Acceptability of Adolescent Portal Access Policies to Parents and Adolescents: A Delphi Study.

Purpose: United States healthcare systems have enacted varied adolescent online patient portal policies. No prior work has established whether these policies are acceptable to adolescents and parents.

Methods: Mixed-method Delphi approach with 18 parents and 18 adolescents with and without chronic illness.

Leadership, management, and team practices in research labs: Development and validation of two new measures.

Background: Effective leadership and management practices contribute to responsible, high-quality research and the well-being of team members. We describe the development and initial validation of a measure assessing principal investigators' leadership and management practices and a measure of research team practices.

Methods: Using a cross-sectional survey design, 570 postdoctoral researchers funded by the National Institutes of Health reported on the perceived behaviors of their principal investigator (PI) and the research team.

The Bioethicist as Healer.

Combativeness is a social illness. We are surrounded by culture wars over abortion, vaccine mandates, transgender care, how we die, and even how we define death. The problem is not that we disagree, but how we disagree: too often, with anger, aggression, and a sense of urgency to win against the other.

A training protocol compliance of 13% was observed in a research study of clinical research professionals.

Objective: We attempted to conduct a randomized controlled trial of three different informed consent training formats to evaluate their effectiveness. We recruited 503 clinical research professionals, who received $50 for participation. Incidental findings showed unexpectedly low rates of compliance with completing the study training protocols, resulting in insufficient statistical power to test our original hypotheses.

Barriers and Facilitators to Youth Decision-Making Involvement in Families Referred for Stem Cell Transplant.

Youth prefer to be involved in treatment decisions, yet youth participation is minimally present in decisions like stem cell transplant (SCT) that require frequent medications and social isolation to be successful in curing cancer and chronic illness. The purpose of our study is to identify the barriers and facilitators to youth decision-making involvement in the youth-parent interaction when referred for treatment with SCT. We report qualitative findings from our theory-driven mixed-methods study.

Seeking help as a strategy for ethical and professional decision-making in research: Perspectives of researchers from East Asia and the United States.

: A person's cultural background shapes how they interpret and navigate problems. Given that large numbers of international researchers work and train in the U.S.

Providing Adolescents with Access to Online Patient Portals: Interviews with Parent-Adolescent Dyads.

Objective: To identify perceived benefits, problems, facilitators, and barriers to adolescent online patient portal use.

Study Design: Qualitative, semi-structured interviews with dyads of parents and adolescents with or without chronic illness. The study team purposively sampled for racial and ethnic minorities and fathers.

Guiding Principles for Adolescent Web-Based Portal Access Policies: Interviews With Informatics Administrators.

Background: Web-based patient portals are tools that could support adolescents in managing their health and developing autonomy. However, informatics administrators must navigate competing interests when developing portal access policies for adolescents and their parents.

Objective: We aimed to assess the perspectives of informatics administrators on guiding principles for the development of web-based health care portal access policies in adolescent health care.

Evaluating ApoL1 Genetic Testing Policy Options for Transplant Centers: A Delphi Consensus Panel Project with Stakeholders.

Background: Apolipoprotein L1 (ApoL1) variants G1 and G2 are associated with a higher risk of kidney disease. ApoL1 risk variants are predominantly seen in individuals with sub-Saharan African ancestry. In most transplant centers, potential organ donors are being selectively genetically tested for ApoL1 risk variants.

Reproductive decision making in women with medical comorbidities: a qualitative study.

Background: A growing number of reproductive-age women in the U.S. have chronic medical conditions, increasing their risk of perinatal morbidity and mortality.

Oncology Clinicians' Perspectives on Online Patient Portal Use in Pediatric and Adolescent Cancer.

Purpose: Online patient portals represent widely available communication tools in pediatric oncology. Previous studies have not evaluated clinicians' perspectives on portal use, including issues related to access to adolescents' portals.

Methods: We performed semistructured interviews with physicians and advanced practice providers (APPs) who care for children or adolescents with cancer.

Exchanging words: Engaging the challenges of sharing qualitative research data.

In January 2023, a new NIH policy on data sharing went into effect. The policy applies to both quantitative and qualitative research (QR) data such as data from interviews or focus groups. QR data are often sensitive and difficult to deidentify, and thus have rarely been shared in the United States.

Engaging Adolescents in Using Online Patient Portals.

Importance: Many health care systems offer adolescents access to health information through online patient portals, but few studies have explored how to engage adolescents in using and benefiting from online portals.

Objective: To determine how US children's hospitals have attempted to encourage adolescent portal use, barriers to engaging adolescents, and ideal future goals for engagement.

Design, Setting, And Participants: This qualitative study performed structured qualitative interviews with informatics administrators from children's hospitals across the US between February and July 2022.

Challenges to Developing and Implementing Policies for Adolescent Online Portal Access.

Background: After enactment of the 21st Century Cures Act, many health care systems offer adolescents and parents access to electronic health information through online portals. Few studies have evaluated adolescent portal access policies since the implementation of the Cures Act.

Methods: We performed structured interviews with informatics administrators in US hospitals with ≥50 dedicated pediatric beds.

Addressing serious and continuing research noncompliance and integrity violations through action plans: Interviews with institutional officials.

Serious and continuing research noncompliance and integrity violations undermine the quality of research and trust in science. When researchers engage in these behaviors, institutional officials (IOs) often develop corrective action plans. Ideally, such plans address the root causes so noncompliance or research integrity violations discontinue.

Barriers to Using Legally Authorized Representatives in Clinical Research with Older Adults.

Background: Older adults are at increased risk of cognitive impairments including Alzheimer's disease dementia. Legally authorized representatives (LARs) can provide informed consent when a participant is no longer able to, but little is known about barriers to incorporating them in research.

Objective: Explore reasons for not asking and documenting participant decisions to appoint LARs among researchers conducting clinical intervention trials studying older adults or individuals with cognitive impairments.

A survey of solid organ transplant recipient attitudes and concerns regarding contraception and pregnancy.

Introduction: Many women who are solid organ transplant (SOT) recipients wish to have children after transplantation. Contraception is an important component of post-transplant planning and care, given the increased risk associated with post-transplant pregnancies. We sought to understand patient attitudes and concerns about post-transplant contraception and pregnancy.

A randomized implementation trial to increase adoption of evidence-informed consent practices.

Introduction: Several evidence-informed consent practices (ECPs) have been shown to improve informed consent in clinical trials but are not routinely used. These include optimizing consent formatting, using plain language, using validated instruments to assess understanding, and involving legally authorized representatives when appropriate. We hypothesized that participants receiving an implementation science toolkit and a social media push would have increased adoption of ECPs and other outcomes.

Advice to Clinicians on Communication from Adolescents and Young Adults with Cancer and Parents of Children with Cancer.

Effective communication is integral to patient and family-centered care in pediatric and adolescent and young adult (AYA) oncology and improving healthcare delivery and outcomes. There is limited knowledge about whether AYAs and parents have similar communication preferences and needs. By eliciting and comparing communication advice from AYAs and parents, we can identify salient guidance for how clinicians can better communicate.

Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.

Geographical ancestry has been associated with an increased risk of various genetic conditions. Race and ethnicity often have been used as proxies for geographical ancestry. Despite numerous problems associated with the crude reliance on race and ethnicity as proxies for geographical ancestry, some genetic testing in the clinical, research, and employment settings has been and continues to be race- or ethnicity-based.

What Can State Medical Boards Do to Effectively Address Serious Ethical Violations?

State Medical Boards (SMBs) can take severe disciplinary actions (e.g., license revocation or suspension) against physicians who commit egregious wrongdoing in order to protect the public.