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BACKGROUND: Diabetes is a serious public health problem affecting 37.3 million Americans. Diabetes shared medical appointments (SMAs) are an effective strategy for providing diabetes self-management support and education in primary care. However, practices delivering SMAs experience implementation challenges. This analysis examined conditions associated with successful practice implementation of diabetes SMAs in the context of participation in a pragmatic trial. METHODS: Mixed methods study using qualitative and quantitative data collected from interviews, observations, surveys, and practice-reported data, guided by the practical, robust implementation and sustainability model (PRISM). Data were analyzed using qualitative comparative analysis (QCA). Successful implementation was defined as meeting patient recruitment targets (Reach) during the study period. Participants were clinicians and staff members from 22 primary care practices in Colorado and Missouri, USA. RESULTS: The first necessary condition identified from the QCA was the presence of additional resources for patients with diabetes in the practice. Within practices that had these additional resources, we found that a sufficiency condition was the presence of an effective key person to make things happen with the SMAs. A second QCA was conducted to determine conditions underlying the presence of the effective key person (often performing functions of an implementation champion), which revealed factors including low or managed employee turnover, a strong baseline practice culture, and previous experience delivering SMAs. CONCLUSIONS: Identification of key factors necessary and sufficient for implementation of new care processes is important to enhance patient access to evidence-based interventions. This study suggests that practice features and resources have important implications for implementation of diabetes SMAs. There may be opportunities to support practices with SMA implementation by enabling the presence of skilled implementation champions. TRIAL REGISTRATION: Registered at clinicaltrials.gov under trial ID NCT03590041, registered on July 18, 2018.
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BACKGROUND: Diabetes self-management education and support can be effectively and efficiently delivered in primary care in the form of shared medical appointments (SMAs). Comparative effectiveness of SMA delivery features such as topic choice, multi-disciplinary care teams, and peer mentor involvement is not known. OBJECTIVE: To compare effects of standardized and patient-driven models of diabetes SMAs on patient-level diabetes outcomes. DESIGN: Pragmatic cluster randomized trial. PARTICIPANTS: A total of 1060 adults with type 2 diabetes in 22 primary care practices. INTERVENTIONS: Practice personnel delivered the 6-session Targeted Training in Illness Management (TTIM) curriculum using either standardized (set content delivered by a health educator) or patient-driven SMAs (patient-selected topic order delivered by health educators, behavioral health providers [BHPs], and peer mentors). MAIN MEASURES: Outcomes included self-reported diabetes distress and diabetes self-care behaviors from baseline and follow-up surveys (assessed at 1st and final SMA session), and HbA1c, BMI, and blood pressure from electronic health records. Analyses used descriptive statistics, linear regression, and linear mixed models. KEY RESULTS: Both standardized and patient-driven SMAs effectively improved diabetes distress, self-care behaviors, BMI (- 0.29 on average), and HbA1c (- 0.45% (mmol/mol) on average, 8.3 to 7.8%). Controlling for covariates, there was a small, significant effect of condition on overall diabetes distress in favor of standardized SMAs (F(1,841) = 4.3, p = .04), attributable to significant effects of condition on emotion and regimen distress subscales. There was a small, significant effect of condition on diastolic blood pressure in favor of standardized SMAs (F(1,5199) = 4.50, p = .03). There were no other differences between conditions. CONCLUSIONS: Both SMA models using the TTIM curriculum yielded significant improvement in diabetes distress, self-care, and HbA1c. Patient-driven diabetes SMAs involving BHPs and peer mentors and topic selection did not lead to better clinical or patient-reported outcomes than standardized diabetes SMAs facilitated by a health educator following a set topic order. NIH TRIAL REGISTRY NUMBER: NCT03590041.
