An electronic health record-based strategy to recruit for a Patient Advisory Council for Research: Implications for inclusion

Bougrab, Nassira; Li, Dadong; Trachtman, Howard; Sherman, Scott E.; Thornton, Rachel L. J.; Langford, Aisha T.

doi:10.1017/cts.2019.433

Cited by 6 publications

(4 citation statements)

References 17 publications

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“…An alternative method might be a more systematic strategy of identifying and recruiting to specific criteria that represent the population of study, then targeting list servers of disease-focused organizations or registries. Additional strategies include using existing networks, community and clinic outreach, social media and using the EHR to identify a representative pool for invitation (Bougrab et al, 2020). This might promote a more representative Advisory Board; however, personal engagement in recruiting members might be compromised and ultimately lead to less group cohesion and shared purpose.…”

Section: Discussionmentioning

confidence: 99%

Meaningful Engagement of Patient Advisors in Research: Towards Mutually Beneficial Relationships

Young

Miyamoto²,

Henderson

et al. 2020

West J Nurs Res

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Patient engagement in research improves trustworthiness of the research findings, increases relevance, and ensures designs include the most meaningful outcomes for patients living with targeted health conditions. The Patient Centered Outcomes Research Institute (PCORI) requires engagement of patient stakeholders. There is limited description of both the context and the processes used to engage patients effectively. This paper discusses engagement activities, roles and responsibilities, value of a Patient Advisory Board (PAB), and lessons learned. Data include program notes, research team reflections, PCORI reporting, and an advisor survey. Facilitators of meaningful engagement included creating a learning community, co-defining clear roles, reimbursing advisors, establishing clear avenues for communication, and welcoming unique contributions. Lessons learned were the value of time, the importance of building trust, and the benefits of diverse perspectives. The approach to meaningful engagement of patient advisors in research has the potential to enhance the relevance and usefulness of research for improving lives.

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Section: Discussionmentioning

confidence: 99%

Meaningful Engagement of Patient Advisors in Research: Towards Mutually Beneficial Relationships

Young

Miyamoto²,

Henderson

et al. 2020

West J Nurs Res

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“…Despite the known weaknesses in PPRMs with regards to user demographics, a benefit of PPRM uncovered by study team members was the ability to target specific subgroups in recruitment. 28 For example, a study team can request to only send PPRMs to patients in demographic groups that are traditionally underrepresented in research, rather than to any person that meets the computable phenotype criteria. Similarly, this can be modified throughout the recruitment period, and, therefore, adaptive to the study's recruitment progress and goals.…”

Section: Discussionmentioning

confidence: 99%

Describing current use, barriers, and facilitators of patient portal messaging for research recruitment: Perspectives from study teams and patients at one institution

Miller¹,

Lindo²,

Fish³

et al. 2023

J. Clin. Trans. Sci.

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“…To ensure an equitable selection process, patients with at least 1 active medical condition were identified and recruited via electronic health record, and upon consent, were asked to participate in at least 6 meetings per year to review research projects. 30 At the time of our focus group, PACR had 25 total members. Participants ranged from ages 18-78, with most in older age strata.…”

Section: Patient Advisory Group (General)mentioning

confidence: 99%

NSTEMI Decide: Development of a Decision Aid for Older Adults with Non ST Elevation Myocardial Infarction

Summapund

Sibley

Iqbal

et al. 2021

Preprint

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Background: Many patients hospitalized with non-ST elevation myocardial infarction (NSTEMI) are older adults (age 75 and older), in whom invasive coronary angiography confers potential benefits but also higher risks than the general population. Our goal was to therefore develop a patient decision aid (PtDA) to assist with shared decision making between cardiologists and older adults with this condition. Methods: We followed International Patient Decision Aid Standards to develop the NSTEMI Decide PtDA. The initial prototype was based on structured interviews from 20 patients and 20 clinicians. Risks and benefits of invasive coronary angiography were derived from the available literature in older adults, with an emphasis on findings from randomized trials. The PtDA was then revised through an iterative, user-centered design approach with rapid prototyping using input from both clinician and patients to meet the needs of both stakeholders. Results: The PtDA went through 8 iterations. The final decision aid was 11 pages and included background information (6 pages), explanation of benefits and risks (4 pages), and a summary (1 page). Large font (≥26 point) was used to accommodate visual difficulties. Language was tailored to an 8th grade reading level. Based on the best available literature, we included benefits of invasive coronary angiography (recurrent myocardial infarction, repeat revascularization) and risks (stroke, bleeding, acute kidney injury). The final PtDA was converted to a mobile health application to increase usability on portable digital devices in the clinical setting. Conclusions: We developed the first PtDA tailored to older adults hospitalized with NSTEMI. This PtDA will be prospectively tested to evaluate dimensions including feasibility of use, satisfaction with care, medical knowledge, and decisional conflict.

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An electronic health record-based strategy to recruit for a Patient Advisory Council for Research: Implications for inclusion

Cited by 6 publications

References 17 publications

Meaningful Engagement of Patient Advisors in Research: Towards Mutually Beneficial Relationships

Meaningful Engagement of Patient Advisors in Research: Towards Mutually Beneficial Relationships

Describing current use, barriers, and facilitators of patient portal messaging for research recruitment: Perspectives from study teams and patients at one institution

NSTEMI Decide: Development of a Decision Aid for Older Adults with Non ST Elevation Myocardial Infarction

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