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1.
J Glob Health ; 13: 06016, 2023 Jun 09.
Article in English | MEDLINE | ID: covidwho-20235866

ABSTRACT

Background: To bolster country efforts towards meeting the targets and strategies laid out in WHO's report "Strategies toward ending preventable maternal mortality" (EPMM), a series of seven consultations, known as National Dialogues, were conducted to better understand national priority areas for the improvement of maternal health and to support the adoption and use of EPMM indicators at the national level. The last Dialogue was conducted in March 2020, as the COVID-19 pandemic was beginning to have global impacts. We aimed to explore the circumstantial challenges and opportunities that countries have encountered in meeting the specific stakeholder commitments made in each country by National Dialogue participants during the COVID-19 pandemic. Methods: We based our study methodology on outcome harvesting, a qualitative approach that examines how incremental change contributes towards achieving a specified outcome. It collects evidence on what has changed and then works backwards to determine whether and how a programme or intervention led to the observed changes. We collected data from 20 participants in five countries (Bangladesh, India, Mexico, Nigeria, and Pakistan) through key informant interviews and focus group discussions. We analysed the data through inductive coding focused on emergent themes. Results: The onset of the global COVID pandemic overturned plans and upended health systems, bringing new opportunities in some countries and halting progress towards the agenda outlined in the National Dialogue elsewhere. Participants identified adaptations that facilitated continued progress, such as shifting the locus of advocacy and activity from national to sub-national focal areas, catalytic changes in response to the crisis (including the development and improvement of digital communication and data technology), and increased awareness of the importance of identified priorities (including a human rights approach to maternal health). Conclusions: Our data suggest that the priorities for maternal health system performance to drive improvement toward ending preventable maternal deaths and the advocacy commitments designed to increase the relevance of upstream policy and health system-level determinants of maternal health and survival have retained their urgency during the COVID-19 pandemic.


Subject(s)
COVID-19 , Pandemics , Female , Humans , Pandemics/prevention & control , Stakeholder Participation , COVID-19/epidemiology , Maternal Health , Maternal Mortality
2.
JAMA Otolaryngol Head Neck Surg ; 147(6): 577, 2021 06 01.
Article in English | MEDLINE | ID: covidwho-2267668
3.
Ann Fam Med ; (20 Suppl 1)2022 04 01.
Article in English | MEDLINE | ID: covidwho-2283590

ABSTRACT

In May 2020 A COVID-19 Community Research Partnership, a surveillance study aimed at learning about the spread of the COVID-19 virus in local communities and among healthcare workers, began. Recognizing the disproportionate impact of COVID-19 on low-income and racial/ethnic minority groups, recruitment strategies that enabled diverse representation and engagement were used. We describe a community based participatory approach to engage a stakeholder advisory board to guide recruitment and data collection. Study Design was a community based participatory research study. Approximately 30 participants comprise the SAB. The study recruits participants from a large metropolitan area, and Atrium Health, a large, vertically integrated, not-for-profit healthcare system. Population Studied >12,000 community participants Outcome Measures recruitment and demographics of participants Results With SAB guidance we recruited >12,000 participants. The highly engaged stakeholders provided valuable input to guide the development of recruitment materials (¬flyers, emails, social media, websites, videos); use of incentives (free phones to complete the online symptom survey); and community outreach opportunities (primary care practices in underserved neighborhoods; COVID-19 mobile testing units located in underserved communities; mask giveaway events; and the local public school system) The SAB identified groups that the research team then partnered with to share information about the study (Village Heart BEAT, a community-based organization aimed at improving the health of African American and Hispanic populations; and HealthCare System employee affinity groups serving Hispanic/Latino and African American communities). Demographics include 90% White/Caucasian, 5% Black/African American; 3% Hispanic and 2% Asian or Pacific Islander; 38% are healthcare workers; 67% are female. Conclusions Use of a community stakeholder advisory board has enhanced understanding and participation in a COVID-19 Community Research Partnership. Engaging diverse community stakeholders early in the research process was essential for ensuring data collection efforts are patient-centered and tailored to reach diverse communities.