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PURPOSE: To understand motivators, concerns, and factors associated with COVID-19 vaccine initiation for adults in five racial/ethnic communities across Colorado. METHODS: Community-based data collectors surveyed participants from five Colorado communities (urban and rural Latina/o/x, urban Black, rural African American immigrant, and urban American Indian) about vaccine attitudes, intentions, and uptake from September to December 2021. Bivariate and multivariable logistic regression models were used to examine factors associated with the primary outcome of COVID-19 vaccine "initiation." RESULTS: Most participants (71.1%) reported having initiated COVID-19 vaccination; vaccine series completion was 65.1%. Both motivators and concerns about COVID-19 vaccines were prevalent. Vaccine hesitancy (OR: 0.41, 95% CI:0.32-0.53; p < .001) and low perceptions of COVID-19 vaccination social norms (OR: 0.48, 95% CI:0.27-0.84; p = .01) were associated with vaccine initiation. CONCLUSION: Despite the limitation of a moderate sample size, our findings support the need for further interventions to increase vaccination against COVID-19 by reducing vaccine hesitancy and improving perceived social norms of vaccination in underserved Colorado communities. IMPLICATIONS: To improve trust in vaccines and promote vaccine uptake, community messaging should be tailored to vaccination motivators and concerns and demonstrate COVID-19 vaccination as the community default.
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Vacinas contra COVID-19 , COVID-19 , Humanos , Colorado , Vacinas contra COVID-19/administração & dosagem , Feminino , Masculino , COVID-19/prevenção & controle , Adulto , Pessoa de Meia-Idade , Vacinação/estatística & dados numéricos , Vacinação/psicologia , SARS-CoV-2 , Idoso , Hesitação Vacinal/estatística & dados numéricos , Hesitação Vacinal/psicologia , Adulto Jovem , AdolescenteRESUMO
Background: The use of Designing for Dissemination and Sustainability (D4DS) principles and methods can support the development of research products (interventions, tools, findings) to match well with the needs and context of the intended audience and setting. D4DS principles and methods are not well-known or used during clinical and public health research; research teams would benefit from applying D4DS. This paper presents the development of a new digital platform for teams to learn and apply a D4DS process to their work. Methods: A user-centered design (UCD) approach engaged users (n=14) and an expert panel (n=6) in an iterative design process from discovery to prototyping and testing. We led five design sessions using Zoom and Figma software over a 5-month period. Users (71% academics; 29% practitioners) participated in at least 2 sessions. Following design sessions, feedback from users were summarized and discussed to generate design decisions. A prototype was then built and heuristically tested with 11 users who were asked to complete multiple tasks within the platform while verbalizing their decision-making using the 'think aloud' procedure. The System Usability Scale (SUS) was administered at the end of each testing session. After refinements to the platform were made, usability was reassessed with 7 of 11 same users to examine changes. Results: The interactive digital platform (the D4DS Planner) has two main components: 1) the Education Hub (e.g., searchable platform with literature, videos, websites) and 2) the Action Planner. The Action Planner includes 7 interactive steps that walk users through a set of activities to generate a downloadable D4DS action plan for their project. Participants reported that the prototype tool was moderately usable (SUS=66) but improved following refinements (SUS=71). Conclusions: This is a first of its kind tool that supports research teams in learning about and explicitly applying D4DS to their work. The use of this publicly available tool may increase the adoption, impact, and sustainment of a wide range of research products. The use of UCD yielded a tool that is easy to use. The future use and impact of this tool will be evaluated, and the tool will continue to be refined and improved.
