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✪ Community-Engaged Research in HIV Implementation Science: Characterizing Academic and Community Partnerships in the “Ending the HIV Epidemic” Supplement Awards

Authors:

Reva Datar, Sheree Schwartz, Wilson Gomez, David A Katz, Gustavo Morales, Debbie Humphries, April Pettit, Audrey Harkness, Pedro Alonso Serrano, Robin Gaines Lanzi, Jessica M Sales, Christopher Archiopoli, Stefan Baral, Laura K Beres

University of Washington affiliated authors are displayed in bold.

✪ Open Access

Published: April 2025

Read the full text open access in the journal JAIDS: Journal of Acquired Immune Deficiency Syndrome

✪ Community partner coauthorship for increased implementation science impact: Strengthening capacity and engagement

Authors:

Rebekka M. Lee, Cristina Huebner Torres, James G. Daly, Annette Thomas, Peggy A. Hannon, Sonja Likumahuwa-Ackman and Karen M. Emmons

University of Washington affiliated authors are displayed in bold.

✪ Open Access

Published: September 2024

Read the full text open access in the journal Hepatology Communications

Abstract:

Engaging diverse partners in each phase of the research process is the gold standard of community-engaged research and adds value to the impact of implementation science. However, partner engagement in dissemination, particularly meaningful involvement in developing peer-reviewed manuscripts, is lacking. The Implementation Science Centers in Cancer Control are using the Translational Science Benefits Model to demonstrate the impact of our work beyond traditional metrics, including building capacity and promoting community engagement. This paper presents a case example of one center that has developed a policy for including community partners as coauthors. Standard practices are used to foster clear communications and bidirectional collaboration. Of published papers focused on center infrastructure and implementation research pilots, 92% have community partner coauthors. This includes 21 individuals in roles ranging from physician assistant to medical director to quality manager. Through this intentional experience of co-creation, community partners have strengthened implementation science expertise. Community coauthors have also ensured that data interpretation and dissemination reflect real-world practice environments and offer sustainable strategies for rapid translation to practice improvements. Funders, academic journals, and researchers all have important roles to play in supporting community coauthors as critical thought partners who can help to narrow the gap between research and practice.

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

✪ “A problem shared is a problem solved:” integrating human-centered design and implementation science to optimize lay counselor supervision in Western Kenya

Authors:

Noah S. Triplett, Anne Mbwayo, Sharon Kiche, Enoch Sackey, Rashed AlRasheed, Daisy Anyango Okoth, Omariba Anne Nyaboke, Cyrilla Amanya & Shannon Dorsey

University of Washington affiliated authors are displayed in bold.

✪ Open Access

Published: May 2024

Read the full text in the open access journal Social Science and Medicine - Mental Health

Abstract:

Implementation science and human-centered design (HCD) offer useful frameworks and methods for considering and designing for individuals' needs and preferences when implementing new interventions or technologies in global health. When used in tandem, the two approaches may blend creative and partnered research methods with a focus on the factors necessary to design, implement, and sustain interventions. However, research is needed that describes the process of blending these two approaches and explores the experiences of community partners. This study builds from a stepped-wedge cluster-randomized trial in Western Kenya, wherein teachers and community health volunteers have been trained to provide trauma-focused cognitive behavioral therapy (TF-CBT). Mobile phones emerged as a tool to supervise lay counselors from afar; however, their use was characterized by unique challenges. Informed by human-centered design and implementation science, we first engaged lay counselors (n = 24) and supervisors (n = 3) in individual semi-structured interviews then hosted an in-person participatory workshop to “co-design” solutions to optimize the use of mobile phone supervision. Lay counselors participated in focus group discussions regarding their experiences in the workshop. Focus group transcripts were analyzed using thematic analysis. We describe our approach as well as focus group discussion results. Counselors felt the workshop was a valuable experience to learn new strategies from their colleagues, and they enjoyed the “collaborative spirit” that emerged as they worked together. Counselors felt that varying small and large group discussions fostered participation by creating opportunities for more people to engage and share their thoughts. Counselors suggested the approach be improved by providing more tangible materials (e.g., hand-outs) and more closely following a schedule of activities. It is important to also center stakeholders’ experiences as partners in the research process. Though counselors largely expressed positive sentiments, they also shared valuable suggestions for how to improve participatory research practices in the future.