Subject(s)
COVID-19 , Humans , Female , Male , Stakeholder Participation , Ethnicity , Minority Groups , SARS-CoV-2
4.
BMC Public Health ; 23(1): 631, 2023 04 03.
Article in English | MEDLINE | ID: covidwho-2285602

ABSTRACT

BACKGROUND: Marshallese and Hispanic communities in the United States have been disproportionately affected by COVID-19. Identifying strategies to reach late vaccine adopters is critical for ongoing and future vaccination efforts. We utilized a community-engaged approach that leveraged an existing community-based participatory research collaborative of an academic healthcare organization and Marshallese and Hispanic faith-based organizations (FBO) to host vaccination events. METHODS: Bilingual Marshallese and Hispanic study staff conducted informal interviews with 55 participants during the 15-minute post-vaccination observation period and formal semi-structured interviews with Marshallese (n = 5) and Hispanic (n = 4) adults post-event to assess the implementation of community vaccine events at FBOs, with a focus on factors associated with the decision to attend and be vaccinated. Formal interview transcripts were analyzed using thematic template coding categorized with the socio-ecological model (SEM). Informal interview notes were coded via rapid content analysis and used for data triangulation. RESULTS: Participants discussed similar factors influencing attitudes and behaviors toward receiving the COVID-19 vaccine. Themes included: (1) intrapersonal - myths and misconceptions, (2) interpersonal - protecting family and family decision-making, (3) community - trust of community location of events and influence of FBO members and leaders, (4) institutional - trust in a healthcare organization and bilingual staff, and (5) policy. Participants noted the advantages of vaccination delivery at FBOs, contributing to their decision to attend and get vaccinated. CONCLUSIONS: The following strategies may improve vaccine-related attitudes and behaviors of Marshallese and Hispanic communities not only for the COVID-19 vaccine but also for other preventive vaccinations: 1) interpersonal-level - develop culturally-focused vaccine campaigns targeting the family units, 2) community-level - host vaccination events at convenient and/or trusted locations, such as FBOs, and engage community and/or FBO formal or lay leaders as vaccine ambassadors or champions, and 3) institutional-level - foster trust and a long-term relationship with the healthcare organization and provide bilingual staff at vaccination events. Future research would be beneficial to investigate the effects of replicating these strategies to support vaccine uptake among Marshallese and Hispanic communities.


Subject(s)
COVID-19 Vaccines , COVID-19 , Humans , Adult , United States , Community Participation , COVID-19/prevention & control , Stakeholder Participation , Hispanic or Latino , Vaccination
5.
Int J Environ Res Public Health ; 20(1)2022 12 30.
Article in English | MEDLINE | ID: covidwho-2241306

ABSTRACT

Throughout COVID-19, health officials have relied on data visualizations to communicate urgent messages about the spread of the virus and preventative measures. Relatively few efforts have employed participatory engagement with communities who have experienced a disproportionate burden of COVID-19 illness to shape these communications. Sociologist W.E.B. Du Bois viewed data visualization as an approach to changing the way people think about themselves. This paper describes a community-engaged approach to data literacy skill-building with bilingual Latina learners in an adult English program in Northern California, Bay Area. The curriculum combines data visualization activities with language instruction and preventive health themes. Early work on COVID-19 in 2020-21 emphasized improving health knowledge and message interpretation but later shifted to a critical data literacy perspective, focusing on myth-busting, improving risk messaging in their own social networks, and supporting learners to see the power of their own experiences in data story-telling processes. This pedagogical approach, guided by Charles Brigg's idea of communicative justice priorities, locates adult learners' data visualization work as part of a broader effort to be included in the perspectives that shape knowledge production in today's healthcare system. This approach can be used to examine disparities in information access in linguistically minoritized communities and guide future education interventions.


Subject(s)
COVID-19 , Pandemics , Adult , Humans , Community Participation , COVID-19/epidemiology , Stakeholder Participation , Language
6.
Contemp Clin Trials ; 126: 107090, 2023 03.
Article in English | MEDLINE | ID: covidwho-2244483