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Effective therapies for reducing post-acute sequelae of COVID-19 (PASC) symptoms are lacking. Evaluate the association between monoclonal antibody (mAb) treatment or COVID-19 vaccination with symptom recovery in COVID-19 participants. The longitudinal survey-based cohort study was conducted from April 2021 to January 2022 across a multihospital Colorado health system. Adults ≥18 years with a positive SARS-CoV-2 test were included. Primary exposures were mAb treatment and COVID-19 vaccination. The primary outcome was time to symptom resolution after SARS-CoV-2 positive test date. The secondary outcome was hospitalization within 28 days of a positive SARS-CoV-2 test. Analysis included 1612 participants, 539 mAb treated, and 486 with ≥2 vaccinations. Time to symptom resolution was similar between mAb treated versus untreated patients (adjusted hazard ratio (aHR): 0.90, 95% CI: 0.77-1.04). Time to symptom resolution was shorter for patients who received ≥2 vaccinations compared to those unvaccinated (aHR: 1.56, 95% CI: 1.31-1.88). 28-day hospitalization risk was lower for patients receiving mAb therapy (adjusted odds ratio [aOR]: 0.31, 95% CI: 0.19-0.50) and ≥2 vaccinations (aOR: 0.33, 95% CI: 0.20-0.55), compared with untreated or unvaccinated status. Analysis included 1612 participants, 539 mAb treated, and 486 with ≥2 vaccinations. Time to symptom resolution was similar between mAb treated versus untreated patients (adjusted hazard ratio (aHR): 0.90, 95% CI: 0.77-1.04). Time to symptom resolution was shorter for patients who received ≥2 vaccinations compared to those unvaccinated (aHR: 1.56, 95% CI: 1.31-1.88). 28-day hospitalization risk was lower for patients receiving mAb therapy (adjusted odds ratio [aOR]: 0.31, 95% CI: 0.19-0.50) and ≥2 vaccinations (aOR: 0.33, 95% CI: 0.20-0.55), compared with untreated or unvaccinated status. COVID-19 vaccination, but not mAb therapy, was associated with a shorter time to symptom resolution. Both were associated with lower 28-day hospitalization.
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COVID-19 , Adulto , Humanos , COVID-19/diagnóstico , COVID-19/prevenção & controle , Vacinas contra COVID-19 , Estudos de Coortes , SARS-CoV-2 , Anticorpos Monoclonais/uso terapêutico , VacinaçãoRESUMO
Providing communities with COVID-19 vaccination information is essential for optimizing equitable vaccine uptake. Using rapid community translation, adapted from Boot Camp Translation, five community teams transcreated COVID-19 vaccination campaigns. Transcreated messaging incorporated community attitudes, culture, and experiences. Using rapid community translation for the promotion of COVID-19 vaccination demonstrates a successful approach to engaging communities most affected by the pandemic to develop messages that reflect community values, assets, and needs, especially when time is of the essence. (Am J Public Health. 2024;114(S1):S50-S54. https://doi.org/10.2105/AJPH.2023.307456).
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COVID-19 , Humanos , COVID-19/prevenção & controle , Vacinas contra COVID-19 , Colorado , Vacinação , Programas de ImunizaçãoRESUMO
Shared medical appointments (SMAs) are an evidence-based approach to diabetes care in primary care settings, yet practices can struggle to ensure participation, especially among racial and ethnic minority and low-income patients. We conducted a multimethod evaluation of reach and attendance in the Invested in Diabetes study of the comparative effectiveness of two SMA delivery models (standardized and patient-driven) in two practice settings (federally qualified health centers [FQHCs] and clinics serving more commercially insured patients). Through this study, 22 practices reached 6.2% of patients with diabetes through SMAs over 3 years, with good attendance for both practice types and both SMA delivery models. FQHCs were especially successful at enrolling underserved populations and improved attendance with virtual SMAs.
