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To describe PCORnet, a clinical research network developed for patient-centered outcomes research on a national scale. Descriptive study of the current state and future directions for PCORnet. We conducted cross-sectional analyses of the health systems and patient populations of the 9 Clinical Research Networks and 2 Health Plan Research Networks that are part of PCORnet. Within the Clinical Research Networks, electronic health data are currently collected from 337 hospitals, 169,695 physicians, 3,564 primary care practices, 338 emergency departments, and 1,024 community clinics. Patients can be recruited for prospective studies from any of these clinical sites. The Clinical Research Networks have accumulated data from 80 million patients with at least one visit from 2009 to 2018. The PCORnet Health Plan Research Network population of individuals with a valid enrollment segment from 2009 to 2019 exceeds 60 million individuals, who on average have 2.63 years of follow-up. PCORnet’s infrastructure comprises clinical data from a diverse cohort of patients and has the capacity to rapidly access these patient populations for pragmatic clinical trials, epidemiological research, and patient-centered research on rare diseases. •PCORnet is a national network-of-networks developed to conduct patient-centered outcomes research.•There are nine Clinical Research Networks and two Health Plan Research Networks within PCORnet.•The Clinical Research Networks have collected EHR data for a cohort of 80 million individuals, and the Health Plan Network have collected enrollment and claims files on over 60 million individuals.•PCORnet infrastructure can support large-scale pragmatic clinical trials and observational research using its distributed data network.

OBJECTIVES:To ensure meaningful engagement of stakeholders (patients, clinicians, and communities) in developing the Mid-South Clinical Data Research Network (MS-CDRN), we implemented a comprehensive, multilevel approach(1) identify barriers to involving stakeholders in governance, network design, and implementation; (2) engage stakeholders in priority setting and research topic generation; (3) develop strategies to fully integrate stakeholders in CDRN governance and oversight; and (4) solicit guidance on patient-centered tools and strategies for recruiting research participants. METHODS:We engaged stakeholders(1) as integral research team members; (2) on oversight and advisory committees; (3) as consultants (using Community Engagement Studios); and (4) through interviews and surveys. We recruited stakeholders from community health centers, churches, barbershops, health fairs, a volunteer registry, and a patient portal. We prioritized recruitment from populations often underrepresented in research. RESULTS:During the first 18 months, we engaged 5670 stakeholders in developing the MS-CDRN. These were research team members and on governance committees (N=10), consultants (N=58), survey respondents (N=5543), and interviewees (N=59). Stakeholders identified important barriers and facilitators to engagement, developed stakeholder-informed policies, provided feedback on priority topics and research questions, and developed an intake process for data requests and interventional studies that included reviewing for appropriate patient-centeredness, patient engagement, and dissemination. DISCUSSION:Multilevel stakeholder engagement is a novel systematic approach to developing a meaningful patient-centered and patient-engaged research program. This approach allows ongoing input from highly engaged stakeholders while leveraging focused input from larger, more diverse groups to enhance the patient-centeredness of research and increase relevance to broader audiences.

Background Formal compilations of implementation strategies like the Expert Recommendations for Implementing Change (ERIC; 1) are relevant for planning and evaluating implementation initiatives. The relationship between these strategies and the particulars of a specific initiative is not always clear, particularly when implementation occurs outside of organized healthcare settings. The present study reports on the process used to develop an adapted glossary of ERIC strategies for implementing evidence-based health promotion programs in African American churches. Methods A glossary adaptation team composed of academics and community representatives met twice a month for six months to adapt implementation strategy definitions to fit the context of the present project. Collaborative discussions were held until consensus was reached for each strategy. This project-adapted glossary was then subjected to coding to document the types of changes that occurred during the adaptation process. Results The glossary adaptation team collectively dedicated 99.5 person-hours to the meetings to obtain consensus for the strategies. The final strategy glossary retained 64 strategies relevant to the project, with 84.4% of strategies involving some level of adaptation. Most of the adaptation involved specifying project-specific actors, specifying that the innovation involved evidence-based health promotion programs, and noting the role the project’s technical assistance team serves in supporting congregations during implementation. Conclusions Adapting implementation strategy definitions to a specific project is a time-intensive process that challenges a team to carefully and creatively consider how strategies may be enacted in a specific context (e.g., faith-based communities). The consensus-based process also served as a type of cultural exchange between the project’s academic partners, community partners, and consultants. The development of a project-specific glossary leverages the ability of project team members to employ implementation strategies as part of project planning and evaluation.