ABSTRACT

BACKGROUND: Link for Equity is a multi-tiered, school-based program of trauma-informed care and cultural humility designed to reduce the impact of Adverse Child Experiences among Black Indigenous and other children of color (BIPOC). This report describes the program, its trial design, and the study participants' baseline characteristics. METHODS: We designed a nested waitlist-controlled trial to evaluate Link for Equity's effectiveness in reducing school violence among BIPOC students. Three pairs of school districts, matched on suspension rates and enrollment of Black/African American, Hispanic/Latinx, and American Indian/Alaska Native children, were randomized into either an intervention or delayed intervention (waitlist control) group. A community-engaged approach guided the development of protocols. Within intervention sites, BIPOC students who screened positive for ACEs or posttraumatic stress were also randomized into an immediate and waitlist control group to receive additional one-on-one support from trained school staff. RESULTS: The trial was implemented from 2019 to 2021, which overlapped with the pandemic and civil unrest in Minnesota. At baseline, 444 staff and 188 students enrolled in the study. Over a quarter of American Indian/Alaska Native students, 18% of multiple race, 12% of Black/African American, 14% of Hispanic/Latinx students reported 4+ ACEs. Between 44 and 53% of all the BIPOC students in the study were symptomatic for PTSD. Of the enrolled students, 78.7% qualified for one-on-one Link support. CONCLUSION: We implemented a multilevel waitlist-controlled trial of Link for Equity using community-engaged methods. Despite school closures during the pandemic, the study persisted with its methods now being employed in an expanded cohort of middle schools. TRIAL REGISTRATION: ClinicalTrials.gov (NCT04026477, NCT04026490).


Subject(s)
Community Participation , Stakeholder Participation , Child , Humans , Students , Violence/prevention & control , Schools
7.
PLoS One ; 17(10): e0276257, 2022.
Article in English | MEDLINE | ID: covidwho-2089425

ABSTRACT

OBJECTIVE: To evaluate implementation of a community-engaged approach to scale up COVID-19 mass testing in low-income, majority-Latino communities. METHODS: In January 2021, we formed a community-academic "Latino COVID-19 Collaborative" with residents, leaders, and community-based organizations (CBOs) from majority-Latinx, low-income communities in three California counties (Marin/Merced/San Francisco). The collaborative met monthly to discuss barriers/facilitators for COVID-19 testing, and plan mass testing events informed by San Francisco's Unidos en Salud "test and respond" model, offering community-based COVID-19 testing and post-test support in two US-census tracts: Canal (Marin) and Planada (Merced). We evaluated implementation using the RE-AIM framework. To further assess testing barriers, we surveyed a random sample of residents who did not attend the events. RESULTS: Fifty-five residents and CBO staff participated in the Latino collaborative. Leading facilitators identified to increase testing were extended hours of community-based testing and financial support during isolation. In March-April 2021, 1,217 people attended mass-testing events over 13 days: COVID-19 positivity was 3% and 1% in Canal and Planada, respectively. The RE-AIM evaluation found: census tract testing coverage of 4.2% and 6.3%, respectively; 90% of event attendees were Latino, 89% had household income <$50,000/year, and 44% first-time testers (reach), effectiveness in diagnosing symptomatic cases early (median isolation time: 7 days) and asymptomatic COVID-19 (41% at diagnosis), high adoption by CBOs in both counties, implementation of rapid testing (median: 17.5 minutes) and disclosure, and post-event maintenance of community-based testing. Among 265 non-attendees surveyed, 114 (43%) reported they were aware of the event: reasons for non-attendance among the 114 were insufficient time (32%), inability to leave work (24%), and perceptions that testing was unnecessary post-vaccination (24%) or when asymptomatic (25%). CONCLUSION: Community-engaged mass "test and respond" events offer a reproducible approach to rapidly increase COVID-19 testing access in low-income, Latinx communities.


Subject(s)
COVID-19 , Humans , COVID-19/diagnosis , COVID-19/epidemiology , Community Participation , COVID-19 Testing , Reproducibility of Results , Stakeholder Participation , Hispanic or Latino , San Francisco/epidemiology
9.
Prog Community Health Partnersh ; 16(2S): 99-107, 2022.
Article in English | MEDLINE | ID: covidwho-1974218

ABSTRACT

BACKGROUND: Birmingham AIDS Outreach (BAO) is one of three study sites partnering with the University of Pittsburgh Graduate School of Public Health (Pitt Public Health) for a National Institutes of Health-funded randomized controlled trial on a financial management intervention for people with HIV who are experiencing homelessness or housing instability. After the onset of the coronavirus disease 2019 (COVID-19) pandemic in March 2020, the study team used a community-engaged approach to adapt research protocols at this site. We sought to describe a community-engaged approach to restarting National Institutes of Health-funded research during the COVID-19 pandemic. METHODS: Partners at Pitt Public Health and BAO developed a set of agency-wide COVID-19 policies and procedures for BAO organized around Rhodes' critical elements of community engagement. CONCLUSIONS: The challenges presented by COVID-19 in the research sector have provided an opportunity to reevaluate study activities and increase the extent to which research is conducted in a community-centered manner.


