunities and challenges posed by the use of PHR with migrants. It draws on a broad literature to provide examples of successful PHR with migrants and highlights critical issues for consideration. FINDINGS: Successful initiatives illustrate the value of engaging migrants in the definition of the research agenda, the design and implementation of health interventions, the identification of health-protective factors and the operationalization and validation of indicators to monitor progress. Within increasingly super diverse contexts, fragmented community landscapes that are not necessarily constructed along ethnicity traits, inadequate structures of representation, local tensions and operational barriers can hamper meaningful PHR with migrants. CONCLUSION: For each research context, it is essential to gauge the 'optimal' level and type of participation that is more likely to leverage migrants' empowerment. The development of Monitoring and Evaluation tools and methodological strategies to manage inter-stakeholder discrepancies and knowledge translation gaps are steps in this direction. PATIENT OR PUBLIC CONTRIBUTION: This paper draws from contributions of migrant populations and other stakeholders to policymaking.

Participatory implementation research in the field of migrant health: Sustainable changes and ripple effects over time.

OBJECTIVE: This study aimed to explore whether positive impacts were sustained and unanticipated ripple effects had occurred four years after the implementation of interventions to improve cross-cultural communication in primary care. BACKGROUND: Sustaining the implementation of change using complex interventions is challenging. The EU-funded "RESTORE" study implemented guidelines and training on cross-cultural communication in five Primary Care sites in Europe, combining implementation theory (Normalisation Process Theory) with participatory methodology (participatory learning and action-PLA). There were positive impacts on knowledge, skills and clinical routines. DESIGN, SETTING AND PARTICIPANTS: Four of the five original sites (England, Ireland, Greece, The Netherlands) were available for this qualitative follow-up study. The study population (N = 44) was primary healthcare staff and migrants, most of whom had participated in RESTORE. INTERVENTION; MAIN OUTCOME MEASURES: PLA-style focus groups and interviews explored routine practice during consultations with migrants. Etic cards based on the effects of RESTORE stimulated the discussion. Deductive framework analysis was performed in each country followed by comparative data analysis and synthesis. RESULTS: Changes in knowledge, attitudes and behaviour with regard to consultations with migrants were sustained and migrants felt empowered by their participation in RESTORE. There were ongoing concerns about macro level factors, like the political climate and financial policies, negatively affecting migrant healthcare. CONCLUSION: There were sustained effects in clinical settings, and additional unanticipated positive ripple effects, due in part, from the participatory approach employed.

Exploring Lived Experiences of Chronic Pain Through Photo-Elicitation and Social Networking.

OBJECTIVE: To understand how patients' use of photo-elicitation and online social networks (Facebook) enhances their understanding of what it means to live with pain. DESIGN: Qualitative substudy of the intervention arm of a randomized trial. SETTING/SUBJECTS: Primary care patients living with pain drawn from nine family practices with at least two pain visits in the last six months. METHODS: The private Facebook group was co-facilitated by a moderator and a patient-investigator who lives with chronic pain. Patients were asked to share photos that elicit their lived experience with chronic pain, and facilitators guided participants in ongoing discussion about these photos, and thus the life with pain. Facebook discussions were analyzed via Dedoose (a qualitative analysis software) using thematic analysis. RESULTS: Discussions of photos elicited three overarching themes regarding patients' lived experience with chronic pain: 1) patients' redefined pain identity; 2) pain interference with enjoyment of life and activities; and 3) patients' diminished ability to function. CONCLUSIONS: Photo-elicitation is an innovative way to shed light on patients' lived experience with chronic pain. Despite some technical challenges, Facebook support groups utilizing photo-elicitation can provide a readily available platform that can facilitate interchange of patient experiences and might help patients communicate with their providers.

Acculturation and post-migration psychological symptoms among Iraqi refugees: A path analysis.

Refugees frequently experience symptoms of posttraumatic stress and depression, which impede their acculturation in the new host country where they are resettling. There are few longitudinal studies investigating predictors of mental health and acculturation during the early postmigration period. We conducted a longitudinal study of 298 Iraqi refugees, assessing them upon arrival to the U.S. and 1 year after migration. Premigration trauma was associated with increased PTSD and depressive symptoms at baseline, and with decreased acculturation 1 year later. Resilience was associated with depressive symptoms at 1-year follow-up, but not with other resettlement outcomes (PTSD symptoms, English-language skills, or acculturation). PTSD and depressive symptoms at baseline predicted the same symptoms at 1-year follow-up, but not any other resettlement outcomes. The number of chronic diseases at baseline predicted worse PTSD and depressive symptoms, acculturation, and English language skills at 1-year follow up. Postmigratory exposure to daily stressors and less social support predicted worse 1-year outcomes. Results suggest that interventions that aim to improve mental health and promote acculturation among refugees should assess their history of trauma, chronic disorders, and psychological symptoms soon after migration, and promptly provide opportunities for social support. (PsycINFO Database Record

Tokenism in patient engagement.

