Stakeholder engagement in patient-centered outcomes research: high-touch or high-tech?

Lavallee, Danielle C.; Wicks, Paul; Cristancho, R. Alfonso; Mullins, C. Daniel

doi:10.1586/14737167.2014.901890

Cited by 32 publications

(23 citation statements)

References 37 publications

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“…Preliminary work [31,41] has shown the potential in cataloging and archiving previous patients’ personal histories, experiences, challenges, and solutions in a variety of different formats (e.g. written or video biographies), allowing current patients to obtain this information from a trusted source with minimal effort.…”

Section: Design Opportunitiesmentioning

confidence: 99%

Closing the Gap

Pollack

Backonja

Miller

et al. 2016

Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems

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Patients going home after a hospitalization face many challenges. This transition period exposes patients to unnecessary risks related to inadequate preparation prior to leaving the hospital, potentially leading to errors and patient harm. Although patients engaging in self-management have better health outcomes and increased self-efficacy, little is known about the processes in place to support and develop these skills for patients leaving the hospital. Through qualitative interviews and observations of 28 patients during and after their hospitalizations, we explore the challenges they face transitioning from hospital care to self-management. We identify three key elements in this process: knowledge, resources, and self-efficacy. We describe how both system and individual factors contribute to breakdowns leading to ineffective patient management. This work expands our understanding of the unique challenges faced by patients during this difficult transition and uncovers important design opportunities for supporting crucial yet unmet patient needs.

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Section: Design Opportunitiesmentioning

confidence: 99%

Closing the Gap

Pollack

Backonja

Miller

et al. 2016

Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems

View full text Add to dashboard Cite

show abstract

“…Patient stakeholders may not always be familiar with or comfortable in using traditional channels of communication in large organizations. As noted by Lavallee et al (15), the increasing availability of mobile technology, social media, internet venues, and electronic devices has multiplied the communication options for many, but carries with it the risk of increasing the quantity of participants while reducing the depth of involvement. Often, the use of focus groups or small informal meetings can be used to increase the quality of communication or to elicit participation from those who might otherwise be reticent about expressing their views.…”

Section: Identify Stakeholdersmentioning

confidence: 99%

Project Stakeholder Management in the Clinical Research Environment: How to Do it Right

et al. 2015

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This review introduces a conceptual framework for understanding stakeholder management (ShM) in the clinical and community-based research environment. In recent years, an evolution in practice has occurred in many applicants for public and non-governmental funding of public health research in hospital settings. Community health research projects are inherently complex, have sought to involve patients and other stakeholders in the center of the research process. Substantial evidence has now been provided that stakeholder involvement is essential for management effectiveness in clinical research. Feedback from stakeholders has critical value for research managers inasmuch as it alerts them to the social, environmental, and ethical implications of research activities. Additionally, those who are directly affected by program development and clinical research, the patients, their families, and others, almost universally have a strong motivation to be involved in the planning and execution of new program changes. The current overview introduces a conceptual framework for ShM in the clinical research environment and offers practical suggestions for fostering meaningful stakeholder engagement. The fifth edition of PMBOK® of the Project Management Institute, has served as basis for many of the suggested guidelines that are put forward in this article.

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“…Additionally, large, nationally representative studies of older adults’ perspectives could be technology-based, but doing so may be challenging given that older adults may be underrepresented in current patient-centered communities (such as PatientsLikeMe). 58 In conclusion, older adults with depression provided us with perspectives that can make the next generation of clinical trials more patient-centered and, ultimately, more impactful.…”

Section: Discussionmentioning

confidence: 95%

Older Adults' Perspectives on Clinical Research: A Focus Group and Survey Study

Lenze

Ramsey

Brown

et al. 2016

The American Journal of Geriatric Psychiatry

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Objectives Clinical trials can benefit from the patient perspectives to inform their design, such as choice of outcome measures. We engaged older adults in focus groups and surveys to get their perspective regarding needs in clinical research. The goal was to inform the development of a new clinical trial of medication strategies for treatment-resistant depression in older adults. Methods Older adults with depression participated in focus groups and a subsequent survey in St. Louis and New York. They were queried regarding research design features including outcomes, clinical management, mobile technology and iPad-administered assessments, the collection of DNA, and the receipt of their personal results. Results Patients told us: (1) psychological well-being and symptomatic remission are outcomes that matter to them; (2) it is important to measure not only benefits but risks (such as risk of falling) of medications; (3) for pragmatic trials in clinical settings, the research team should provide support to clinicians to ensure that medications are properly prescribed; (4) technology-based assessments are acceptable but there were concerns about data security and burden; (5) DNA testing is very important if it could improve precision care; (6) they want to receive aggregate findings and their own personal results at the end of the study. Conclusions Patients gave useful and wide-ranging guidance regarding clinical and comparative effectiveness research in older adults. We discuss these findings with the goal of making the next generation of geriatric studies more impactful and patient-centered.

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Stakeholder engagement in patient-centered outcomes research: high-touch or high-tech?

Cited by 32 publications

References 37 publications

Closing the Gap

Closing the Gap

Project Stakeholder Management in the Clinical Research Environment: How to Do it Right

Older Adults' Perspectives on Clinical Research: A Focus Group and Survey Study

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