Subject(s)
COVID-19 , Pandemics , Community Participation , Community-Based Participatory Research , Humans , Stakeholder Participation
10.
Health Expect ; 25(4): 1619-1632, 2022 08.
Article in English | MEDLINE | ID: covidwho-1961577

ABSTRACT

INTRODUCTION: British Pakistani women have exceptionally high rates of obesity and yet are seldom heard in a research priority setting concerning weight management. The objectives of this study were (i) to ascertain what multisectoral professionals perceive to be the most pressing unmet obesity needs or topic areas that need more research in relation to Pakistani women living in deprived areas of Bradford and (ii) to determine the top 10 obesity health priorities for this group to develop an obesity research agenda. METHODS: A two-step process was adopted using the following: (i) a survey of a wide range of multisectoral professional stakeholders (n = 159) and (ii) a ranking exercise involving Pakistani women living in deprived areas of Bradford (n = 32) to select and prioritize their top 10 obesity health concerns and unmet needs from a list of 31 statements identified in the survey and previous research. Survey data were analysed using inductive content analysis and themes were identified. Themes were translated into statements to be ranked by Pakistani women. The ranking exercise was conducted by telephone either via voice or video call. Data were analysed using a reverse scoring system. RESULTS: Survey responses were grouped into statements reflecting the following three categories: education needs; healthy behaviour barriers and mental well-being. The highest rankings were given by Pakistani women to statements on mental health and the need for education. The top 10 prioritized statements were developed with members of the public into an obesity research agenda that reflected the target population. CONCLUSION: Actively engaging British Pakistani women in setting research priorities provided a unique opportunity to understand the key areas they think are important for future research. The culminating research agenda can be used by researchers to advance the field of obesity research in Pakistani communities, thus producing research outputs that are relevant to and have impact in this population. PATIENT OR PUBLIC CONTRIBUTION: Participants in the ranking exercise collected data. Public contributors were involved in developing the prioritized statements into a research agenda.


Subject(s)
Health Priorities , Health Services Needs and Demand , Health Services Research , Obesity , Poverty Areas , Social Determinants of Health , Biomedical Research/methods , Biomedical Research/organization & administration , Female , Health Care Surveys , Health Priorities/organization & administration , Health Services Research/methods , Health Services Research/organization & administration , Humans , Intersectoral Collaboration , Obesity/epidemiology , Obesity/therapy , Pakistan/ethnology , Social Determinants of Health/statistics & numerical data , Stakeholder Participation , United Kingdom/epidemiology
11.
PLoS One ; 17(3): e0264940, 2022.
Article in English | MEDLINE | ID: covidwho-1938421

ABSTRACT

BACKGROUND: The significant adverse social and economic impact of the COVID-19 pandemic has cast broader light on the importance of addressing social determinants of health (SDOH). Medicaid Managed Care Organizations (MMCOs) have increasingly taken on a leadership role in integrating medical and social services for Medicaid members. However, the experiences of MMCOs in addressing member social needs during the pandemic has not yet been examined. AIM: The purpose of this study was to describe MMCOs' experiences with addressing the social needs of Medicaid members during the COVID-19 pandemic. METHODS: The study was a qualitative study using data from 28 semi-structured interviews with representatives from 14 MMCOs, including state-specific markets of eight national and regional managed care organizations. Data were analyzed using thematic analysis. RESULTS: Four themes emerged: the impact of the pandemic, SDOH response efforts, an expanding definition of SDOH, and managed care beyond COVID-19. Specifically, participants discussed the impact of the pandemic on enrollees, communities, and healthcare delivery, and detailed their evolving efforts to address member nonmedical needs during the pandemic. They reported an increased demand for social services coupled with a significant retraction of community social service resources. To address these emerging social service gaps, participants described mounting a prompt and adaptable response that was facilitated by strong existing relationships with community partners. CONCLUSION: Among MMCOs, the COVID-19 pandemic has emphasized the importance of addressing member social needs, and the need for broader consideration of what constitutes SDOH from a healthcare delivery standpoint.


