Community & Stakeholder Engagement Archives - Implementation Science at UW

✪ A cross-consortium, stakeholder-driven model for implementing a modern electronic data capture and submission system across the Alzheimer’s Disease Research Centers Program

Authors:

Sarah Biber, Sarah Gothard, Charles F Murchison, Laura McLeod, Kathryn Gauthreaux, Chandima HewaNadungodage, Emily Cheng, Jessica Welsch, Jessica E. Culhane, Sarah Yasuda, Hannah Stockwell, Shilpa Allimatti, Mark Bauer, Jonathan M. Reader, Walter Kukull, Meredith Zozus & Sudeshna Das

^{University of Washington affiliated authors are displayed in bold.}

✪ Open Access

Published: March 2026

Read the full text in the open access Alzheimer's & Dementia: The Journal of the Alzheimer's Association

Abstract:

INTRODUCTION

The National Alzheimer's Coordinating Center (NACC) and Alzheimer's Disease Research Center (ADRC) Program advances dementia research by collecting and sharing standardized, longitudinal data, including the Uniform Data Set with the global research community. To modernize workflow and accelerate the availability of analyzable data, we co-developed a consortium-wide Electronic Data Capture and Submission system.

METHODS

A cross-disciplinary workgroup of ADRC and NACC members co-developed the system using a stakeholder-centered sociotechnical implementation model. Subgroups focused on requirements, development, and training. Surveys and pilot testing across centers guided design and priorities.

RESULTS

Research Electronic Data Capture was selected as the foundational platform. Deliverables included modular UDS version 4 instruments, embedded logic and automated quality checks, dynamic training resources, and an API-based submission pipeline to NACC. The platform was adopted across all 36 ADRCs and surveys indicated high user satisfaction.

DISCUSSION

Beyond infrastructure, this initiative provides a scalable, stakeholder-driven implementation model that supports higher-quality, more timely multicenter data submission, accelerating biomarker validation, early detection studies, and precision-medicine analyses.

Highlights

A cross-disciplinary workgroup of ADRC and NACC members designed a stakeholder-centric sociotechnical implementation model.
The workgroup drove the adoption of a modernized data infrastructure across a national consortium.
Deployed a modern electronic data capture and submission system for the ADRC program.
Leveraged REDCap as a flexible, scalable tool for a large-scale EDCS system.

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

Qualitative assessment of facilitators and barriers to testicular torsion care: Findings from the testicular torsion collaborative

✪ Process evaluation and lessons learned from the formation of a multi-sector partnership: the Healing Experiences of Adversity among Latinos (HEALthy4You)

Authors:

Clare Viglione, Amy Westermann, Job Godino, Kyung E Rhee, Blanca Melendrez, Xin M Tu, David L Boyle, Michael Hogarth, Gregory A Aarons, Noe C Crespo, Pradeep Gidwani, Margarita Holguin, Cynthia Juarez, Deysi B Merino-Gonzalez, Liliana Osorio, Herminia Ramirez, Micaela Smith, Alec Terrana, Gary S Firestein & Eric Hekler

^{University of Washington affiliated authors are displayed in bold.}

✪ Open Access

Published: October 2025

Read the full text in the open access journal Frontiers in Health Services

Abstract:

The Healing Experiences of Adversity Among Latinos (HEALthy4You; H4Y) study was a multi-sector partnership between an academic research institution, a Federally Qualified Health Center (FQHC), and a multi-sector collective impact coalition focused on childhood obesity prevention. The goal of HEALthy4You was to develop community-centered and culturally appropriate precision interventions within FQHCs for Latino families to address predictors of adverse child experiences and treat childhood obesity. A multidisciplinary and multi-sector research, clinical, and community team (N = 29) was formed in September 2020 to co-design the study, which launched in June 2022. The team utilized a co-creation approach combined with the Exploration, Preparation, Implementation, and Sustainment framework to facilitate a collaborative design process. We conducted an internal and retrospective process evaluation in March 2023 to identify antecedents and situational factors associated with project formation, with a focus on understanding tensions and challenges with a broad partnership structure. We outline the team's co-creation process and describe internal challenges and pitfalls that emerged when developing the project. We sought to better understand the impact of differing perspectives, priorities, and goals between disciplines, sectors, and roles; differing approaches to evidence and evidence production; and team strategies to mitigate and manage competing pressures and priorities. This case report describes lessons learned, intending to share insights to support future development of best practices in project, partner, and team formation between researchers, clinicians, and community members. More specifically, these lessons could help inform community-led research endeavors between academic institutions, FQHCs, and community-based organizations (CBOs).

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

✪ Up-front alternative donor HCT in severe aplastic anemia: gaps and opportunities to translate evidence into practice

Abstract:

Severe aplastic anemia (SAA) is a rare and life-threatening bone marrow failure disorder. Immunosuppressive therapy (IST) with antithymocyte globulin and cyclosporine has long been a frontline treatment option in SAA; however, its limited durability and risk of long-term complications such as secondary malignancies remain a drawback in this treatment modality. Allogeneic hematopoietic cell transplantation (HCT) is a potentially curative option with significantly improved outcomes over the long term, particularly with HLA-matched related donors. However, the use of alternative donors, such as haploidentical, mismatched, or matched unrelated donors, has previously been limited due to increased transplant-related morbidity, particularly graft-versus-host disease (GVHD). HCTs have therefore been limited to young recipients and those with HLA-matched related donors, creating significant disparity for older adults and those who lack matched donor options. Nevertheless, more recent advances in HCT, such as posttransplant cyclophosphamide for GVHD prophylaxis, have led to improved outcomes of HCT with alternative donors; however, alternative donor HCT remains underused as up-front therapy, in part because of limited multicenter trial data. This review discusses current SAA treatment approaches, including both IST and HCT, and highlights remaining gaps. It also discusses how ongoing clinical trials such as CureAA and TransIT could help address these gaps. Furthermore, we discuss the importance of stakeholder engagement and implementation science in the integration of research-based evidence into clinical practice. Bridging these gaps is necessary for achieving equitable access for patients historically excluded from frontline HCT, including older adults and racially or ethnically diverse populations.

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

Conducting an implementation intervention study with American Indian and Alaska Native communities: Methodological considerations

✪ Optimizing healthcare for blood donors at risk of transfusion-transmissible infections: pre-implementation mixed methods protocol

Abstract:

In the Peruvian Amazon, a significant proportion of replacement blood donors test reactive for HIV, HTLV-1/2, and other transfusion-transmissible infections but often receive no subsequent care. Optimizing healthcare for these individuals can mitigate adverse outcomes by enabling early diagnosis and management. Effective coordination between Blood Bank and Infectious Diseases services is essential to provide comprehensive care. To address this challenge, this study applies an Implementation Science approach to design and assess an innovation that enhances healthcare for blood donors affected by transfusion-transmissible infections. A pre-implementation mixed methods study will be conducted at two hospitals in the Peruvian Amazon, employing the Consolidated Framework for Implementation Research (CFIR) and a systems engineering tool (mapping). The study will focus on the inner setting domain of CFIR and map the care continuum to identify contextual determinants that may influence implementation. It has three specific aims planned for the future: first, to use a convergent mixed methods approach to examine the care continuum of blood donors and the inner settings; second, to co-design an innovation through qualitative and participatory methods, integrating Blood Bank and Infectious Diseases services via the hospital information management system; and third, to evaluate the feasibility, appropriateness, and acceptability of the co-designed innovation through a pilot. Replacement blood donation and fragmented healthcare systems are common challenges in other low- and middle-income countries. The findings of this study can inform future implementation research and policy in similar settings.