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Opioid use disorder (OUD) represents a public health crisis in the United States. Medication for opioid use disorder (MOUD) with buprenorphine in primary care is a proven OUD treatment strategy. MOUD induction is when patients begin withdrawal and receive the first doses of buprenorphine. Differences between induction methods might influence short-term stabilization, long-term maintenance, and quality of life. This paper describes the protocol for a study designed to: (1) compare short-term stabilization and long-term maintenance treatment engagement in MOUD in patients receiving office, home, or telehealth induction and (2) identify clinically-relevant practice and patient characteristics associated with successful long-term treatment. The study design is a randomized, parallel group, pragmatic comparative effectiveness trial of three care models of MOUD induction in 100 primary care practices in the United States. Eligible patients are at least 16 years old, have been identified by their clinician as having opioid dependence and would benefit from MOUD. Patients will be randomized to one of three induction comparators: office, home, or telehealth induction. Primary outcomes are buprenorphine medication-taking and illicit opioid use at 30, 90, and 270 days post-induction. Secondary outcomes include quality of life and potential mediators of treatment maintenance (intentions, planning, automaticity). Potential moderators include social determinants of health, substance use history and appeal, and executive function. An intent to treat analysis will assess effects of the interventions on long-term treatment, using general/generalized linear mixed models, adjusted for covariates, for the outcomes analysis. Analysis includes practice- and patient-level random effects for hierarchical/longitudinal data. No large-scale, randomized comparative effectiveness research has compared home induction to office or telehealth MOUD induction on long-term outcomes for patients with OUD seen in primary care settings. The results of this study will offer primary care providers evidence and guidance in selecting the most beneficial induction method(s) for specific patients.
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Buprenorfina , Transtornos Relacionados ao Uso de Opioides , Humanos , Adolescente , Qualidade de Vida , Projetos de Pesquisa , Buprenorfina/uso terapêutico , Transtornos Relacionados ao Uso de Opioides/tratamento farmacológico , Atenção Primária à Saúde , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
BACKGROUND: Few large studies have investigated quality of life (QOL) for adults diagnosed with lower grade glioma (LGG). METHODS: QOL was assessed for 320 adults with LGG (World Health Organization grade 2/3) enrolled in the International Low Grade Glioma Registry by using the Medical Outcomes Study 36-Item Short Form health survey. Data on symptoms were also collected. QOL outcomes were examined by treatment group and also compared to those from a population-based case-control study of meningioma (the Meningioma Consortium), in which 1722 meningioma cases diagnosed among residents of Connecticut, Massachusetts, California, Texas, and North Carolina from May 1, 2006 through March 14, 2013 were enrolled and frequency matched to 1622 controls by age, sex, and geography. RESULTS: The LGG sample average age is 45 years at the time of interview and 53.1% male. Almost 55% of patients had received radiation and chemotherapy (primarily temozolomide); 32.4% had received neither treatment. Two-thirds of participants with LGG report difficulty with speaking, memory, or thinking, and over one of three reports personality change or difficulty driving. After controlling for age and other comorbidities, individuals with LGG report levels of physical, emotional, and mental health functioning below those reported in a meningioma as well as a general healthy population. CONCLUSIONS: Despite being relatively young, persons with LGG report significantly reduced QOL compared to persons with nonmalignant brain tumors and to a control population, which highlights the need to better acknowledge and manage these symptoms for this group of patients diagnosed in the prime of life.
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Neoplasias Encefálicas , Glioma , Neoplasias Meníngeas , Meningioma , Adulto , Humanos , Masculino , Pessoa de Meia-Idade , Feminino , Qualidade de Vida , Meningioma/cirurgia , Estudos de Casos e Controles , Glioma/cirurgia , Glioma/patologia , Neoplasias Encefálicas/patologia , Neoplasias Meníngeas/cirurgiaRESUMO
Although swallowed topical steroids are effective in inducing histological remission in eosinophilic esophagitis (EoE), their efficacy is limited by treatment nonadherence. In this study, we objectively measured adherence rates to swallowed topical steroids in adolescents with EoE over the course of 8 weeks and analyzed the association between adherence rate, disease and demographic features, symptom severity, and medication-taking habit strength. We found that approximately 20% of adolescents with EoE were over-dosing on their medications. After excluding these patients, mean adherence rate was 67.0% (±19.4%) and median adherence rate was 63% (interquartile range 53%-88%). Adherence was not associated with demographic features, disease history, symptom severity, or quality of life but was associated with habit strength (Pearson r = 0.48, P = 0.04). These findings suggest that habit strength may serve as a potential target for interventions aimed at improving adherence in adolescents with EoE.