Subject(s)
COVID-19/psychology , Medicaid/trends , Social Determinants of Health/trends , Delivery of Health Care , Humans , Managed Care Programs/statistics & numerical data , Managed Care Programs/trends , Medicaid/economics , Medicaid/statistics & numerical data , Pandemics , Qualitative Research , SARS-CoV-2/pathogenicity , Social Behavior , Social Determinants of Health/statistics & numerical data , Social Work , Stakeholder Participation , Surveys and Questionnaires , United States
12.
Healthc Manage Forum ; 35(5): 310-317, 2022 Sep.
Article in English | MEDLINE | ID: covidwho-1927991

ABSTRACT

Enhancing the use of technology in long-term care has been identified as a key part of broader efforts to strengthen the sector in the wake of the COVID-19 pandemic. To inform such efforts, we convened a series of citizen panels, followed by a national stakeholder dialogue with system leaders focused on reimagining the long-term care sector using technology. Key actions prioritized through the deliberations convened included: developing an innovation roadmap/agenda (including national standards and guidelines); using co-design approaches for the strengthening the long-term care sector and for technological innovation; identifying and coordinating existing innovation projects to support scale and spread; enabling rapid-learning and improvement cycles to support the development, evaluation, and implementation of new technologies; and using funding models that enable the flexibility needed for such rapid-learning cycles.


Subject(s)
COVID-19 , Long-Term Care/methods , Stakeholder Participation , Technology/methods , Canada , Humans , Long-Term Care/trends , Pandemics , Technology/trends
13.
J Am Med Inform Assoc ; 29(9): 1480-1488, 2022 08 16.
Article in English | MEDLINE | ID: covidwho-1890962

ABSTRACT

OBJECTIVE: The Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) program is a consortium of community-engaged research projects with the goal of increasing access to Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) tests in underserved populations. To accelerate clinical research, common data elements (CDEs) were selected and refined to standardize data collection and enhance cross-consortium analysis. MATERIALS AND METHODS: The RADx-UP consortium began with more than 700 CDEs from the National Institutes of Health (NIH) CDE Repository, Disaster Research Response (DR2) guidelines, and the PHENotypes and eXposures (PhenX) Toolkit. Following a review of initial CDEs, we made selections and further refinements through an iterative process that included live forums, consultations, and surveys completed by the first 69 RADx-UP projects. RESULTS: Following a multistep CDE development process, we decreased the number of CDEs, modified the question types, and changed the CDE wording. Most research projects were willing to collect and share demographic NIH Tier 1 CDEs, with the top exception reason being a lack of CDE applicability to the project. The NIH RADx-UP Tier 1 CDE with the lowest frequency of collection and sharing was sexual orientation. DISCUSSION: We engaged a wide range of projects and solicited bidirectional input to create CDEs. These RADx-UP CDEs could serve as the foundation for a patient-centered informatics architecture allowing the integration of disease-specific databases to support hypothesis-driven clinical research in underserved populations. CONCLUSION: A community-engaged approach using bidirectional feedback can lead to the better development and implementation of CDEs in underserved populations during public health emergencies.


Subject(s)
Biomedical Research , COVID-19 , Acceleration , COVID-19 Testing , Common Data Elements , Community Participation , Data Collection , Female , Humans , Male , National Institute of Neurological Disorders and Stroke (U.S.) , SARS-CoV-2 , Stakeholder Participation , United States , Vulnerable Populations
14.
BMJ Glob Health ; 7(5)2022 05.
Article in English | MEDLINE | ID: covidwho-1854319

