A variety of resources are now available to support patient and other stakeholder engagement in high-quality translational research. Consistent with the call from the NIH NCATS to “make community engagement the norm,” the ICTR Community-Academic Partnership program has built a multidisciplinary team of experts available for individual consultations with researchers, in addition to the suite of online resources and training opportunities listed below.
Two-Day Short Course Planned for June 2017
A two day short-course will be devoted to the methods of stakeholder engagement in translational research. Through this workshop’s didactic and experiential learning activities, participants will gain skills to engage stakeholders, e.g., patients, community members, industry, clinical sites, payers and government agencies. Skills will focus on:
- Improving recruitment rates and diversity of participants in research studies
- Reducing missing data or loss to follow up
- Selecting, refining, and measuring high priority patient-centered outcomes
- Enhancing the uptake and real world impact of research
Upon completion of this short course, participants will be able to write an engagement plan including robust engagement activities for grant proposals, and identify resources to assist with planning stakeholder engagement. Course instructors include UW-Madison faculty and national leaders in the methods of stakeholder engagement.
Self-Paced Online Training Modules: Deeply Engaging Patients Through a Mix and Match of Methods
Identifying methods to involve patients in research can be difficult and this training is designed to equip researchers to deeply engage stakeholders in research through access to high quality and vetted information on patient engagement, stakeholder mapping, marketing, and ethical issues in research. These seven online modules support efforts to continuously engage stakeholders through the entire life cycle of a research project. This training explores multiple approaches and tools to engage stakeholders beyond advisory boards, including expanding roles of patients on actual research teams. Self-paced, it can be explored as needed, and will be updated with new resources. Modules include downloadable worksheets, videos, resources, and literature references.
Online Toolkit: Engaging Hard-to-Reach Patient Stakeholders
While researchers understand the value of engaging diverse perspectives, they often have difficulty connecting with patient populations not typically represented in research planning and execution. So-called “hard to reach” stakeholders include racial and ethnic minorities, low-income and low-literacy populations, children and adolescents, and LGBTQ populations. This toolkit, Hard-to-Reach Patient Stakeholders: An Engagement Guide (HARPS), contains a 10-step roadmap and templates to guide successful engagement of diverse stakeholders. The toolkit also includes video clips that feature patient and community stakeholders discussing key concepts in effective patient engagement. These material were a joint production of the Wisconsin Network for Research Support and of the Program of Research on Outcome for Kids (PROKids).
Online Toolkit: Sustaining Engagement of Blended Stakeholder Boards Across the Research Trajectory
The practice of sustaining meaningful engagement with blended stakeholder boards, which include the perspectives of patients, caregivers, healthcare leaders, providers, and disease advocates, throughout the lifecycle of a research project can be challenging. The toolkit consists of videos from a two-day research workshop led by investigators at UW-Madison, as well as multiple templates and materials for planning successful stakeholder engagement. These materials provide guidance on developing and implementing a compelling plan to sustain meaningful stakeholder engagement across the research trajectory. Created by Betty Chewning and Elizabeth Cox, the toolkit is accessible through HIPxChange.
Online Lecture Series: Forming and Sustaining Multi-Stakeholder Panels
Multi-stakeholder panels have the potential to greatly enrich the quality of research by harnessing the synergy of multiple perspectives. However, effectively incorporating these panels into the research process can be challenging. This five-part lecture series was offered as part of the 2016 Patient-Centered Outcomes Research training opportunities to guide users on the ins and outs of forming and sustaining multi-stakeholder panels. The lectures are now available in the UW School of Medicine and Public Health Video Library .