Challenges of Patient Engagement in an HIV Clinical Research Program: A Qualitative Analysis of Stakeholder Accounts

Patient engagement (PE) promotes collaboration between stakeholders (researchers, patients, clinicians, etc). It often faces challenges due to tensions between its ethical/political and scientific underpinnings. This article explores how stakeholders applied the guiding principles of a PE project (“co-build,” “support and mutual respect,” and “inclusiveness”) for an HIV clinical research program initiated in January 2016. Three researchers/clinicians, a PE agent, and 2 patients held 3 meetings (June-October 2018) to discuss challenges faced and how these impacted their approach to PE. Regular stakeholder discussions about PE in clinical research could be documented and help guide PE to better meet stakeholder needs.

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Use of Game Theory to model patient engagement after surgery: a qualitative analysis

Journal of Surgical Research ◽

10.1016/j.jss.2017.07.039 ◽

2018 ◽

Vol 221 ◽

pp. 69-76 ◽

Cited By ~ 1

Author(s):

Stephen A. Castellanos ◽

Gerardo Buentello ◽

Diana Gutierrez-Meza ◽

Angela Forgues ◽

Lisa Haubert ◽

...

Keyword(s):

Game Theory ◽

Qualitative Analysis ◽

Patient Engagement

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Clinical Research Program

JAMA ◽

10.1001/jama.2010.1966 ◽

2011 ◽

Vol 305 (4) ◽

pp. 348

Author(s):

Bridget M. Kuehn

Keyword(s):

Clinical Research ◽

Research Program

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Towards a Decolonizing Framework for Pre-Departure Education

Comparative and International Education ◽

10.5206/cie-eci.v49i1.13434 ◽

2020 ◽

Vol 49 (1) ◽

pp. 1-15

Author(s):

Robert Mizzi

Keyword(s):

Teaching Practice ◽

Indigenous Education ◽

Adult Educators ◽

Mutual Respect ◽

Indigenous Groups ◽

Guiding Principles ◽

Ruling Relations ◽

Organizational Requirements

In light of the increasing mobility of people for study and employment purposes and the fact that Indigenous groups continue to be marginalized across the globe, this article introduces a tentative framework for adult educators or facilitators to decolonize their pre-departure orientations for workers or learners who plan to live in a different country. Drawing on Indigenous education principles, the framework consists of three guiding principles that intersect with one another: (1) Indigenizing teaching practice, (2) deconstructing ruling relations, and (3) promoting reflexivity, mutual respect, and understanding. Challenges to implementing this framework include organizational requirements to maintain a Western dominance in their pre-departure programs.

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USE OF INTERMITTENT REINFORCEMENT IN A CLINICAL-RESEARCH PROGRAM FOR THE TREATMENT OF ENURESIS NOCTURNA

Journal of Pediatric Psychology ◽

10.1093/jpepsy/1.1.24 ◽

1976 ◽

Vol 1 (1) ◽

pp. 24-27 ◽

Cited By ~ 10

Author(s):

William W. Finley ◽

Richard A. Wansley

Keyword(s):

Clinical Research ◽

Research Program ◽

Enuresis Nocturna ◽

Intermittent Reinforcement

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OA1-1 Unanticipated participant benefits in HIV cure clinical research: a qualitative analysis

Journal of Virus Eradication ◽

10.1016/s2055-6640(20)31005-0 ◽

2016 ◽

Vol 2 ◽

pp. 1

Author(s):

A. Gilbertson ◽

S. Rennie ◽

E. Kelly ◽

J. Kuruc ◽

J. Tucker

Keyword(s):

Qualitative Analysis ◽

Clinical Research ◽

Hiv Cure

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Critical Aspects of a Sustainable Clinical Research Program in the Community-Based Oncology Practice

American Society of Clinical Oncology Educational Book ◽

10.1200/edbk_238485 ◽

2019 ◽

pp. 176-184 ◽

Cited By ~ 2

Author(s):

Jennifer L. Ersek ◽

Stephanie L. Graff ◽

Francis P. Arena ◽

Neelima Denduluri ◽

Edward S. Kim

Keyword(s):

Clinical Research ◽

Patient Care ◽

Health Care Providers ◽

Research Program ◽

Improve Patient Care ◽

Care Providers ◽

Community Based ◽

Technological Infrastructure ◽

Community Based Research ◽

Research Programs

Increasing enrollment into clinical trials is a top priority across the field of oncology. Because the vast majority of those afflicted with cancer receive their care in the community, creating strong clinical research programs in the community-based setting is important. This article comprehensively outlines the most important elements of creating and sustaining a successful community-based research program. Establishing a clear mission and defining the scope of the research program in collaboration with key physicians and administrative leadership are critical to success. Standard operating procedures should detail operational processes. Ensuring sound financial planning and protected physician time are crucial for a healthy program. Providing mentorship opportunities to investigators and other team members will provide necessary guidance for junior investigators and long-term program stability. Prioritizing provider and patient volunteer engagement through education and awareness will potentially improve enrollment and research ownership. Incorporating administrative and clinical research staff and health care providers, including physicians, advanced practice providers, and pharmacists, will result in a multidisciplinary and unified approach and may also promote research as a routine part of patient care. Regular safety and scientific meetings will reduce regulatory complications and, most importantly, improve patient care. Other keys to a successful program include establishing a diverse trial portfolio, collaboration between different institutions, and ensuring appropriate technological infrastructure. Serial programmatic review provides opportunities to refine suboptimal practices and recognize successful strategies. Community-based research programs are critical to improve access to optimal cancer care. Implementation of successful programs is possible with a collaborative and multidisciplinary approach.

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