Working with Patients, Communities & Organizations
Programs affiliated with ICTR Community-Academic Partnerships (ICTR-CAP) provide services and activities to support engagement of patients and other stakeholders in research across the translational spectrum at UW and beyond.
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Center for Patient Partnerships (CPP)
The Center for Patient Partnerships (CPP) is affiliated with the UW Schools of Law, Medicine and Public Health, Nursing, and Pharmacy. CPP’s mission is to engender effective partnerships among people seeking health care, people providing health care, and people making policies that guide the health care system. CPP accomplishes this through education, advocacy, research and policy. Sarah Davis, JD, MPA, Schools of Law and Pharmacy, is the stakeholder engagement faculty lead, firstname.lastname@example.org.
- Particular expertise in deeply engaging patients and other stakeholders in research, e.g., continuous and meaningful inclusion that honors stakeholders’ valuable contributions across the entire research trajectory.
- Consultation services to create an engagement plan, identify and connect with key stakeholders, proposal review/feedback, budget planning for engagement work, participation as a funded collaborator in proposal submissions.
- Offers targeted resources and self-paced online training.
- Contact: Sarah Davis at email@example.com, or (608) 265-0906
- Download the CPP Flyer (PDF) detailing stakeholder engagement resources for research teams.
Program of Research on Outcomes for Kids (PROKids)
The Program of Research on Outcomes for Kids (PROKids) is a child health services research program within the UW Department of Pediatrics. PROKids focuses on research and quality improvement efforts to optimize the health of children in the community, including access to care, quality and safety of care, and outcomes from care. A central theme in all PROKids activities is the engagement of stakeholders such as children, teens, parents, multidisciplinary healthcare providers, child health advocates, payers, and healthcare leadership in designing, delivering, and evaluating interventions to improve children’s well-being. Elizabeth Cox, MD, PhD, School of Medicine and Public Health, Department of Pediatrics, is the stakeholder engagement faculty lead, firstname.lastname@example.org.
- Consultation services include grant proposal review and feedback, developing engagement plans, identifying key stakeholders, budget planning, IRB issues to consider, templates and toolkits to consider.
- Contact: Harald Kliems, MA, at email@example.com
- Download the PROKids Research Flyer (PDF) detailing stakeholder engagement resources for research teams.
Sonderegger Research Center
The Sonderegger Research Center-UW School of Pharmacy is a recognized UW research center that helps investigators design and conduct patient-centered health services research to improve the health of diverse populations in Wisconsin and beyond. Stakeholder engagement is supported throughout this consultation work. Sonderegger Research Center is a designated core resource for applicants seeking ICTR funding. Betty Chewning, PhD, School of Pharmacy, is the stakeholder engagement faculty lead, firstname.lastname@example.org.
The Center assists researchers through:
- Consultation on how to design and implement meaningful stakeholder engagement across the lifecycle of a grant. This includes identifying stakeholders, key questions for stakeholders at each stage of the study, planning stakeholder meetings and other assessment modes to gather meaningful input and how best to integrate advice throughout a study.
- Consultation and support for planning research grants, grants management, IRB applications, secure observational data storage. Templates have been developed to help plan each stage of stakeholder engagement including ongoing groups of multiple stakeholders (e.g, patients, care partners, health care providers, health care managers, advocacy organizations and policy makers.)
- Ongoing collaborative, statewide partnerships with community groups and other health care partners for PCOR research.
- Contact: Dale Wilson, at email@example.com, or (608) 263-4883
- Download the Sonderegger Research Flyer (PDF) detailing stakeholder engagement resources for research teams.
VA Hospital Research Program
Strategic Alliances for Veteran Voice and Engagement (SAVVE) is an initiative aimed at developing researchers and Veterans who have the savvy to effectively engage stakeholders in impactful research. This initiative grew out of the endeavors of the Patient Engaged in Education and Research (PEER) Group, the patient and caregiver arm of a Patient-Centered Outcomes Research Institutes (PCORI) Eugene Washington Engagement Award to the University of Wisconsin (PI: Safdar). The purpose of the PEER group is to facilitate conversations between patients, families, caregivers, researchers, clinicians and other stakeholders. PEER Group membership is comprised primarily of older adults from rural areas in Wisconsin and includes Veteran representation. While our PEER Group effort is primarily focused on research around healthcare-associated infections, engaging with the Veteran population around this cause certainly added knowledge that will prove helpful in a multitude of settings. Nasia Safdar, MD, PhD, School of Medicine and Public Health, Department of Medicine, is the stakeholder engagement faculty lead, firstname.lastname@example.org.
