The Experiences of Persons Living with Dementia Planning for a Dementia Research Meeting. Lessons Learned From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers.

Frank L, Shubeck E, Schicker M, Webb T, Maslow K, Gitlin L, Hummel CH, Kaplan EK, LeBlanc B, Marquez M, Nicholson BP, O’Brien G, Phillips L, Van Buren B, Epstein-Lubow G.

OBJECTIVE:

A stakeholder group for persons living with dementia (PLWD) was convened to support the work of a major US dementia research meeting. The objectives of this examination are to present the steps used to implement the Group and guidance for both PLWD and researchers for partnering on research conference planning and participation.

METHODS:

PLWD met monthly to provide input into the agenda for the 2017 Research Summit on Dementia Care and some Group members also presented at the Summit. Following the Summit, the Group reviewed their contributions and completed an evaluation of the Group process, identifying best practices to support future efforts.

RESULTS:

Group members were initially unsure about participating due to concerns about ability to contribute and concerns about disease progression. Members reported that participation was a positive experience, however, identifying Group-led governance and attention to Group work process as important contributors. In addition to giving input to the Summit and having the opportunity to interact with researchers, sharing personal experiences with each other was part of the value of the Group to members. Careful Group selection and attention to governance were among the Best Practices members.

CONCLUSION:

Despite initial uncertainty among members about participating as a Stakeholder Group to inform a national research meeting, members developed a successful process for governance, convening, and providing input to a major national research meeting. Group’s self-evaluation yielded specific strategies likely to be useful in formation and implementation of future partnerships between researchers and persons living with dementia.

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Contributions of Persons Living With Dementia to Scientific Research Meetings. Results From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers.

Frank L, Shubeck E, Schicker M, Webb T, Maslow K, Gitlin L, Hummel CH, Kaplan EK, LeBlanc B, Marquez M, Nicholson B, O’Brien G, Phillips L, Van Buren B, Epstein-Lubow G.

OBJECTIVE:

Inclusion of patients in research activities has increased in the United States but no guidelines for inclusion of individuals with cognitive impairment exist. The experiences from the Persons Living with Dementia (PLWD) Stakeholder Group that formed to support the first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers provided a test of feasibility of this type of participation for a major research meeting and an opportunity to understand specific contributions of the Group.

METHODS:

The PLWD Stakeholder Group was formed by Summit co-chairs as one of six stakeholder groups charged with providing input into the Summit agenda and meeting recommendations. Members were recruited through clinician/researchers with personal knowledge of potential members. Following the Summit, Group members convened to review Group contributions to the Summit agenda, list of speakers, and Summit research recommendations.

RESULTS:

The PLWD Group influenced the content of the Summit agenda and some Group members were invited to contribute through Summit presentations. The Group influenced Summit outcomes: of the 58 research recommendations that emerged, 30 express ideas contributed by the PLWD.

CONCLUSIONS:

The Stakeholder Group for PLWD proved feasible to implement and impacted the agenda and output of a major national research meeting on dementia.

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Readiness assessment for pragmatic trials (RAPT): a model to assess the readiness of an intervention for testing in a pragmatic trial

Rosa R. Baier, Eric Jutkowitz, Susan L. Mitchell, Ellen McCreedy & Vincent Mor

Background

Pragmatic randomized, controlled trials (PCTs) test the effectiveness of interventions implemented in routine clinical practice. Because PCT findings are generalizable, this approach is gaining momentum among interventionists and funding agencies seeking to accelerate the testing and adoption of evidence-based strategies to improve care and outcomes. Particular attention is being paid to non-pharmacological interventions, which are often complex and may be difficult to uniformly implement across multiple sites. While many such non-pharmacological interventions have proven efficacious in small trials, most have not been widely adopted. PCTs could accelerate effectiveness testing and adoption, yet there are no established criteria to identify interventions ready for testing in a PCT.

Methods

We convened 30 interventionists and healthcare leaders to identify criteria to assess the readiness of non-pharmacological interventions for PCTs. Based on this discussion, we created a model with multiple domains, qualitative scoring guidelines for each domain, and a graphical summary of readiness assessments. All workshop participants had an opportunity to review and comment on the resulting model; three piloted it with their own interventions. Several other experts also provided input.

Results

The Readiness Assessment for Pragmatic Trials (RAPT) model enables interventionists to assess an intervention’s readiness for PCTs. RAPT includes nine domains: implementation protocol, evidence, risk, feasibility, measurement, cost, acceptability, alignment, and impact. Domains reflect a range of considerations regarding the feasibility of successfully employing PCT methods and the prospect of an intervention’s widespread adoption, if proven effective. Individuals evaluating an intervention are asked to qualitatively assess each domain from low to high readiness. In this report, we provide assessment guidelines and examples of scored interventions.

Conclusions

RAPT is the first model to help interventionists and funders assess the extent to which interventions are ready for PCTs. Scoring efficacious interventions using RAPT can inform research team discussions regarding whether or not to advance an intervention to effectiveness testing using a PCT and how to design that PCT.

Link to article on BioMed Central