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Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for adult screening

Authors:

Hadley Stevens Smith, Caryn Kseniya Rubanovich, Jill Oliver Robinson, Ariel N. Levchenko, Sarah A. Classen, Janet Malek, Adam H. Buchanan, Barbara Biesecker, Kyle B. Brothers, Benjamin S. Wilfond, Christine Rini, Cinnamon S. Bloss, Amy L. McGuire & Sara J. Knight

University of Washington affiliated authors are displayed in bold.

Subscription Required for Full Text Access

Published: August 2024

Read the full text in the subscription access journal Genetics in Medicine

✪ Implementation Science for HIV Prevention and Treatment in Indigenous Communities: a Systematic Review and Commentary

Authors:

Christopher G. Kemp (Ngāi Tahu), Abagail J. Edwards, Lauren White (Choctaw Nation of Oklahoma), Gauri Kore, Pamela Jumper Thurman (Cherokee), Tommi Gaines (Navajo, Hopi), Paula Toko King (Te Aupōuri, Te Rarawa, Ngāpuhi, Ngāti Whātua, Waikato Tainui, Ngāti Maniapoto), Marama Cole (Ngāti Kahungunu, Ngāti Porou) & E. Roberto Orellana (Maya)

University of Washington affiliated authors are displayed in bold.

✪ Open Access

Published: August 2024

Read the full text in the open access journal Current HIV/AIDS Reports

Abstract:

Purpose of Review

We systematically reviewed implementation research conducted in Indigenous communities in the Americas and the Pacific that focused on improving delivery of HIV preventive or treatment services. We highlight strengths and opportunities in the literature and outline principles for Indigenous-led, HIV-related implementation science.

Recent Findings

We identified 31 studies, revealing a consistent emphasis on cultural tailoring of services to Indigenous communities. Common barriers to implementation included stigma, geographic limitations, confidentiality concerns, language barriers, and mistrust. Community involvement in intervention development and delivery emerged as a key facilitator, and nearly half of the studies used community-based participatory research methods. While behavioral HIV prevention, especially among Indigenous youth, was a major focus, there was limited research on biomedical HIV prevention and treatment. No randomized implementation trials were identified.

Summary

The findings underscore the importance of community engagement, the need for interventions developed within Indigenous communities rather than merely adapted, and the value of addressing the social determinants of implementation success. Aligned to these principles, an indigenized implementation science could enhance the acceptability and reach of critical HIV preventive and treatment services in Indigenous communities while also honoring their knowledge, wisdom, and strength.

**This abstract is posted with permission under the Creative Commons Attribution 4.0 International License**

Employing user-centered design to develop a remote technology kit for studying young children’s social communication skills

Authors:

Marisa Petruccelli, Mya Howard, Andres Morelos, Allison Wainer, Sarabeth Broder-Fingert, Brooke Ingersoll, Wendy L Stone & Alice S Carter

University of Washington affiliated authors are displayed in bold.

Subscription Required for Full Text Access

Published: August 2024

Read the full text in the subscription access journal Journal of Pediatric Psychology

✪ Implementation of a bilingual and bicultural navigation program for Hispanic children with traumatic brain injuries

Authors:

Celeste N. Garcia, Magaly Ramirez, Tasnia Alam, Linda K. Ko & Nathalia Jimenez

University of Washington affiliated authors are displayed in bold.

✪ Open Access

Published: August 2024

Read the full text in the open access journal Brain Injury

Abstract:

Background

Traumatic brain injury (TBI) disproportionately affects Hispanic children, with higher rates of severe injuries and worse outcomes compared to non-Hispanic White children. Patient navigation has shown effectiveness in improving health outcomes among Hispanic populations. However, culturally tailored navigation programs for pediatric TBI are lacking, and knowledge gaps remain regarding contextual factors influencing the implementation of these programs. This study examined factors that facilitate or hinder the implementation of a bilingual and bicultural navigation program for caregivers of Hispanic children with TBIs.

Methods

In-depth interviews were conducted with 12 personnel involved in implementing the 1st Brain Injury Education and Outpatient Navigation (1st BIEN) program across four states. Directed content analysis was used based on the Consolidated Framework for Implementation Research (CFIR) to guide the development of the interview guide and data analysis.

Results

Key facilitators included the program’s adaptability to patient needs, bilingual/bicultural patient navigator’s skills, and alignment with organizational values. Barriers included restrictive healthcare regulatory policies hindering interinstitutional work, incomplete medical records, and gaps in behavioral support training.

Discussion

These findings offer insights for optimizing the implementation of patient navigation programs in pediatric TBI care, potentially improving access to care and reducing disparities for Hispanic children with brain injuries.

