A New Taxonomy for Stakeholder Engagement in Patient-Centered Outcomes Research

Concannon, Thomas W.; Meißner, Paul; Grunbaum, Jo Anne; McElwee, Newell E.; Guise, Jeanne Marie; Santa, John; Conway, Patrick H.; Daudelin, Denise H.; Morrato, Elaine H.; Leslie, Laurel K.

doi:10.1007/s11606-012-2037-1

Cited by 390 publications

(367 citation statements)

References 33 publications

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“…Because of this lack of consensus, individual efforts to promote or study SDM should involve EPs early, at the Evidence Prioritization stage of research, to further delineate these motivations in the context of any specific SDM scenario. 19 In theory, physicians should partake in SDM out of respect for patient autonomy. In reality, physicians balance patient autonomy, stewardship of resources, and fear of uncertainty with every medical decision.…”

Section: Discussionmentioning

confidence: 99%

“…Additionally, the early involvement of stakeholders "helps to ensure that the research reflects the various needs of all diverse users." 18,19 Although two surveys about EPs' views on SDM were recently published, 15,20 neither study examined why EPs engage in SDM or explored factors that may encourage physicians' use of SDM, such as attitudes, beliefs, or local practice norms. Because factors that may contribute to motivation have not previously been studied in an exploratory manner, qualitative research provides the necessary foundation for further investigation.…”

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confidence: 99%

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The Physician‐as‐Stakeholder: An Exploratory Qualitative Analysis of Physicians’ Motivations for Using Shared Decision Making in the Emergency Department

Schoenfeld

Goff

Elia

et al. 2016

Academic Emergency Medicine

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Background: Shared decision making (SDM) is increasingly recognized as an important facet of patientcentered care. Despite growing interest in SDM in the emergency department (ED), little is known about emergency physicians' (EPs') motivations for using SDM. Understanding current patterns of SDM use and EP's rationale for using SDM is essential for the development of interventions to increase use.

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Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

The Physician‐as‐Stakeholder: An Exploratory Qualitative Analysis of Physicians’ Motivations for Using Shared Decision Making in the Emergency Department

Schoenfeld

Goff

Elia

et al. 2016

Academic Emergency Medicine

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“…1 Patients are increasingly interested in and calling for a more proactive role as partners in clinical research. [2][3][4] Engaging patients and other relevant healthcare stakeholders (e.g., patients, caregivers such as parents of children with rare diseases, advocacy organizations, and clinicians) 5 in the planning and conduct of research (as distinct from increased patient involvement in clinical care 6 ) is a promising approach for addressing evidence gaps for the management of rare diseases. Engagement may promote research that evaluates health outcomes that are both relevant to patients with rare diseases 7 and useful for decision making.…”

Section: Introductionmentioning

confidence: 99%

A Systematic Review of Approaches for Engaging Patients for Research on Rare Diseases

et al. 2014

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BACKGROUND: Patients with rare diseases have limited access to useful information to guide treatment decisions. Engagement of patients and other stakeholders in clinical research may help to ensure that research efforts in rare diseases address relevant clinical questions and patient-centered health outcomes. Rare disease organizations may provide an effective means to facilitate patient engagement in research. However, the effectiveness of patient-engagement approaches, particularly for the study of rare diseases, has not been well studied. OBJECTIVES: To synthesize evidence about engagement of patients and other stakeholders in research on rare diseases, including the role of rare disease organizations in facilitating patient-centered research. METHODS/RESEARCH DESIGN: A systematic review and gray literature search were guided by a technical expert panel composed of patient representatives, clinicians, and researchers. English-language studies that engaged patients or other stakeholders in research on rare diseases or evaluated engagement were included. Studies were assessed on how well key research questions were answered, based on the level of detail describing engagement activities and whether outcomes from engagement were assessed. RESULTS: Thirty-five studies were included, although many reported minimal information on engagement. Patients and other stakeholders were most commonly engaged to identify patient-centered research agendas, to select which study outcomes were important to patients, to provide input on study design, and to identify strategies for increasing enrollment in trials. Rare disease organizations mainly helped provide access to patients and communicated research opportunities and findings. They also helped promote collaborative networks and provided financial support for research infrastructures. Although authors reported benefits of engagement and identified changes to their research processes, no empirical assessments of engagement practices and their effectiveness were found. CONCLUSIONS: Researchers studying rare diseases can obtain patient input regarding which research questions and health outcomes to study; however, the most effective approaches to engagement have not been well defined.

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“…2 Increasingly, PBR networks (PBRNs) are recognized vehicles for building the evidence base of primary care by conducting research in community-based settings. 3 Patient-centered outcomes research 9,10 is another recent emphasis that prioritizes community engagement and provides an avenue for primary care researchers to bridge the chasm between recommended care and improved health. 3 Use of rigorous research methods ensures the findings will be relevant to the communities served by PBRNs, a diverse mix of practices collaborating to increase research productivity and improve the external validity of findings.…”

mentioning

confidence: 99%

Use of Community Engagement Strategies to Increase Research Participation in Practice-based Research Networks (PBRNs)

Spears

Tsoh

Potter

et al. 2014

The Journal of the American Board of Family Medicine

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Purpose: Practice-based research networks (PBRNs) are increasingly encouraged to use community engagement approaches. The extent to which PBRNs engage clinic and community partners in strategies to recruit and retain participants from their local communities (specifically racial/ethnic communities) is the focus of this study.Methods: The design was a cross-sectional survey of PBRN directors in the United States. Survey respondents indicated whether their research network planned for, implemented, and has capacity for activities that engage clinic and community partners in 7 recommended strategies organized into study phases, called the cycle of trust. The objectives of the national survey were to (1) describe the extent to which PBRNs across the United States routinely implement the strategies recommended for recruiting diverse patient groups and (2) identify factors associated with implementing the recommended strategies.Results: The survey response rate was 63%. Activities that build trust often are used more with clinic partners than with community partners. PBRNs that adopt engagement strategies when working with clinic and community partners have less difficulty in recruiting diverse populations. Multivariate analysis showed that the targeting racial/ethnic communities for study recruitment, Clinical and Translational Science Award affiliation, and planning to use community engagement strategies were independent correlates of PBRN implementation of the recommended strategies. In recent years, policymakers and researchers have expressed concern that the medical research system produces new knowledge that may not be incorporated effectively into clinical practice.1,2 Acquisition of much of the evidence base of health careThis article was externally peer reviewed.

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A New Taxonomy for Stakeholder Engagement in Patient-Centered Outcomes Research

Cited by 390 publications

References 33 publications

The Physician‐as‐Stakeholder: An Exploratory Qualitative Analysis of Physicians’ Motivations for Using Shared Decision Making in the Emergency Department

The Physician‐as‐Stakeholder: An Exploratory Qualitative Analysis of Physicians’ Motivations for Using Shared Decision Making in the Emergency Department

A Systematic Review of Approaches for Engaging Patients for Research on Rare Diseases

Use of Community Engagement Strategies to Increase Research Participation in Practice-based Research Networks (PBRNs)

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