Ethics and Science in the Participatory Era: A Vignette-Based Delphi Study

Bromley, Elizabeth; Mikesell, Lisa; Khodyakov, Dmitry

doi:10.1177/1556264617717828

Cited by 6 publications

(7 citation statements)

References 54 publications

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“…They also shared resources to extend their reach, sought to continue relationships over time regardless of the terms, and they considered which supports (e.g., translation) would be needed to advance equity. These activities reflect the ways in which priorities and tactics adopted in participatory approaches may support resilience-building program implementation [ 26 , 27 ].…”

Section: Discussionmentioning

confidence: 99%

How Do Communities Use a Participatory Public Health Approach to Build Resilience? The Los Angeles County Community Disaster Resilience Project

Bromley

Eisenman²,

Magaña

et al. 2017

IJERPH

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Community resilience is a key concept in the National Health Security Strategy that emphasizes development of multi-sector partnerships and equity through community engagement. Here, we describe the advancement of CR principles through community participatory methods in the Los Angeles County Community Disaster Resilience (LACCDR) initiative. LACCDR, an initiative led by the Los Angeles County Department of Public Health with academic partners, randomized 16 community coalitions to implement either an Enhanced Standard Preparedness or Community Resilience approach over 24 months. Facilitated by a public health nurse or community educator, coalitions comprised government agencies, community-focused organizations and community members. We used thematic analysis of data from focus groups (n = 5) and interviews (n = 6 coalition members; n = 16 facilitators) to compare coalitions’ strategies for operationalizing community resilience levers of change (engagement, partnership, self-sufficiency, education). We find that strategies that included bidirectional learning helped coalitions understand and adopt resilience principles. Strategies that operationalized community resilience levers in mutually reinforcing ways (e.g., disseminating information while strengthening partnerships) also secured commitment to resilience principles. We review additional challenges and successes in achieving cross-sector collaboration and engaging at-risk groups in the resilience versus preparedness coalitions. The LACCDR example can inform strategies for uptake and implementation of community resilience and uptake of the resilience concept and methods.

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Section: Discussionmentioning

confidence: 99%

How Do Communities Use a Participatory Public Health Approach to Build Resilience? The Los Angeles County Community Disaster Resilience Project

Bromley

Eisenman²,

Magaña

et al. 2017

IJERPH

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“…To determine the patient-centeredness of the care considerations, we used a 2-step analytic approach developed in previous ExpertLens studies 35,36 (Figure 3). We first used round 3 ratings and RAM to determine if participants in each panel agreed on the importance and acceptability of each care consideration.…”

Section: Methodsmentioning

confidence: 99%

Using an Online, Modified Delphi Approach to Engage Patients and Caregivers in Determining the Patient-Centeredness of Duchenne Muscular Dystrophy Care Considerations

et al. 2019

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Purpose. To determine the patient-centeredness of endocrine and bone health Duchenne muscular dystrophy (DMD) care considerations using the RAND/PPMD Patient-Centeredness Method (RPM), which is a novel, online, modified-Delphi approach to engaging patients and caregivers in clinical guideline development. Methods. We solicited input on the patient-centeredness of care considerations from 28 individuals with DMD and 94 caregivers, randomly assigned to 1 of 2 mixed panels. During a 3-round online modified-Delphi process, participants rated the importance and acceptability of 19 DMD care considerations (round 1), reviewed and discussed the initial results (round 2), and revised their original ratings (round 3). Patient-centeredness was operationalized as importance and acceptability of recommendations. We considered a care consideration to be patient-centered if both panels deemed it important and acceptable. Results. Ninety-five panelists (78%) participated in this study. Of these, 88 (93%) participated in round 1, 74 (78%) in round 2, and 56 (59%) in round 3. Panelists deemed 12 care considerations to be patient-centered: 3 weight management, 3 bone health, 4 vertical growth, and 2 puberty recommendations. Seven care considerations did not meet patient-centeredness criteria. Common reasons were lack of evidence specific to DMD and concerns about insurance coverage, access to treatment, and patient safety. Conclusions. Using the RPM, Duchenne families considered most care considerations to be patient-centered. Besides being clinically appropriate, these considerations are likely to be consistent with the preferences, needs, and values of Duchenne families. While all relevant care considerations should be discussed during patient-provider encounters, those that did not meet patient-centeredness criteria in particular should be carefully considered as part of joint decision making between Duchenne families and their providers. Study Registration: HSRProj 20163126.

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“…We used a similar sampling approach in a previous NIH-funded project on research ethics. These two approaches and the steps taken to produce the online survey samples for this study are described below (Khodyakov et al, 2016;Bromley et al, 2017).…”

Section: Sample Selectionmentioning

confidence: 99%

“…An alternative strategy to generate a representative sample of PIs was implemented using the NIH RePORT, which we used successfully in a previous NIH-funded project on research ethics (Khodyakov et al, 2016;Bromley et al, 2017). RePORT is a comprehensive, searchable database of NIH-funded research projects that includes the name of the project's PI, the title of the project, the PI's organization, the NIH funding center, and the email address of the PI.…”

Section: Principal Investigator Samplementioning

confidence: 99%

Profile of Institutional Review Board Characteristics Prior to the 2019 Implementation of the Revised Common Rule

Berry¹,

Khodyakov²,

Grant³

et al. 2019

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Ethics and Science in the Participatory Era: A Vignette-Based Delphi Study

Cited by 6 publications

References 54 publications

How Do Communities Use a Participatory Public Health Approach to Build Resilience? The Los Angeles County Community Disaster Resilience Project

How Do Communities Use a Participatory Public Health Approach to Build Resilience? The Los Angeles County Community Disaster Resilience Project

Using an Online, Modified Delphi Approach to Engage Patients and Caregivers in Determining the Patient-Centeredness of Duchenne Muscular Dystrophy Care Considerations

Profile of Institutional Review Board Characteristics Prior to the 2019 Implementation of the Revised Common Rule

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