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

✪ Enhanced or hindered research benefits? A realist review of community engagement and participatory research practices for non-communicable disease prevention in low- and middle-income countries

Authors:

Sonja Klingberg, Bipin Adhikari, Catherine E Draper, Edna Bosire, Deborah Nyirenda, Priscilla Tiigah, & Ferdinand C Mukumbang

University of Washington affiliated authors are displayed in bold.

✪ Open Access

Published: February 2024

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

Abstract:

Introduction

Community engagement and participatory research are widely used and considered important for ethical health research and interventions. Based on calls to unpack their complexity and observed biases in their favour, we conducted a realist review with a focus on non-communicable disease prevention. The aim was to generate an understanding of how and why engagement or participatory practices enhance or hinder the benefits of non-communicable disease research and interventions in low- and middle-income countries.

Methods

We retroductively formulated theories based on existing literature and realist interviews. After initial searches, preliminary theories and a search strategy were developed. We searched three databases and screened records with a focus on theoretical and empirical relevance. Insights about contexts, strategies, mechanisms and outcomes were extracted and synthesised into six theories. Five realist interviews were conducted to complement literature-based theorising. The final synthesis included 17 quality-appraised articles describing 15 studies.

Results

We developed six theories explaining how community engagement or participatory research practices either enhance or hinder the benefits of non-communicable disease research or interventions. Benefit-enhancing mechanisms include community members’ agency being realised, a shared understanding of the benefits of health promotion, communities feeling empowered, and community members feeling solidarity and unity. Benefit-hindering mechanisms include community members’ agency remaining unrealised and participation being driven by financial motives or reputational expectations

Conclusion

Our review challenges assumptions about community engagement and participatory research being solely beneficial in the context of non-communicable disease prevention in low- and middle-income countries. We present both helpful and harmful pathways through which health and research outcomes are affected. Our practical recommendations relate to maximising benefits and minimising harm by addressing institutional inflexibility and researcher capabilities, managing expectations on research, promoting solidarity in solving public health challenges and sharing decision-making power.

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

Realist evaluation in times of decolonising global health

Authors:

Dimitri Renmans, Nandini Sarkar, Sara Van Belle, Clara Affun-Adegbulu, Bruno Marchal, & Ferdinand C. Mukumbang

University of Washington affiliated authors are displayed in bold.

Subscription Required for Full Text Access

Published: June 2022

Read the full text in the subscription access journal, The International Journal of Health Planning and Management

✪ Measuring fidelity, feasibility, costs: an implementation evaluation of a cluster-controlled trial of group antenatal care in rural Nepal

Authors:

Alex Harsha Bangura, Isha Nirola, Poshan Thapa, David Citrin, Bishal Belbase, Bhawana Bogati, Nirmala B.K., Sonu Khadka, Lal Kunwar, Scott Halliday, Nandini Choudhury, Ryan Schwarz, Mukesh Adhikari, S. P. Kalaunee, Sharon Rising, Duncan Maru & Sheela Maru

University of Washington affiliated authors are displayed in bold.

✪ Open Access

Published: January 2020

Read the full text in the open access journal Reproductive Health

Abstract:

Background

Access to high-quality antenatal care services has been shown to be beneficial for maternal and child health. In 2016, the WHO published evidence-based recommendations for antenatal care that aim to improve utilization, quality of care, and the patient experience. Prior research in Nepal has shown that a lack of social support, birth planning, and resources are barriers to accessing services in rural communities. The success of CenteringPregnancy and participatory action women’s groups suggests that group care models may both improve access to care and the quality of care delivered through women’s empowerment and the creation of social networks. We present a group antenatal care model in rural Nepal, designed and implemented by the healthcare delivery organization Nyaya Health Nepal, as well as an assessment of implementation outcomes.