**This abstract is posted with permission under the Creative Commons Attribution 4.0 International License**

Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for pediatric diagnostic testing

Authors:

Hadley Stevens Smith, Caryn Kseniya Rubanovich, Jill Oliver Robinson, Ariel N. Levchenko, Sarah A. Classen, Janet Malek, Barbara Biesecker, Kyle B. Brothers, Benjamin S. Wilfond, Christine Rini, Sara J. Knight, Amy L. McGuire & Cinnamon S. Bloss

University of Washington affiliated authors are displayed in bold.

Subscription Required for Full Text Access

Published: August 2024

Read the full text in the subscription access journal Genetics in Medicine

✪ Increasing goals of care conversations in primary care: Study protocol for a cluster randomized, pragmatic, sequential multiple assignment randomized trial

Authors:

David B. Bekelman, Karleen Giannitrapani, Kristin A. Linn, Paula Langner, Rebecca L. Sudore, Borsika Rabin, Karl A. Lorenz, Marybeth Foglia, Amanda Glickman, Scott Pawlikowski, Marilyn Sloan, Raziel C. Gamboa, Matthew D. McCaa, Anne Hines & Anne M. Walling

University of Washington affiliated authors are displayed in bold.

✪ Open Access

Published: July 2024

Read the full text in the open access journal Contemporary Clinical Trials

Abstract:

Background

Goals of care conversations explore seriously ill patients' values to guide medical decision making and often inform decisions about life sustaining treatments. Ideally, conversations occur before a health crisis between patients and clinicians in the outpatient setting. In the United States Veterans Affairs (VA) healthcare system, most conversations still occur in the inpatient setting. Strategies are needed to improve implementation of outpatient, primary care goals of care conversations.

Methods

We plan a cluster randomized (clinician-level) sequential, multiple assignment randomized trial to evaluate the effectiveness of patient implementation strategies on the outcome of goals of care conversation documentation when delivered in combination with clinician implementation strategies. Across three VA healthcare system sites, we will enroll primary care clinicians with low rates of goals of care conversations and their patients with serious medical illness in the top 10th percentile of risk of hospitalization or death. We will compare the effectiveness of sequences of implementation strategies and explore how patient and site factors modify implementation strategy effects. Finally, we will conduct a mixed-methods evaluation to understand implementation strategy success or failure. The design includes two key innovations: (1) strategies that target both clinicians and patients and (2) sequential strategies with increased intensity for non-responders.

Conclusion

This study aims to determine the effect of different sequences and combinations of implementation strategies on primary care documentation of goals of care conversations. Study partners, including the VA National Center for Ethics in Health Care and Office of Primary Care, can consider policies based on study findings.

**This abstract is posted with permission under the Creative Commons Attribution 4.0 International License**

✪ Implementing evidence-based practices to improve primary care for high-risk patients: study protocol for the VA high-RIsk VETerans (RIVET) type III effectiveness-implementation trial

Authors:

Elvira E. Jimenez, Ann-Marie Rosland, Susan E. Stockdale, Ashok Reddy, Michelle S. Wong, Natasha Torrence, Alexis Huynh & Evelyn T. Chang

University of Washington affiliated authors are displayed in bold.

✪ Open Access

Published: July 2024

Read the full text in the open access journal Implementation Science Communications

Abstract:

Background

Patients with significant multimorbidity and other factors that make healthcare challenging to access and coordinate are at high risk for poor health outcomes. Although most (93%) of Veterans’ Health Administration (VHA) patients at high risk for hospitalization or death (“high-risk Veterans”) are primarily managed by primary care teams, few of these teams have implemented evidence-based practices (EBPs) known to improve outcomes for the high-risk patient population’s complex healthcare issues. Effective implementation strategies could increase adoption of these EBPs in primary care; however, the most effective implementation strategies to increase evidence-based care for high-risk patients are unknown.

The high-RIsk VETerans (RIVET) Quality Enhancement Research Initiative (QUERI) will compare two variants of Evidence-Based Quality Improvement (EBQI) strategies to implement two distinct EBPs for high-risk Veterans: individual coaching (EBQI-IC; tailored training with individual implementation sites to meet site-specific needs) versus learning collaborative (EBQI-LC; implementation sites trained in groups to encourage collaboration among sites). One EBP, Comprehensive Assessment and Care Planning (CACP), guides teams in addressing patients’ cognitive, functional, and social needs through a comprehensive care plan. The other EBP, Medication Adherence Assessment (MAA), addresses common challenges to medication adherence using a patient-centered approach.

Methods

We will recruit and randomize 16 sites to either EBQI-IC or EBQI-LC to implement one of the EBPs, chosen by the site. Each site will have a site champion (front-line staff) who will participate in 18 months of EBQI facilitation.