Paper context

Main findings: This study will co-design and pilot an innovation to improve how blood donors at risk of transfusion-transmissible infections receive screening results, confirmatory testing, and care, by integrating Blood Bank and Infectious Diseases services through digital tools.

Added knowledge: This study employs a participatory, mixed-methods implementation science approach to systematically assess and address gaps in blood donor healthcare, providing a scalable methodology while ensuring context-specific, actionable interventions for resource-limited settings.

Global health impact for policy and action: This study will drive digital innovations in blood donor healthcare to strengthen blood safety and infectious disease control, while framing a pragmatic, adaptable approach for integrating fragmented healthcare systems in resource-limited settings.

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

✪ Community/patient group champion team retrospective look at engage for equity PLUS: Results from a post-intervention champion team focus group

Abstract:

Community/patient voice has long been stifled in favor of the priorities of powerful health organizations that set the agenda for institutional practices and policies shaping health equity research. Academic Health Centers (AHC) and Clinical Translational Science Centers (CTSC) promote missions that are often unaligned with the realities of community and patient experiences when interacting with researchers and representatives from these institutions. Implementation science has increasingly adopted collaborative and participatory approaches to the design and implementation of health interventions co-created with community/patient group members as equal participants within community-academic partnerships. Community-based participatory research/community-engaged research are widely recognized as approaches to health intervention research that offers the potential for community-patient voice to be heard when the principles of authentic participatory research are adhered to throughout all aspects of the project. For AHC’s and CTSC’s to be fully engaged, the populations they serve must have access to institutional leadership and influence over decision-making about the organizational resources allocated to community/patient groups beyond efforts to cultivate a positive public image. The E2 community/patient champion team focus groups provide unique perspectives on how equitable institutional transformation can be accomplished in a retrospective assessment of the E2 PLUS Intervention.

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

✪ Impact of a stakeholder selected implementation strategy package – fast tracking, provider re-training, and co-location – on PrEP implementation for pregnant women in antenatal care clinics in western Kenya

Abstract:

Background

Pre-exposure prophylaxis (PrEP) is recommended for HIV prevention in pregnant and postpartum women at substantial ongoing risk for HIV. In resource-limited settings, there exist gaps in the integration of PrEP into antenatal care.

Methods

We conducted a difference-in-differences analytic approach (3 months pre- and 3 months post) between January 2022 and July 2022 in 8 facilities (4 intervention and 4 comparison) in western Kenya. During the 6-month period, we tested a combination of 2 stakeholder selected implementation strategies – retraining health providers and fast tracking PrEP clients– to improve PrEP delivery. All study facilities dispensed PrEP in the Maternal and Child health clinics (MCH). We evaluated absolute changes in: PrEP penetration, PrEP fidelity, client PrEP knowledge, client satisfaction, and client waiting and service times as outcomes specified a priori while PrEP offer and HIV testing were outcomes specified post hoc. We measured acceptability and appropriateness by providers of the implementation strategies using AIM and IAM respectively.

Results

We observed statistically significant improvements in PrEP penetration and PrEP offer (p < 0.05) and non-significant improvements in fidelity. PrEP penetration increased 6 percent points (p = 0.002), PrEP offer increased nearly 6 percentage points (p = 0.002), and PrEP fidelity increased 4 percentage points (p = 0.202) in intervention vs comparison facilities. Client PrEP knowledge increased 0.45 out of 7 total points (p < 0.001) and PrEP screening increased 13 percentage points (p = 0.001). We observed no significant changes in service time (0.13-min increase; p = 0.249), waiting time (0.03-min decrease; p = 0.796), or client satisfaction (0.04/24 total point decrease; p = 0.849) in intervention vs comparison facilities. HIV testing did not significantly change (7 percentage point decrease, p = 0.305). The implementation strategy bundle was deemed appropriate and acceptable by the providers (appropriateness: 18.5/20; acceptability: 18.5/20). Overall, the implementation strategy bundle was associated with larger increases in implementation outcomes among women receiving a visit other than their first ANC visit, as well as among sites without stockouts of HIV test kits.