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Esofagite Eosinofílica , Humanos , Adolescente , Esofagite Eosinofílica/diagnóstico , Fluticasona/uso terapêutico , Qualidade de Vida , Esteroides/uso terapêutico , Administração OralRESUMO
BACKGROUND: Despite the abundance of health information on the internet for people who identify as transgender and gender diverse (TGD), much of the content used is found on social media channels, requiring individuals to vet the information for relevance and quality. OBJECTIVE: We developed a prototype transgender health information resource (TGHIR) delivered via a mobile app to provide credible health and wellness information for people who are TGD. METHODS: We partnered with the TGD community and used a participatory design approach that included focus groups and co-design sessions to identify users' needs and priorities. We used the Agile software development methodology to build the prototype. A medical librarian and physicians with expertise in transgender health curated a set of 97 information resources that constituted the foundational content of the prototype. To evaluate the prototype TGHIR app, we assessed the app with test users, using a single item from the System Usability Scale to assess feature usability, cognitive walk-throughs, and the user version of the Mobile Application Rating Scale to evaluate the app's objective and subjective quality. RESULTS: A total of 13 people who identified as TGD or TGD allies rated their satisfaction with 9 of 10 (90%) app features as good to excellent, and 1 (10%) of the features-the ability to filter to narrow TGHIR resources-was rated as okay. The overall quality score on the user version of the Mobile Application Rating Scale was 4.25 out of 5 after 4 weeks of use, indicating a good-quality mobile app. The information subscore received the highest rating, at 4.75 out of 5. CONCLUSIONS: Community partnership and participatory design were effective in the development of the TGHIR app, resulting in an information resource app with satisfactory features and overall high-quality ratings. Test users felt that the TGHIR app would be helpful for people who are TGD and their care partners.
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BACKGROUND: Novel record linkage (RL) methods have the potential to enhance clinical informatics by integrating patient data from multiple sources-including electronic health records, insurance claims, and digital health devices-to inform patient-centered care. Engaging patients and other stakeholders in the use of RL methods in patient-centered outcomes research (PCOR) is a key step in ensuring RL methods are viewed as acceptable, appropriate, and useful. The University of Colorado Record Linkage (CURL) platform empowers the use of RL in PCOR. OBJECTIVES: This study aimed to describe the process of engaging patients and other stakeholders in the design of an RL dissemination package to support the use of RL methods in PCOR. METHODS: Customer discovery, value proposition design, and user experience methods were used to iteratively develop an RL dissemination package that includes animated explainer videos for patients and an RL research planning workbook for researchers. Patients and other stakeholders (researchers, data managers, and regulatory officials) were engaged in the RL dissemination package design. RESULTS: Patient partners emphasized the importance of conveying how RL methods may benefit patients and the rules researchers must follow to protect the privacy and security of patient data. Other stakeholders described accuracy, flexibility, efficiency, and data security compared with other available RL solutions. Dissemination package communication products reflect the value propositions identified by key stakeholders. As prioritized by patients, the animated explainer videos emphasize the data privacy and security processes and procedures employed when performing research using RL. The RL workbook addresses researchers' and data managers' needs to iteratively design RL projects and provides accompanying resources to alleviate leadership and regulatory officials' concerns about data regulation compliance. CONCLUSION: Dissemination products to promote adoption and use of CURL include materials to facilitate patient engagement in RL research and investigator step-by-step decision-making materials about the integration of RL methods in PCOR.
