Dialysis Research Education Toolkit
Developed with input from >150 stakeholders, this toolkit aims to foster research-ready dialysis clinic cultures by teaching patients, care partners, and clinic personnel about research, helping researchers work in the dialysis setting, and generating enthusiasm about dialysis research.
It would help if we were partners…instead of the entity who’s doing the research working to solve the problem, now everybody is helping with it.
Research is not about money. It’s about knowing that we are doing something to benefit patients in the long run.
Video and Brochure: Answers questions like “What is research?”, “How do researchers keep study participants safe?” and “Why might I want to participate in research?”
- Clinics: Show the video on treatment station screens and share the brochure on “lobby days.”
- Researchers: Use the toolkit to promote research interest among patients, clinic personnel, and medical providers in dialysis clinics where you hope to conduct studies.
- Dialysis Organizations and Patient Advocacy Groups: Share the toolkit (websites, social media) as a resource for individuals seeking to conduct and/or participate in dialysis research.
Lunch & Learn Discussion Guide: Use to facilitate a 20-30 minute lunch & learn session or clinic personnel meeting about dialysis research. The discussion questions are designed to foster conversation about research concepts and concerns among all dialysis clinic personnel, regardless of role or research experience.
Tips for Researchers Conducting Studies in Dialysis Settings: Review when planning to conduct dialysis research. With input from over 150 dialysis stakeholders, these highlight the issues that dialysis patients and clinic personnel care about most.
- 2018 Workshop Agenda
- 2018 Workshop Attendees
- Building Research Capacity
- Research Concepts and Terms
- IRBs Contracting Legal Issues
- Engaging Patients in Research
- Clinic Personnel and Research Readiness
- Research QI Job Duties Handout
Workshop Reflections & Summary
- David White (patient): Reflections on my Experience at the Building Research Capacity in the Dialysis Community at the Local Level Workshop
- Executive Summary: Outlines key barriers and facilitators to advancing dialysis research capacity, with the goal of improving clinical outcomes and patient experiences among individuals receiving dialysis.
- Flythe JE, Narendra JH, Hilliard T, Frazier K, Ikeler K, Amolegbe A, Mitchell D, Dorough A, Lee SD, Ordish A, Wilkie C, Dember LM; Building Research Capacity in the Dialysis Community at the Local Level Stakeholder Workshop Participants. Cultivating a Research-Ready Dialysis Community. J Am Soc Nephrol. 2019 Feb 8;30(3):375–80. PMID: 30737271
To learn more about research…
- Research Term Glossary (UNC Kidney Center)
- Clinical Trials: What You Need to Know (National Kidney Foundation)
- Clinical Research Trials and You: Q&A (The National Institutes of Health)
- Clinical Research vs Medical Treatment (Food and Drug Administration)
To find kidney research opportunities…
- Jennifer “Jenny” Flythe, Project Lead (UNC Chapel Hill)
- Laura Dember, Co-Investigator (University of Pennsylvania)
- Daniel Lee, Co-Investigator (Virginia Commonwealth University)
- Jonathan Oberlander, Co-Investigator (UNC Chapel Hill)
- Antoinette Ordish, Co-Investigator (Fresenius Medical Care)
- Caroline Wilkie, Co-Investigator (Patient)
- Jennifer St Clair Russell, Education Consultant (Duke University)
- Julia Narendra, Study Coordinator (UNC Chapel Hill)
- Adeline Dorough, Research Assistant (UNC Chapel Hill)
Video Production Team
- Terence Oliver, Animator (UNC School of Journalism and Media)
- Darrel Greene, Audio Producer (Jesty Beatz Productions)
- Robb Kehoe, Instructional Media Producer (UNC School of Medicine)
- Nate Auler, Nurse
- Jason Burnette, Patient
- Megan Hollingshead, Voiceover Arist
Thank you to our fearless stakeholder panel who supported these efforts in hopes of creating better futures for individuals receiving dialysis!
- Richard Fissel, Patient
- Cynthia Christiano, Nephrologist (East Carolina University)
- Jessica Farrell, Social Worker (Fresenius Medical Care)
- Barbara Gillespie, Nephrologist & Vice President (Covance)
- Jay Ginsberg, Nephrologist (Southeastern Connecticut Nephrology Associates)
- Colleen Jabaut, Nurse Manager (Fresenius Medical Care)
- Jenny Kitsen, Former ESRD Network of New England director
- Brigitte Schiller, Nephrologist & CMO (Satellite Healthcare)
- Terry Sullivan, Operations (Fresenius Medical Care/Renal Research Institute)
- Amy Young, Vice President (DaVita Clinical Research)
Toolkit materials funded by the Patient-Centered Outcomes Research Institute (PCORI) Engagement Award #3253.