Methods

The study was conducted at Bayalata Hospital in Achham, Nepal, via a public private partnership between the Nepali non-profit, Nyaya Health Nepal, and the Ministry of Health and Population, with financial and technical assistance from the American non-profit, Possible. We implemented group antenatal care as a prospective non-randomized cluster-controlled, type I hybrid effectiveness-implementation study in six village clusters. The implementation approach allows for iterative improvement in design, making changes to improve the quality of the intervention. Assessments of implementation process and model fidelity were undertaken using a mobile checklist completed by nurse supervisors, and observation forms completed by program leadership. We evaluated data quarterly using descriptive statistics to identify trends. Qualitative interviews and team communications were analyzed through immersion crystallization to identify major themes that evolved during the implementation process.

Results

A total of 141 group antenatal sessions were run during the study period. This paper reports on implementation results, whereas we analyze and present patient-level effectiveness outcomes in a complementary paper in this journal. There was high process fidelity to the model, with 85.7% (95% CI 77.1–91.5%) of visits completing all process elements, and high content fidelity, with all village clusters meeting the minimum target frequency for 80% of topics. The annual per capita cost for group antenatal care was 0.50 USD. Qualitative analysis revealed the compromise of stable gestation-matched composition of the group members in order to make the intervention feasible. Major adaptations were made in training, documentation, feedback and logistics.

Conclusion

Group antenatal care provided in collaboration with local government clinics has the potential to provide accessible and high quality antenatal care to women in rural Nepal. The intervention is a feasible and affordable alternative to individual antenatal care. Our experience has shown that adaptation from prior models was important for the program to be successful in the local context within the national healthcare system.

Trial registration

ClinicalTrials.gov Identifier: NCT02330887, registered 01/05/2015, retroactively registered.

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

✪ Capturing the patient voice: implementing patient-reported outcomes across the health system

Authors:

Elizabeth Austin, Cynthia LeRouge, Andrea L. Hartzler, Courtney Segal, & Danielle C. Lavallee

University of Washington affiliated authors are displayed in bold.

✪ Open Access

Published: October 2019

Read the full text provided with open access, by the hybrid subscription journal Quality of Life Research

Abstract:

Purpose

Supporting the capture and use of patient-reported outcomes (PROs) at the point-of-care enriches information about important clinical and quality of life outcomes. Yet the ability to scale PROs across healthcare systems has been limited by knowledge gaps around how to manage the diversity of PRO uses and leverage health information technology. In this study, we report learnings and practice insights from UW Medicine’s practice transformation efforts to incorporate patient voice into multiple areas of care.

Methods

Using a participatory, action research approach, we engaged with UW Medicine clinical and administrative stakeholders experienced with PRO implementation to inventory PRO implementations across the health system, characterize common clinical uses for PROs, and develop recommendations for system-wide governance and implementation of PROs.

Results

We identified a wide breadth of PRO implementations (n = 14) in practice and found that nearly half (47%) of employed PRO measures captured shared clinical domains (e.g., depression). We developed three vignettes (use cases) that illustrate how users interact with PROs, characterize common ways PRO implementations support clinical care across the health system (1) Preventive care, (2) Chronic/Specialty care, and (3) Surgical/Interventional care), and elucidate opportunities to enhance efficient PRO implementations through system-level standards and governance.

Conclusions

Practice transformation efforts increasingly require integration of the patient voice into clinical care, often through the use of PROs. Learnings from our work highlight the importance of proactively considering how PROs will be used across the layers of healthcare organizations to optimize the design and governance of PROs.

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