Conclusions

A stakeholder-selected implementation strategy bundle that included retraining healthcare workers, fast tracking PrEP clients to reduce waiting time, and PrEP dispensing in MCH improved several implementation outcomes without significantly affecting waiting time or reducing service time.

Contributions to the literature

Evidence is sparse on effective implementation strategies that focus on structural- and provider-level barriers to enhance delivery of integrated care in resource-limited settings.
Stakeholder-selected strategies are hypothesized to have a better fit to local context and potentially be more effective than externally selected strategies.
We tested a package of two stakeholder-selected implementation strategies – retraining health providers, fast tracking PrEP clients in a difference-in-differences study in 8 clinics in Kenya.
The package was associated with significant improvements in PrEP penetration, PrEP offer, PrEP knowledge, and PrEP screening. It was not associated with significant changes in PrEP fidelity, HIV testing, service time, waiting time, or client satisfaction.
The improvement associated with the package was most pronounced among clinics that did not experience substantial stockouts of supplies, suggesting that implementation strategies are not sufficient to overcome gaps in basic resourcing in the presence of critical events.

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

✪ Advancing implementation of single session interventions in schools: a protocol for a qualitative study

Abstract:

Background

Schools are one of the most common settings in which youth seek mental health services, yet existing school-based mental health interventions are often difficult to implement due to time, cost, and staffing limitations. Digital, self-administered Single Session Interventions (SSIs) are evidence-based supports that are intentionally structured to deliver a clinically-meaningful dosage of evidence-based content within one session. Although multiple studies have demonstrated the clinical effectiveness of school-based SSIs, there have been no systemic efforts to understand how SSIs can be practically implemented in schools. The goal of this project is to partner with students, parents, and school staff to identify factors that impact the implementation of SSIs and understand how SSIs can be sustainably integrated as mental health supports into school mental health infrastructure.

Methods

We will conduct focus groups (five groups, total n = 35–45) among community members (i.e., students, parents/caregivers, teachers, school administrators, and school mental health providers) to assess perceived facilitators and barriers to the effective implementation of evidence-based SSIs in schools (Aim 1). We will then work in partnership with community members (n = 10–15) to co-design multi-level implementation strategies (i.e., student-directed, staff-directed, system-directed) for increasing uptake and promoting sustainability of school-based SSIs (Aim 2). We will use inductive coding to thematically analyze qualitative data from group sessions. This study is being conducted within the Lake Washington School District in the Seattle, Washington region.

Discussion

The proposed project will be the first to investigate facilitators and barriers to real-world implementation of SSIs in schools and strategies to improve implementation. Future studies may test the effectiveness of the generated implementation strategies on outcomes such as SSI uptake over time.

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

Authors:

✪ Open Access

Read the full text in the open access Alzheimer's & Dementia: The Journal of the Alzheimer's Association

Abstract:

INTRODUCTION

METHODS

RESULTS

DISCUSSION

Highlights

Authors:

Subscription Required for Full Text Access

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

Authors:

✪ Open Access

Read the full text in the open access journal Frontiers in Health Services

Abstract:

Authors:

✪ Open Access

Read the full text in the open access journal Blood Advances

Abstract:

Authors:

Subscription Required for Full Text Access

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

Authors:

✪ Open Access

Read the full text in the open access journal Global Health Action

Abstract:

Paper context

Authors:

✪ Open Access

Read the full text in the open access journal Journal of Clinical and Translational Science

Abstract:

Authors:

✪ Open Access

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

Abstract:

Background

Methods

Results

Conclusions

Contributions to the literature

Authors:

✪ Open Access

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

Abstract:

Background

Methods

Discussion

Authors:

Subscription Required for Full Text Access

Read the full text in the subscription access journal Journal of General Internal Medicine