RAMONA KORENI
University of Colorado Anschutz Medical Campus

Patient engagement in healthcare research may be beneficial to enhancing research studies in enhancing research feasibility, acceptability, rigor and relevance. The active collaboration between patients and researchers can inform the full spectrum of research activities (planning study design, selecting relevant outcomes, tailoring interventions to meet patient needs and preferences, enhancing patient study enrollment, study implementation/conduct, analyses review, and dissemination). Specifically, actively engaged patient participation in these various research activities throughout the research project lifecycle can produce interventions that align more with patient needs and are more acceptable by patients thus leading to greater patient uptake and engagement and potentially greater improvement in intervention outcomes.
 
The Invested in Diabetes project, a comparative effectiveness cluster-randomized pragmatic trial comparing two methods of implementing diabetes shared medical appointments, engaged patient partners from conception through implementation and continues to engage patients as findings begin to be disseminated. This presentation will describe the experience of the patient-researcher partnership and how engagement evolved throughout the course of the project.

The study takes place in primary care practices in Colorado and Kansas. The views represent Colorado-based patient stakeholders and University of Colorado researchers.

Five stakeholders and four researchers responded to questions around their perception of patient stakeholder involvement. Project notes and deliverables were looked at to examine the change in engagement over time.

Stakeholders entered the project at different times and had different motivations for participation. Engagement and expectations changed significantly for stakeholders as the project went from concept to implementation, with stakeholders moving from an advisory role to assisting in project deliverables and otherwise becoming part of the study team as patient partners. Stakeholders responsibilities included finalizing study outcomes of interest, developing training and onboarding materials for peer mentors, co-leading peer mentor learning collaborative calls, and reviewing patient-facing materials for practices. Changes in interaction between the stakeholders and researchers naturally occurred as well, as will be discussed.

Patient stakeholders played a critical role in the Invested in Diabetes project. The prolonged engagement resulted in a stakeholder advisory role that transformed in response to the changing needs of the project over time. Projects utilizing patient stakeholders should consider how to best engage them based on their project needs,and should expect to re-evaluate the relationship over time.

BRYAN R. GARNER, PhD
RTI International

The Delphi method has been used since the 1950s as a method for collecting and synthesizing “expert” judgments. To increase the “efficiency of the process” and decrease “the time to perform such studies” Gordon and Pease (2006) introduced the Real-Time Delphi (RTD) method. The RTD method produces results similar to conventional Delphi studies, but more quickly and efficiently due to the feedback being provided immediately (i.e., in real time). To date, the conventional Delphi method and the RTD method have been limited to use with small group of “experts.” According to the Kotter Change Framework, successful change efforts result from building a guiding coalition of stakeholders that can lead the identification of specific recommendations. Guided by this framework, the Substance-Treatment-Strategies for HIV (STS4HIV) Project developed the Stakeholder Engaged RTD (SE-RTD) as a method to engage a large group of key stakeholders and empirically identify stakeholder-driven recommendations for improving the integration of evidence-based treatment interventions for substance use disorders (SUDs) within HIV service settings. This presentation will describe the SE-RTD method, as well as illustrate how it has been successfully used as part of the STS4HIV Project.

The stakeholder groups of interest for the STS4HIV Project include: 1) people with HIV, 2) staff from HIV service organizations, 3) members of HIV planning councils/bodies, and 4) staff from AIDS and Education Training Centers (AETCs).

The RTD web-program developed by Gordon and Pease (2006) was used for our project’s first SE-RTD, which was focused on identifying and comparing stakeholder groups perceptions regarding the prevalence and negative impacts of five different SUDs for people with HIV. For the project’s second SE-RTD, which was focused on identifying stakeholder perceptions regarding the innovation-practice fit of nine evidence-based SUD treatment interventions, we developed a new and improved RTD web-program that addressed key limitations of the original web-program. Our latest RTD web-program is being customized for use as part of the project’s third and final SE-RTD, which is focused on identifying stakeholder perceptions regarding strategy-purveyor fit of 10 strategies AETCs may consider using to help improve the integration of evidence-based SUD treatment interventions within HIV service organizations.

Of the 805 individual stakeholders invited to participate in the first SE-RTD, 643 (80%) engaged and completed participation. Of these 643, 109 (17%) were people with HIV, 419 (65%) were staff from HIV service organizations, and 115 (18%) were members of a HIV planning council/body. Of the 253 HIV service organizations invited to participate, 203 (80%) engaged and completed participation.

The SE-RTD is a new method for both engaging stakeholders and empirically identifying stakeholder-driven recommendations.