Background: Patient engagement throughout research is a way to generate more relevant patient-important research questions, methods and results with the ultimate aim of facilitating translation of research into practice. Tokenism is defined as the practice of making perfunctory or symbolic efforts to engage communities or patients. Objective: We wanted to explore how tokenism might influence engaging patients in research to help researchers work towards more genuine engagement. Methods: The Community Clinician Advisory Group and Patient and Clinician Engagement program held a workshop at the 2015 North American Primary Care Research Group meeting titled 'How Do We Move beyond Tokenism in Patient Engagement?' Patients, clinicians and academic researchers contributed examples of genuine and token engagement characteristics based on personal experience and knowledge. Data were iteratively collated and categorized into domains and items. Results: Examples of genuine and token engagement were categorized into three domains: Methods/Structure of engagement, Intent and Relationship building. Members with experience in patient-engaged research projects felt that longitudinal engagement was a key element to effectively translating research into local community and practice. Conclusions: The group (i) highly valued genuine intent and relationship building as elements to combat tokenism; (ii) noted that early genuine attempts at engagement may superficially resemble tokenism as researchers build enduring and trusting relationships with patient/community partners and (iii) emphasized the importance of seeking and utilizing patient experiences throughout research. These observations may contribute to more formal methods to help researchers (and reviewers) evaluate where engagement processes sit along the 'genuine-token' continuum.

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

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.

Engaging with communities, engaging with patients: amendment to the NAPCRG 1998 Policy Statement on Responsible Research With Communities.

Background: In 1998, the North American Primary Care Research Group (NAPCRG) adopted a groundbreaking Policy Statement endorsing responsible participatory research (PR) with communities. Since that time, PR gained prominence in primary care research. Objectives: To reconsider the original 1998 Policy Statement in light of increased uptake of PR, and suggest future directions and applications for PR in primary care. This work contributed to an updated Policy Statement endorsed by NAPCRG in 2015. Methods: 32 university and 30 community NAPCRG-affiliated research partners, convened a workshop to document lessons learned about implementing processes and principles of PR. This document emerged from that session and reflection and discussion regarding the original Policy Statement, the emerging PR literature, and our own experiences. Results: The foundational principles articulated in the 1998 Policy Statement remain relevant to the current PR environment. Lessons learned since its publication include that the maturation of partnerships is facilitated by participatory processes that support increased community responsibility for research projects, and benefits generated through PR extend beyond research outcomes. Future directions that will move forward the field of PR in primary care include: (i) improve assessment of PR processes to better delineate the links between how PR teams work together and diverse PR outcomes, (ii) increase the number of models incorporating PR into translational research from project inception to dissemination, and (iii) increase application of PR approaches that support patient engagement in clinical settings to patient-provider relationship and practice change research. Conclusion: PR has markedly altered the manner in which primary care research is undertaken in partnership with communities and its principles and philosophies continue to offer means to assure that research results and processes improve the health of all communities.

Pilot Study of Exercise Therapy on Painful Diabetic Peripheral Neuropathy.

OBJECTIVE: Painful diabetic peripheral neuropathy (DPN) is a common complication of diabetes. While the beneficial effect of exercise on diabetes is well established, its effect specifically on painful DPN has not been thoroughly explored. The objective of this pilot study was to examine the effect of aerobic exercise on pain in people with DPN. METHODS: Fourteen sedentary individuals (mean age 57 ± 5.11 years) with painful DPN were enrolled in a 16-week, supervised aerobic exercise program. The Brief Pain Inventory-Diabetic Peripheral Neuropathy was used to assess pain intensity (worst, least, average, now) and pain interference with daily life (activity, mood, walk, normal work, relationship, sleep, enjoyment of life) pre intervention and postintervention. Body mass index (BMI), maximum oxygen uptake (VO2max ), hemoglobin A1c (HbA1c), and blood pressure were also measured preintervention and postintervention as secondary outcomes of interest. RESULTS: Significant reductions in pain interference were observed with walking (4.93 ± 3.03 pre to 3.29 ± 2.89 post, P = 0.016), normal work (5.39 ± 3.32 pre to 3.79 ± 3.04 post, P = 0.032), relationship with others (3.96 ± 3.53 pre to 1.29 ± 1.27 post, P = 0.006), sleep (5.11 ± 3.04 pre to 3.5 ± 3.03 post, P = 0.02), and the overall pain interference (4.65 ± 2.70 pre to 2.97 ± 2.22 post, P = 0.013) following the intervention; however, there was no change in pain intensity. VO2max increased significantly postintervention (16.02 ± 3.84 ml/kg/min pre to 17.18 ± 4.19 ml/kg/min, P = 0.028), while BMI, HbA1c, and blood pressure remained unchanged. CONCLUSION: These preliminary results suggest that perceived pain interference may be reduced following an aerobic exercise intervention among people with painful DPN, without a change in pain intensity. Further validation by a RCT is needed.