ABSTRACT

OBJECTIVE: To systematically identify and describe approaches to prioritise primary research topics in any health-related area. METHODS: We searched Medline and CINAHL databases and Google Scholar. Teams of two reviewers screened studies and extracted data in duplicate and independently. We synthesised the information across the included approaches by developing common categorisation of relevant concepts. RESULTS: Of 44 392 citations, 30 articles reporting on 25 approaches were included, addressing the following fields: health in general (n=9), clinical (n=10), health policy and systems (n=10), public health (n=6) and health service research (n=5) (10 addressed more than 1 field). The approaches proposed the following aspects to be addressed in the prioritisation process: situation analysis/ environmental scan, methods for generation of initial list of topics, use of prioritisation criteria, stakeholder engagement, ranking process/technique, dissemination and implementation, revision and appeal mechanism, and monitoring and evaluation. Twenty-two approaches proposed involving stakeholders in the priority setting process. The most commonly proposed stakeholder category was 'researchers/academia' (n=17, 77%) followed by 'healthcare providers' (n=16, 73%). Fifteen of the approaches proposed a list of criteria for determining research priorities. We developed a common framework of 28 prioritisation criteria clustered into nine domains. The criterion most frequently mentioned by the identified approaches was 'health burden' (n=12, 80%), followed by 'availability of resources' (n=11, 73%). CONCLUSION: We identified and described 25 prioritisation approaches for primary research topics in any health-related area. Findings highlight the need for greater participation of potential users (eg, policy-makers and the general public) and incorporation of equity as part of the prioritisation process. Findings can guide the work of researchers, policy-makers and funders seeking to conduct or fund primary health research. More importantly, the findings should be used to enhance a more coordinated approach to prioritising health research to inform decision making at all levels.


Subject(s)
Health Policy , Public Health , Delivery of Health Care , Health Services , Humans , Stakeholder Participation
15.
J Glob Health ; 12: 06001, 2022.
Article in English | MEDLINE | ID: covidwho-1811192

ABSTRACT

Background: Pneumonia is the leading cause of under-five child deaths globally and in Bangladesh. Hypoxaemia or low (<90%) oxygen concentration in the arterial blood is one of the strongest predictors of child mortality from pneumonia and other acute respiratory infections. Since 2014, the World Health Organization recommends using pulse oximetry devices in Integrated Management of Childhood Illness (IMCI) services (outpatient child health services), but it was not routinely used in most health facilities in Bangladesh until 2018. This paper describes the stakeholder engagement process embedded in an implementation research study to influence national policy and programmes to introduce pulse oximetry in routine IMCI services in Bangladesh. Methods: Based on literature review and expert consultations, we developed a conceptual framework, which guided the planning and implementation of a 4-step stakeholder engagement process. Desk review, key informant interviews, consultative workshops and onsite demonstration were the key methods to involve and engage a wide range of stakeholders. In the first step, a comprehensive desk review and key informant interviews were conducted to identify stakeholder organisations and scored them based on their power and interest levels regarding IMCI implementation in Bangladesh. In the second step, two national level, two district level and five sub-district level sensitisation workshops were organised to orient all stakeholder organisations having high power or high interest regarding the importance of using pulse oximetry for pneumonia assessment and classification. In the third step, national and district level high power-high interest stakeholder organisations were involved in developing a joint action plan for introducing pulse oximetry in routine IMCI services. In the fourth step, led by a formal working group under the leadership of the Ministry of Health, we updated the national IMCI implementation package, including all guidelines, training manuals, services registers and referral forms in English and Bangla. Subsequently, we demonstrated its use in real-life settings involving various levels of (national, district and sub-district) stakeholders and worked alongside the government leaders towards carefully resuming activities despite the COVID-19 pandemic. Results: Our engagement process contributed to the national decision to introduce pulse oximetry in routine child health services and update the national IMCI implementation package demonstrating country ownership, government leadership and multi-partner involvement, which are steppingstones towards scalability and sustainability. However, our experience clearly delineates that stakeholder engagement is a context-driven, time-consuming, resource-intensive, iterative, mercurial process that demands meticulous planning, prioritisation, inclusiveness, and adaptability. It is also influenced by the expertise, experience and positionality of the facilitating organization. Conclusions: Our experience has demonstrated the value and potential of the approach that we adopted for stakeholder engagement. However, the approach needs to be conceptualised coupled with the allocation of adequate resources and time commitment to implement it effectively.