Analysis

We will use a mixed-methods type 3 hybrid Effectiveness-Implementation trial to test EBQI-IC versus EBQI-LC versus usual care using a Concurrent Stepped Wedge design. We will use the Practical, Robust Implementation and Sustainability Model (PRISM) framework to compare and evaluate Reach, Effectiveness, Adoption, Implementation, and costs. We will then assess the maintenance/sustainment and spread of both EBPs in primary care after the 18-month implementation period. Our primary outcome will be Reach, measured by the percentage of eligible high-risk patients who received the EBP.

Discussion

Our study will identify which implementation strategy is most effective overall, and under various contexts, accounting for unique barriers, facilitators, EBP characteristics, and adaptations. Ultimately this study will identify ways for primary care clinics and teams to choose implementation strategies that can improve care and outcomes for patients with complex healthcare needs.

Trial registration

ClinicalTrials.gov, NCT05050643. Registered September 9th, 2021, https://clinicaltrials.gov/study/NCT05050643

Protocol version

This protocol is Version 1.0 which was created on 6/3/2020.

Contributions to the literature
  • The first study to compare the effectiveness of Evidence-Based Quality Improvement (EBQI) conducted individually with one site or conducted with a group of sites.
  • Implementation of evidence-based practices to improve care for high-risk patients in primary care.

**This abstract is posted with permission under the Creative Commons Attribution 4.0 International License**

✪ Relevance of learning health systems to physiatrists and its synergy with implementation science: A commentary

Authors:

Thiru M Annaswamy, Prateek Grove, Natalie F Douglas, Kathleen Poploski, Catherine A Anderson, Melissa A Clark, Ann Marie Flores, Brian J Hafner, Jeanne M Hoffman, Adam R Kinney, Kristin Ressel, Jennifer Sánchez , Margarite J Whitten, Linda Resnik, Christine M McDonough

University of Washington affiliated authors are displayed in bold.

✪ Open Access

Published: July 2024

Read the full text open access in The Journal of Injury, Function, and Rehabilitation

Abstract:

As health care attempts to bridge the gap between evidence and practice, the concept of the learning health system (LHS) is becoming increasingly relevant. LHS integrates evidence with health systems data, driving health care quality and outcomes through updates in policy, practice, and care delivery. In addition, LHS research is becoming critically important as there are several initiatives underway to increase research capacity, expertise, and implementation, including attempts to stimulate increasing numbers of LHS researchers. Physical Medicine & Rehabilitation (PM&R) physicians (physiatrists), nurses, therapists (physical therapists, occupational therapists, speech therapists, clinical psychologists), and scientists are affiliated with LHSs. As LHS research expands in health care systems, better awareness and understanding of LHSs and LHS research competencies are key for rehabilitation professionals including physiatrists. To address this need, the Agency of Healthcare Research and Quality (AHRQ) identified 33 core competencies, grouped into eight domains, for training LHS researchers. The domains are: (1) Systems Science; (2) Research Questions and Standards of Scientific Evidence; (3) Research Methods; (4) Informatics; (5) Ethics of Research and Implementation in Health Systems; (6) Improvement and Implementation Science; (7) Engagement, Leadership, and Research Management; and the recently added (8) Health and Healthcare Equity and Justice. The purpose of this commentary is to define LHS and its relevance to physiatrists, present the role of implementation science (IS) in LHSs and application of IS principles to design LHSs, illustrate current LHS research in rehabilitation, and discuss potential solutions to improve awareness and to stimulate interest in LHS research and IS among physiatrists in LHSs.

**This abstract is posted with permission under the Creative Commons Attribution 4.0 International License**

Better Guidelines and Policies: AAP’s Partnership for Policy Implementation

Authors:

Christoph U. Lehmann, William G. Adams, Juan D. Chaparro, Alexander G. Fiks, Randall W. Grout, Michael G. Leu, Eneida A. Mendonca, Jeremy J. Michel, Kymika Okechukwu, Jeremiah Salmon, Mona Sharifi, & Stephen M. Downs

University of Washington affiliated authors are displayed in bold.

Subscription Required for Full Text Access

Published: July 2024

Read the full text in the subscription access journal Pediatrics

✪ “Veteran to Veteran, there’s automatically a trust”: A qualitative study of Veterans’ experiences in a peer health coaching program for hypertension

Authors:

C. Bradley Kramer, Karin M. Nelson, George Sayre, Jennifer L Williams, Leon Spruill, Tiffanie Fennell, Kristen E. Gray, Bryan J. Weiner, Vincent Fan, Jessica Jones-Smith, & Mayuree Rao

University of Washington affiliated authors are displayed in bold.

✪ Open Access

Published: July 2024

Read the full text open access in the journal AJPM Focus