Dissemination of results to research participants is largely missing from the practices of most researchers. Few resources exist that describe best practices for disseminating information to this important stakeholder group. Four focus groups were conducted with a diverse group of individuals. All participants were part of a Patient-Centered Outcomes Research Institute-funded survey study. Focus groups aimed to identify participants' preferences about receiving research results and their reactions to three different dissemination platforms. Four focus groups with 37 participants were conducted, including: (1) adults with one comorbidity, at least a college education, and high socioeconomic status (SES); (2) adults with one comorbidity, less than a college education, and lower SES; (3) adults with low health literacy and/or numeracy; and (4) Black or African American adults. Participants discussed their preferences for research results delivery and how each of the platforms met those preferences. This included information needs as they relate to content and scope, including a desire to receive both individual and aggregate results, and study summaries. Email, paper, and website were all popular avenues of presentation. Some desired a written summary, and others preferred videos or visual graphics. Importantly, participants emphasized the desire for having a choice in the timing, frequency, and types of results. Research participants prefer to receive research results, including study impact and key findings, disseminated to them in an engaging format that allows choice of when and how the information is presented. The results encourage new standards whereby research participants are considered a critical stakeholder group.

Objective To enhance shared decision‐making (SDM) about metabolic and bariatric surgery (MBS) through the systematic implementation and evaluation of SDM tools across two large healthcare systems. Methods The project involved developing and integrating SDM tools into clinical workflows at two health systems and training clinicians to use two decision aids with eligible patients. Data were collected using patient surveys, electronic health record (EHR) data, and qualitative interviews with clinicians. The primary outcome was change in patient‐reported measures of SDM using the collaboRATE items. Results Decision aids were delivered to 1675 patients. Implementation was associated with an increase in referrals to MBS and the number of patients undergoing surgery at KPWA but not at UPMC. Baseline levels of SDM quality were high. Post‐implementation collaboRATE scores decreased significantly, indicating a perceived decline in SDM quality, but not in two other SDM measures. Qualitative feedback highlighted the challenges and successes of integrating SDM tools into clinical practice. Conclusions Implementation of SDM tools had mixed results across the sites. Implementation was associated with an increase in referrals and surgery at KPWA but not at UPMC. The perceived quality of SDM conversations also declined. Future efforts should focus on incorporating all weight management options, including medications and lifestyle interventions.

Engaging communities in research is increasingly recognized as critical to translation of research into improved health outcomes. Our objective was to understand community stakeholders' perspectives on researchers, academic institutions, and how community is valued in research. A 45-item survey assessing experiences and perceptions of research (trust, community value, equity, researcher preparedness, and indicators of successful engagement) was distributed to 226 community members involved in health research with academic institutions. Of the 109 respondents, 60% were racial/ethnic minorities and 78% were women, representing a range of community organizations, faith-based organizations, and public health agencies. Most (57%) reported current involvement with a Clinical and Translational Science Award (CTSA). Only 25% viewed researchers as well-prepared to engage communities and few (13%) reported that resources were available and adequate to support community involvement. Most community stakeholders (66%) were compensated for their involvement in research, but only 40% perceived compensation to be appropriate. Trust of research and perceptions that researchers value community were more positive among those who perceived their compensation as appropriate (P = .001). Appropriate compensation and resources to support community involvement in research may improve perceptions of trust and value in academic-community partnerships. Strategies are needed to increase researcher preparedness to engage with communities.

Amid increasing interest in improving the patient-centeredness of research, new forms of engagement are emerging that enable researchers to get input from community members on research goals, methods, and implementation. This input often includes stories, which are useful for understanding lived experiences of illness and encounters with health care organizations, and for locating these experiences within larger meta-narratives of specific communities. We analyzed the stories in transcripts of 13 Community Engagement Studios and identified 4 major functions that the stories served in the sessions. Major functions included: (1) establishing mutual understanding, (2) adding expansion and depth, (3) characterizing abstract concepts, and (4) providing context for experience, with the latter being the most frequent. We assert that stories can serve to better communicate the complex contexts of patient experiences, helping to align research priorities and research design with community interests, leading to more patient-centered innovations in clinical practice.