Subject(s)
COVID-19 , Delivery of Health Care, Integrated , Bangladesh , Child , Humans , Oximetry , Pandemics , Policy , Stakeholder Participation
16.
J Gen Intern Med ; 37(Suppl 1): 64-72, 2022 04.
Article in English | MEDLINE | ID: covidwho-1763450

ABSTRACT

BACKGROUND: Little is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement. OBJECTIVE: To answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19? DESIGN: We conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants' experiences with the impact of COVID-19 on research engagement. PARTICIPANTS: Seven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript. APPROACH: We used a content analysis approach and identified the main themes using an inductive process. KEY RESULTS: Respondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity. CONCLUSIONS: COVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement. TRIAL REGISTRATION: Clinicaltrials.gov NCT02722382.


Subject(s)
COVID-19 , Delivery of Health Care , Family , Humans , Patient Outcome Assessment , Stakeholder Participation
17.
BMJ Open ; 12(3): e055289, 2022 03 21.
Article in English | MEDLINE | ID: covidwho-1752877

ABSTRACT

INTRODUCTION: Recovery colleges (RCs) are mental health centres aimed at equipping people with skills to live a meaningful life despite the presence of mental distress. Unique to them is the aspect of cocreation; RCs are designed collaboratively with people of lived experiences of mental health and addictions and care providers. Despite established benefits, there remains a lack of empirical evidence on how RCs work and on their impact. AIMS: We aim to address this gap by designing a cocreated evaluation framework for RCs. This will be accomplished by engaging RC student/facilitators to provide perspectives on RCs/RC evaluation and cocreate a scoping review identifying evaluation gaps in the literature. Themes identified through these processes will form the evaluation framework. METHODS AND ANALYSIS: Two methodologies will be used to explore RC evaluation: student/facilitator engagement and a scoping review of current published and grey literature on RC evaluation. Engagement will be achieved using a participatory action research approach consisting of informant interviews of ~25 RC students/facilitators across Canada, which will be thematically analysed. The scoping review will follow methodology described by Arksey and O'Malley modified to support cocreation. Concurrent conducting of the engagement process and scoping review will allow RC students and peer facilitators the opportunity to shape RC evaluations, address gaps in the literature and codesign an evaluation framework focused on recovery-oriented processes and outcomes mattering most to RCs students/facilitators. ETHICS AND DISSEMINATION: Ethics approval was received for the RC student/facilitator engagement component from the Centre for Addictions and Mental Health Research Ethics Board (#042-2020) and Ontario Shores Centre for Mental Health Sciences (#20-013-B). Scoping review results will be copresented through national and international medical education conferences and published in open-access peer-reviewed journals. Furthermore, a dissemination strategy on evaluation for the national RC community will be created.


Subject(s)
Mental Disorders , Stakeholder Participation , Humans , Mental Disorders/therapy , Mental Health , Ontario , Research Design , Review Literature as Topic
18.
JAMA Netw Open ; 5(2): e220214, 2022 02 01.
Article in English | MEDLINE | ID: covidwho-1709517

ABSTRACT

Importance: COVID-19 has highlighted widespread chronic underinvestment in digital health that hampered public health responses to the pandemic. Recognizing this, the Riyadh Declaration on Digital Health, formulated by an international interdisciplinary team of medical, academic, and industry experts at the Riyadh Global Digital Health Summit in August 2020, provided a set of digital health recommendations for the global health community to address the challenges of current and future pandemics. However, guidance is needed on how to implement these recommendations in practice. Objective: To develop guidance for stakeholders on how best to deploy digital health and data and support public health in an integrated manner to overcome the COVID-19 pandemic and future pandemics. Evidence Review: Themes were determined by first reviewing the literature and Riyadh Global Digital Health Summit conference proceedings, with experts independently contributing ideas. Then, 2 rounds of review were conducted until all experts agreed on the themes and main issues arising using a nominal group technique to reach consensus. Prioritization was based on how useful the consensus recommendation might be to a policy maker. Findings: A diverse stakeholder group of 13 leaders in the fields of public health, digital health, and health care were engaged to reach a consensus on how to implement digital health recommendations to address the challenges of current and future pandemics. Participants reached a consensus on high-priority issues identified within 5 themes: team, transparency and trust, technology, techquity (the strategic development and deployment of technology in health care and health to achieve health equity), and transformation. Each theme contains concrete points of consensus to guide the local, national, and international adoption of digital health to address challenges of current and future pandemics. Conclusions and Relevance: The consensus points described for these themes provide a roadmap for the implementation of digital health policy by all stakeholders, including governments. Implementation of these recommendations could have a significant impact by reducing fatalities and uniting countries on current and future battles against pandemics.