- SAVVE investigators are interested in collaborating in proposal submissions as co-investigators where appropriate, and will provide proposal review. The SAVVE team has experience navigating the Veterans engagement waters and has Veteran-focused research connections across the country which can serve as access points.
- Services include: One-time or ongoing consultations depending on the applicant’s desired involvement; Ongoing consultation with identification of key stakeholders and assistance in operationalizing and evaluating stakeholder participation; Review of multi-stakeholder group materials (e.g., agendas, presentations); Guidance on optimizing participation in multi-stakeholder groups; Grant review following a pilot award.
- Contacts: Nasia Safdar, MD, PhD, email@example.com, Linda McKinley, RN, MPH, firstname.lastname@example.org, Julie Keating, PhD, email@example.com, Sydney Hoel, BS, firstname.lastname@example.org
- Download the VA Research Flyer (PDF) detailing stakeholder engagement resources for research teams.
- Check out the video capture from the May 19, 2017 Workshop ‘Veteran Engagement in Research: An Interactive Workshop for Researchers’ led by Sara Knight, PhD, Nasia Safdar, MD, PhD, and Jeff Whittle, MD.
Wisconsin Network for Research Support (WINRS)
The Wisconsin Network for Research Support (WINRS) is a resource for patient and community engagement and research equity. WINRS provides a suite of consultation services to support researchers in effectively recruiting diverse study participants and engaging stakeholders to advise on projects, especially people from underrepresented and under-served communities. WINRS services are available to all UW-Madison researchers, as well as researchers at other institutions. Services include consultation to:
- develop tailored orientation programs for community or patient advisors
- design interactive advisory board meeting agendas to maximize engagement
- advise on project activities and strategies for successful recruitment and retention
- review public-facing materials to incorporate plain language principles
WINRS staff also coordinate meetings with CARDS (Community Advisors on Research Design and Strategies)®, two standing focus groups of Madison community members affiliated with Goodman Community Center and the Lussier Community Education Center. CARDS® members draw on their lived experiences to offer researchers actionable feedback on a wide range of project plans and materials, including recruitment strategies and materials, consent forms, survey and interview questions, program handouts, smartphone apps, websites, and more. The CARDS® bring valuable perspectives from diverse racial, socioeconomic, and educational backgrounds.
WINRS Staff: Kat Phelps, PhD; Mariana Garcia, PhD
WINRS Faculty Advisor: Barb King, PhD, APRN-BC, FAAN, UW-Madison School of Nursing.
ICTR Funding to Support Stakeholder Engaged Research
ICTR offers an array of funding opportunities, including awards for investigators interested in patient- and stakeholder-engaged research. These pilot funds support development of strong stakeholder engagement strategies needed for grant applications to PCORI or AHRQ. Previously funded projects are described here.
Tools & Toolkits
Our team of UW experts has developed several downloadable toolkits for engaging patients and other stakeholders in research. Click here to explore the Tools for Stakeholder Engagement in Research available on HIPxChange, an ICTR-CAP dissemination portal.
This online training offers seven modules to support efforts to continuously engage stakeholders through the entire life cycle of a research project.
Online Video Series
This five-part lecture series was offered as part of our 2016 Patient-Centered Outcomes Research training opportunities. The recorded lectures are available in the UW SMPH Video Library.
Additional Resources from the Engaging Patients & Other Stakeholders in Translational Research: Tools and Best Practices for Research Teams Short Course (June 1-2, 2017) are available.
Additional Resources from the Engaging Key Partners to Design & Conduct High Quality Research Short Course (June 5-6, 2018) are available.
Thank you for attending!