COVID-19 vaccine hesitancy and uptake among Southern states in the US has been problematic throughout the pandemic. To characterize COVID-19 vaccine hesitancy and uptake among medically underserved communities in Tennessee. We surveyed 1482 individuals targeting minority communities in Tennessee from 2 October 2021 to 22 June 2022. Participants who indicated that they did not plan to receive or were unsure whether to receive the COVID-19 vaccine were considered vaccine-hesitant. Among participants, 79% had been vaccinated, with roughly 5.4% not likely at all to be vaccinated in the next three months from the date that the survey was conducted. When focusing particularly on Black/AA people and white people, our survey results revealed a significant association between race (Black/AA, white, or people of mixed Black/white ancestry) and vaccination status (vaccinated or unvaccinated) (p-value = 0.013). Approximately 79.1% of all participants received at least one dose of a COVID-19 vaccine. Individuals who were concerned with personal/family/community safety and/or wanted a return to normalcy were less likely to be hesitant. The study found that the major reasons cited for refusing the COVID-19 vaccines were distrust in vaccine safety, concerns about side effects, fear of needles, and vaccine efficacy.

Although bariatric procedures are commonly performed in clinical practice, long-term data on the comparative effectiveness and safety of different procedures on sustained weight loss, comorbidities, and adverse effects are limited, especially in important patient subgroups (eg, individuals with diabetes, older patients, adolescents, and minority patients). The objective of this study was to create a population-based cohort of patients who underwent 3 commonly performed bariatric procedures-adjustable gastric band (AGB), Roux-en-Y gastric bypass (RYGB), and sleeve gastrectomy (SG)-to examine the long-term comparative effectiveness and safety of these procedures in both adults and adolescents. We identified adults (20 to 79 years old) and adolescents (12 to 19 years old) who underwent a primary (first observed) AGB, RYGB, or SG procedure between January 1, 2005 and September 30, 2015 from 42 health systems participating in the Clinical Data Research Networks within the National Patient-Centered Clinical Research Network (PCORnet). We extracted information on patient demographics, encounters with healthcare providers, diagnoses recorded and procedures performed during these encounters, vital signs, and laboratory test results from patients' electronic health records (EHRs). The outcomes of interest included weight change, incidence of major surgery-related adverse events, and diabetes remission and relapse, collected for up to 10 years after the initial bariatric procedure. A total of 65,093 adults and 777 adolescents met the eligibility criteria of the study. The adult subcohort had a mean age of 45 years and was predominantly female (79.30%, 51,619/65,093). Among adult patients with non-missing race or ethnicity information, 72.08% (41,248/57,227) were White, 21.13% (12,094/57,227) were Black, and 20.58% (13,094/63,637) were Hispanic. The average highest body mass index (BMI) recorded in the year prior to surgery was 49 kg/m . RYGB was the most common bariatric procedure among adults (49.48%, 32,208/65,093), followed by SG (45.62%, 29,693/65,093) and AGB (4.90%, 3192/65,093). The mean age of the adolescent subcohort was 17 years and 77.5% (602/777) were female. Among adolescent patients with known race or ethnicity information, 67.3% (473/703) were White, 22.6% (159/703) were Black, and 18.0% (124/689) were Hispanic. The average highest recorded BMI in the year preceding surgery was 53 kg/m . The majority of the adolescent patients received SG (60.4%, 469/777), followed by RYGB (30.8%, 239/777) and AGB (8.9%, 69/777). A BMI measurement (proxy for follow-up) was available in 84.31% (44,978/53,351), 68.09% (20,783/30,521), and 68.56% (7159/10,442) of the eligible adult patients at 1, 3, and 5 years of follow-up, respectively. The corresponding proportion was 82.0% (524/639), 49.9% (174/349), and 38.8% (47/121) in the adolescent subcohort. Our study cohort is one of the largest cohorts of patients with bariatric procedures in the United States. Patients are geographically and demographically diverse, which improves the generalizability of the research findings and allows examination of treatment effect heterogeneity. Ongoing and planned investigations will provide real-world evidence on the long-term benefits and risks of these most commonly used bariatric procedures in current clinical practice.