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In 2017, the NYU Clinical and Translational Science Institute's Recruitment and Retention Unit created a Patient Advisory Council for Research (PACR) to provide feedback on clinical trials and health research studies. We collaborated with our clinical research informatics team to generate a random sample of patients, based on the International Classification of Diseases, Tenth Revision codes and demographic factors, for invitation via the patient portal. This approach yielded in a group that was diverse with regard to age, race/ethnicity, sex, and health conditions. This report highlights the benefits and limitations of using an electronic health record-based strategy to identify and recruit members for a PACR. [ABSTRACT FROM AUTHOR]

Recruitment challenges in clinical research are widespread, particularly for traditionally under-represented groups. Referral relationships-in which research partners and clinical partners agree to collaborate on selected research studies or programmes, with the expectation that the clinical partners refer appropriate patients as potential participants-may help alleviate these challenges. Referral relationships allow research partners access to expanded and more diverse pools of participants by increasing the engagement of medical providers, leveraging providers' connections with patients and providing structural support for study participation. Clinical partners can also benefit from the resources offered by research involvement, and patients may benefit from improved access to studies. Yet despite their potential, referral relationships can raise ethical concerns. Here, we discuss ethical considerations for referral relationships in clinical research to address these concerns. When establishing relationships, fair participant selection should guide the sites and studies involved. When defining the terms of a relationship, partners should build trust and respect, collaborating so that health centres or hospitals and communities benefit from their research involvement with the mitigation of associated burdens. When implemented, referral relationships should continue to honour fair participant selection, reduce misunderstanding or miscommunication about research and protect patients' privacy and confidentiality. Overall, when conducted ethically, referral relationships can help address study recruitment challenges and promote fair access to research opportunities., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ Group.)

Introduction/purpose: Efforts to improve chronic disease outcomes among US adults highlight families, particularly support from families, as a key aspect of disease prevention and management. To date, however, an overwhelming focus on individual-level outcomes and unidirectional support (eg, from a family caregiver to an identified care recipient) belies the existence of co-occurring health concerns and interdependent care. There are increasing calls for more sophisticated and intensive family health interventions that better integrate family-level factors, processes, and outcomes to provide comprehensive family support services in health care and community-based settings., Methods: This commentary provides key considerations for advancing this work while centering family health equity and families themselves in health initiatives., Results: Several critical barriers are identified and discussed. For example, a narrow focus on family and inadequate measures of family-level disease burden make it challenging to understand how the disproportionate burden of chronic disease observed among individuals of lower socioeconomic status and certain racial and ethnic groups compounds and complicates family health experiences. In addition, limited attention to the interaction between individuals, families, and broader sociocultural factors that influence family resources and constraints, such as racism, hamper program design, implementation, and evaluation., Conclusion: To center families in efforts to reduce chronic disease disparities, it is necessary to move beyond superficial attention to the complexity of disease prevention and management within the family context. This commentary serves to enhance understanding of important drivers of family-level chronic disease outcomes, while providing important considerations for advancing research and practice., Competing Interests: Conflict of Interest: No conflicts of interest reported by authors.

Background: Decision Aids (DAs) effectively translate medical evidence for patients but are not routinely used in clinical practice. Little is known about how DAs are used during patient-clinician encounters., Objective: To characterize the content and communicative function of high-quality DAs during diagnostic clinic visits for prostate cancer., Participants: 252 men newly diagnosed with localized prostate cancer who had received a DA, 45 treating physicians at 4 US Veterans Administration urology clinics., Methods: Qualitative analysis of transcribed audio recordings was used to inductively develop categories capturing content and function of all direct references to DAs (booklet talk). The presence or absence of any booklet talk per transcript was also calculated., Results: Booklet talk occurred in 55% of transcripts. Content focused on surgical procedures (36%); treatment choice (22%); and clarifying risk classification (17%). The most common function of booklet talk was patient corroboration of physicians' explanations (42%), followed by either physician or patient acknowledgement that the patient had the booklet. Codes reflected the absence of DA use for shared decision-making. In regression analysis, predictors of booklet talk were fewer years of patient education (P = .027) and more time in the encounter (P = .027). Patient race, DA type, time reading the DA, physician informing quality and physician age did not predict booklet talk., Conclusions: Results show that good decision aids, systematically provided to patients, appeared to function not to open up deliberations about how to balance benefits and harms of competing treatments, but rather to allow patients to ask narrow technical questions about recommended treatments., (© 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.)

Action Through Churches in Time to Save Lives (ACTS) of Wellness was a cluster randomized controlled trial developed to promote colorectal cancer screening and physical activity (PA) within urban African American churches. Churches were recruited from North Carolina (n = 12) and Michigan (n = 7) and were randomized to intervention (n = 10) or comparison (n = 9). Intervention participants received three mailed tailored newsletters addressing colorectal cancer screening and PA behaviors over approximately 6 months. Individuals who were not up-to-date for screening at baseline could also receive motivational calls from a peer counselor. The main outcomes were up-to-date colorectal cancer screening and Metabolic Equivalency Task (MET)-hours/week of moderate-vigorous PA. Multivariate analyses examined changes in the main outcomes controlling for church cluster, gender, marital status, weight, and baseline values. Baseline screening was high in both intervention (75.9%, n = 374) and comparison groups (73.7%, n = 338). Screening increased at follow-up: +6.4 and +4.7 percentage points for intervention and comparison, respectively (p = .25). Baseline MET-hours/week of PA was 7.8 (95% confidence interval [6.8, 8.7]) for intervention and 8.7 (95% confidence interval [7.6, 9.8]) for the comparison group. There were no significant changes (p = .15) in PA for intervention (-0.30 MET-hours/week) compared with the comparison (-0.05 MET-hours/week). Among intervention participants, PA increased more for those who participated in church exercise programs, and screening improved more for those who spoke with a peer counselor or recalled the newsletters. Overall, the intervention did not improve PA or screening in an urban church population. These findings support previous research indicating that structured PA opportunities are necessary to promote change in PA and churches need more support to initiate effective peer counselor programs., (© 2015 Society for Public Health Education.)