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Comunicação , Pacientes , Humanos , Projetos de Pesquisa , Participação do Paciente , Avaliação de Resultados da Assistência ao PacienteRESUMO
BACKGROUND: Access to credible and relevant health care information is an unmet need for the transgender and gender-diverse (TGD) community. This paper describes the community engagement methods and resulting community priorities as part of a codesign process for the development of a Transgender Health Information Resource (TGHIR) application. METHODS: A lesbian, gay, bisexual, transgender, and queer advocacy organization and an academic health sciences team partnered to establish a community advisory board (CAB) of TGD individuals, parents of TGD individuals, and clinicians with expertise in transgender health to inform the project. The analytic-deliberative model and group facilitation strategies based on Liberating Structures guided procedures. Affinity grouping was used to synthesize insights from CAB meeting notes regarding roles and perspectives on the design of the TGHIR application. We used the Patient Engagement in Research Scale (PEIRS) to evaluate CAB members' experience with the project. RESULTS: The CAB emphasized the importance of designing the application with and for the TGD community, including prioritizing intersectionality and diversity. CAB engagement processes benefited from setting clear expectations, staying focused on goals, synchronous and asynchronous work, and appreciating CAB member expertise. TGHIR application scope and priorities included a single source to access relevant, credible health information, the ability to use the app discreetly, and preserving privacy (i.e., safe use). An out-of-scope CAB need was the ability to identify both culturally and clinically competent TGD health care providers. PEIRS results showed CAB members experienced moderate to high levels of meaningful engagement (M[standard deviation] = 84.7[12] out of 100). CONCLUSION: A CAB model was useful for informing TGHIR application priority features. In-person and virtual methods were useful for engagement. The CAB continues to be engaged in application development, dissemination, and evaluation. The TGHIR application may complement, but will not replace, the need for both culturally and clinically competent health care for TGD people.
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Minorias Sexuais e de Gênero , Pessoas Transgênero , Feminino , Humanos , Identidade de Gênero , Comportamento Sexual , Participação do PacienteRESUMO
BACKGROUND: In March 2020, academic research centres in Colorado were closed to prevent the spread of COVID-19. Scientists and research staff were required to continue their work remotely with little time to prepare for the transition. METHODS: This survey study used an explanatory sequential mixed-method design to explore clinical and translational researcher and staff experiences of the transition to remote work during the first 6 weeks of the COVID-19 pandemic. Participants indicated the level of interference with their research and shared their experiences of remote work, how they were impacted, how they were adapting and coping, and any short-term or long-term concerns. RESULTS: Most participants indicated that remote work interfered with their research to a moderate or great degree. Participant stories illuminated the differences of remote work prior to and during COVID-19. They described both challenges and silver linings. Three themes that highlight the challenges of transitioning to remote work during a pandemic were: (1) Leadership communication: 'Leadership needs to revisit their communication strategy'; (2) Parenting demands: Parents are 'multitasked to death' every day and (3) Mental health challenges: The COVID-19 experience is 'psychologically taxing'. CONCLUSIONS: The study findings can be used to guide leaders in building community, resiliency and support productivity during current and future crises. Potential approaches to address these issues are proposed.
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COVID-19 , Saúde Mental , Humanos , Poder Familiar , Liderança , Pandemias/prevenção & controle , COVID-19/epidemiologia , ComunicaçãoRESUMO
Introduction: Racial and ethnic minority groups have higher rates of SARS-CoV-2 infection, severe illness, and death; however, they receive monoclonal antibody (mAb) treatment at lower rates than non-Hispanic White patients. We report data from a systematic approach to improve equitable provision of COVID-19 neutralizing monoclonal antibody treatment. Methods: Treatment was administered at a community health urgent care clinic affiliated with a safety-net urban hospital. The approach included a stable treatment supply, a same-day test and treat model, a referral process, patient outreach, and financial support. We analyzed the race/ethnicity data descriptively and compared proportions using a chi-square test. Results: Over 17 months, 2524 patients received treatment. Compared to the demographics of county COVID-19-positive cases, a greater proportion of patients who received mAb treatment were Hispanic (44.7% treatment vs. 36.5% positive cases, p < 0.001), a lower proportion were White Non-Hispanic (40.7% treatment vs. 46.3% positive cases, p < 0.001), equal proportion were Black (8.2% treatment vs. 7.4% positive cases, P = 0.13), and equal proportion occurred for other race patients. Discussion: Implementation of multiple systematic strategies to administer COVID-19 monoclonal antibodies resulted in an equitable race/ethnic distribution of treatment.