Subject(s)
COVID-19 , Global Health/standards , Health Plan Implementation/standards , Pandemics , Telemedicine/standards , Consensus , Digital Technology/standards , Forecasting , Humans , SARS-CoV-2 , Stakeholder Participation
19.
Pediatrics ; 149(3)2022 03 01.
Article in English | MEDLINE | ID: covidwho-1705029

ABSTRACT

OBJECTIVES: To establish statewide consensus priorities for safer in-person school for children with medical complexity (CMC) during the coronavirus disease 2019 (COVID-19) pandemic using a rapid, replicable, and transparent priority-setting method. METHODS: We adapted the Child Health and Nutrition Research Initiative Method, which allows for crowdsourcing ideas from diverse stakeholders and engages technical experts in prioritizing these ideas using predefined scoring criteria. Crowdsourcing surveys solicited ideas from CMC families, school staff, clinicians and administrators through statewide distribution groups/listservs using the prompt: "It is safe for children with complex health issues and those around them (families, teachers, classmates, etc.) to go to school in-person during the COVID-19 pandemic if/when…" Ideas were aggregated and synthesized into a unique list of candidate priorities. Thirty-four experts then scored each candidate priority against 5 criteria (equity, impact on COVID-19, practicality, sustainability, and cost) using a 5-point Likert scale. Scores were weighted and predefined thresholds applied to identify consensus priorities. RESULTS: From May to June 2021, 460 stakeholders contributed 1166 ideas resulting in 87 candidate priorities. After applying weighted expert scores, 10 consensus CMC-specific priorities exceeded predetermined thresholds. These priorities centered on integrating COVID-19 safety and respiratory action planning into individualized education plans, educating school communities about CMC's unique COVID-19 risks, using medical equipment safely, maintaining curricular flexibility, ensuring masking and vaccination, assigning seats during transportation, and availability of testing and medical staff at school. CONCLUSIONS: Priorities for CMC, identified by statewide stakeholders, complement and extend existing recommendations. These priorities can guide implementation efforts to support safer in-person education for CMC.


Subject(s)
COVID-19/prevention & control , Infection Control/methods , Multiple Chronic Conditions , Safety , Schools , Adolescent , Adult , Child , Child Health , Consensus , Crowdsourcing , Female , Health Policy , Humans , Male , Middle Aged , Stakeholder Participation , Wisconsin , Young Adult
20.
Hematology Am Soc Hematol Educ Program ; 2021(1): 196-205, 2021 12 10.
Article in English | MEDLINE | ID: covidwho-1666617

ABSTRACT

Patients with sickle cell disease (SCD) have significant impairment in their quality of life across the life span as a consequence of serious disease burden with several SCD-related complications. A number of disease-modifying therapies are currently available, yet long-term clinical benefits in real-world settings remain unclear. Over the past few years, a number of important initiatives have been launched to optimize clinical trials in SCD in different ways, including: (1) established panels through a partnership between the American Society of Hematology (ASH) and the US Food and Drug Administration; (2) the ASH Research Collaborative SCD Clinical Trials Network; (3) the PhenX Toolkit (consensus measures for Phenotypes and eXposures) in SCD; and (4) the Cure Sickle Cell Initiative, led by the National Heart, Lung, and Blood Institute. Electronic patient-reported outcomes assessment is highly recommended, and patient-reported outcomes (PROs) should be evaluated in all SCD trials and reported using Standard Protocol Items Recommendations for Interventional Trials guidelines. Patient-centered outcomes research (PCOR) approaches and meaningful stakeholder engagement throughout the process have the potential to optimize the execution and success of clinical trials in SCD with considerable financial value. This article reviews several clinical trial considerations in SCD related to study design and outcomes assessment as informed by recent initiatives as well as patient-centered research approaches and stakeholder engagement. A proposed hematology stakeholder-engagement framework for clinical trials is also discussed.


Subject(s)
Anemia, Sickle Cell/therapy , Clinical Trials as Topic , Humans , Patient Reported Outcome Measures , Quality of Life , Stakeholder Participation , United States
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