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BACKGROUND: Self-management is essential for good outcomes in type 2 diabetes and patients often benefit from self-management education. Shared medical appointments (SMAs) can increase self-efficacy for self management but are difficult for some primary care practices to implement. Understanding how practices adapt processes and delivery of SMAs for patients with type 2 diabetes may provide helpful strategies for other practices interested in implementing SMAs. METHODS: The Invested in Diabetes study was a pragmatic cluster-randomized, comparative effectiveness trial designed to compare two different models of diabetes SMAs delivered in primary care. We used a multi-method approach guided by the FRAME to assess practices' experience with implementation, including any planned and unplanned adaptations. Data sources included interviews, practice observations and field notes from practice facilitator check-ins. RESULTS: Several findings were identified from the data: 1) Modifications and adaptations are common in implementation of SMAs, 2) while most adaptations were fidelity-consistent supporting the core components of the intervention conditions as designed, some were not, 3) Adaptations were perceived to be necessary to help SMAs meet patient and practice needs and overcome implementation challenges, and 4) Content changes in the sessions were often planned and enacted to better address the contextual circumstances such as patient needs and culture. DISCUSSION: Implementing SMAs in primary care can be challenging and adaptations of both implementation processes and content and delivery of SMAS for patients with type 2 diabetes were common in the Invested in Diabetes study. Recognizing the need for adaptations based on practice context prior to implementation may help improve fit and success with SMAs, but care needs to be given to ensure that adaptations do not weaken the impact of the intervention. Practices may be able to assess what might need to adapted for them to be successful prior to implementation but likely will continue to adapt after implementation. CONCLUSION: Adaptations were common in the Invested in Diabetes study. Practices may benefit from understanding common challenges in implementing SMAs and adapting processes and delivery based on their own context. TRIAL REGISTRATION: This trial is registered on clinicaltrials.gov under Trial number NCT03590041, posted 18/07/2018.
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Diabetes Mellitus Tipo 2 , Autogestão , Consultas Médicas Compartilhadas , Humanos , Diabetes Mellitus Tipo 2/terapia , Aceitação pelo Paciente de Cuidados de Saúde , Atenção Primária à Saúde/métodosRESUMO
BACKGROUND: Engaging diverse populations in cancer genomics research is of critical importance and is a fundamental goal of the NCI Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. Established as part of the Cancer Moonshot, PE-CGS is a consortium of stakeholders including clinicians, scientists, genetic counselors, and representatives of potential study participants and their communities. Participant engagement is an ongoing, bidirectional, and mutually beneficial interaction between study participants and researchers. PE-CGS sought to set priorities in participant engagement for conducting the network's research. METHODS: PE-CGS deliberatively engaged its stakeholders in the following four-phase process to set the network's research priorities in participant engagement: (i) a brainstorming exercise to elicit potential priorities; (ii) a 2-day virtual meeting to discuss priorities; (iii) recommendations from the PE-CGS External Advisory Panel to refine priorities; and (iv) a virtual meeting to set priorities. RESULTS: Nearly 150 PE-CGS stakeholders engaged in the process. Five priorities were set: (i) tailor education and communication materials for participants throughout the research process; (ii) identify measures of participant engagement; (iii) identify optimal participant engagement strategies; (iv) understand cancer disparities in the context of cancer genomics research; and (v) personalize the return of genomics findings to participants. CONCLUSIONS: PE-CGS is pursuing these priorities to meaningfully engage diverse and underrepresented patients with cancer and posttreatment cancer survivors as participants in cancer genomics research and, subsequently, generate new discoveries. IMPACT: Data from PE-CGS will be shared with the broader scientific community in a manner consistent with participant informed consent and community agreement.