Dialysis Research Education Toolkit
A UNC-led interdisciplinary team developed a Dialysis Research Education Toolkit aimed at: 1) teaching patients, care partners and clinic personnel about research, 2) helping researchers work in the dialysis setting, and 3) generating enthusiasm about dialysis research.
About the Toolkit
Research can create better futures for people on dialysis and those who care for them in clinics and at home. Diverse dialysis stakeholders identify increasing research knowledge among patients and clinic personnel as key to fostering research ready dialysis clinic cultures.
In response, Dr. Jenny Flythe and an interdisciplinary team developed a Dialysis Research Education Toolkit informed by more than 150 stakeholders, including 50+ patients and care partners. The toolkit includes a video featuring a dialysis patient and nurse, a companion brochure, a clinic lunch & learn discussion guide, and 10 researcher tips.
The video and brochure answer such questions as “What is research?”, “How do researchers keep study participants safe?” and “Why might I want to participate in research?” The lunch & learn discussion guide fosters conversation about research concepts and concerns among clinic personnel. The researcher tips provide insight into research-related issues that matter most to patients and clinic personnel.
Recommended Uses for the Dialysis Research Education Toolkit Materials
Video and Brochure:
- All: Watch the video and review the brochure at a dialysis clinic or at home.
- Clinics: Show the video on treatment station screens and share copies of the brochure.
- Clinics: Show the video and share the brochure on “lobby days.”
- Researchers: Use the materials 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 video and brochure on your websites and social media accounts.
Lunch & Learn Discussion Guide: Dialysis clinics can use the guide to facilitate a lunch & learn session or clinic personnel meeting about dialysis research. The 20-30 minute session is for all dialysis clinic personnel, regardless of role or past research experience.
Tips for Researchers Conducting Studies in Dialysis Settings: Researchers can review these tips when planning dialysis research. The tips highlight issues that dialysis patients and clinic personnel care about most.
Project Funding & Copyright Information
Toolkit materials funded by the Patient-Centered Outcomes Research Institute (PCORI) Engagement Award #3253.
To learn more about research and find kidney research opportunities for you, go to…
- Research Term Glossary
- This National Kidney Foundation website provides information on clinical trials.
- This National Institutes of Health website provides information on the basics of clinical trials in question and answer format.
- This Food and Drug Administration website explains the differences in clinical research and medical treatment and provides information on clinical trials.
- This National Institutes of Health website lists clinical research studies from all over the world.
- This website allows you to look for research studies on kidney disease and related treatments in the clinicaltrials.gov database.
ASK a member of your medical team
Project Lead: Jenny Flythe, MD, MPH
Study Coordinator: Julia Narendra, MPH
Research Assistant: Adeline Dorough, BA
- Laura Dember, MD, University of Pennsylvania Perelman School of Medicine
- Daniel Lee, PhD, University of Michigan School of Public Health
- Jonathan Oberlander, PhD, University of North Carolina at Chapel Hill
- Antoinette Ordish, MS, Fresenius Medical Care
- Caroline Wilkie, patient
- Cynthia Christiano, MD, East Carolina University Brody School of Medicine
- Jessica Farrell, MSW, Fresenius Medical Care, social worker
- Richard Fissel, patient
- Barbara Gillespie, MD, MMS, Covance
- Jay Ginsberg, MD, Southeastern Connecticut Nephrology Associates
- Colleen Jabaut, Fresenius Medical Care, nurse manager
- Jenny Kitsen, former ESRD Network of New England director
- Brigitte Schiller, MD, Satellite Healthcare
- Terry Sullivan, Fresenius Medical Care/ Renal Research Institute, operations
- Amy Young, DaVita Clinical Research
- Jennifer St Clair Russell, PhD, Duke University School of Medicine
Video Production Team
- Terence Oliver, MA, UNC School of Media and Journalism, animator
- Darrel Greene, Jesty Beatz Productions, audio producer
- Robb Kehoe, UNC School of Medicine, instructional media producer
- Nate Auler, video nurse
- Jason Burnette, video patient
- Megan Hollingshead, voice talent
Contact the Research Team
Learn more about the team’s research on their website.
Jenny Flythe, MD, MPH
UNC Kidney Center
7024-Burnett Womack CB #7155
Chapel Hill, NC 27599-7155
Julia Narendra, MPH
Let’s start with what the word “research” means… Research is a process used to find out new knowledge or new information. It starts with an idea or a question. Research can be scientific experiments in a lab or studies with patients in a clinic.
Research allows us to find new treatments and help patients. For example, the dialysis machines and medications we use today were created and tested through research– research that involved people like you!
Most often, the goal of research is to make discoveries that will help future patients. Research can be exciting and can lead to promising treatments, but like many things, it can come with challenges. Research can take a long time, and it doesn’t always give clear answers. If you decide to participate in research, you may not see its effect on your own medical care, but it could help others in the future.
Many people think about medicines when they hear the word research. As a dialysis patient, you may take binder pills or blood pressure medicines. As clinic staff, you may give patients EPO or iron. Years of research went into making these medicines and thousands of patients, clinic staff and doctors made them possible by participating in the research studies that tested them. It was a TEAM effort.
Now, let’s take a moment to talk about types of research.
There are a lot of different types of research. There are studies that test new medicines to treat symptoms like itching and upset stomach; others about ways to stop cramping and blood pressure drops; and still others about how to increase the number of kidney transplants.
So far- we’ve talked about research that asks volunteers to do something like take a medicine or complete a task. You may hear this called a “clinical trial.”
A “clinical trial” is a type of study that tests health-related treatments or procedures.
But, research is more than clinical trials. Research can include reviewing information from medical charts or asking people what they think or how they feel about a topic.
Research comes in all shapes and sizes. Studies can be small with a few patients at just one clinic or they can be big with thousands of patients from many countries. Studies can be short such as doing just one interview, or they can be long, where patients are followed over many years.
Every study is a little different.
In general, research is how scientists and doctors answer questions and get information that they hope can be used to improve the lives of future patients.
Dialysis Patient: Wow- I didn’t realize that there are so many kinds of research. I was in a study just a few months back where I talked about symptoms that bother me on dialysis. I was part of a group of patients that gathered together and the researcher asked us questions. I enjoyed hearing other patients talk about their symptoms and it felt good to know that sharing my story could help.
Dialysis nurse: I once helped in a study by giving patients a study medication. I chose to help because I wanted to support patients beyond those in my own clinic. Jason, what made you want to participate?
Dialysis patient: You know- Nate- I wanted to help other people who sit in this chair like me. I wanted to try and give them a better future, so maybe they wouldn’t have to go through what I’ve gone through. I volunteered because the researchers took time to explain it to me and made me feel comfortable.
Dialysis nurse: Let’s go back to the video and learn more.
If you are interested in participating in research, there are important things to know.
No matter the type…
No matter the size…
No matter the length…
ALL studies are reviewed by experts not involved with the research itself. This group of experts is called an Institutional Review Board or I R B- for short. The IRB makes sure that studies are safe and that people have a way to get out of the study if they want to stop.
All researchers work from a written plan that they have to follow.
The IRB must review and approve this plan BEFORE a study can start.
If you are asked to participate in research, you should never feel pressure to do it. It’s your CHOICE. And if you do decide to participate, you can change your mind and STOP at any time. Stopping or leaving a study will not affect your dialysis care.
It is important to know that research can have risks, and depending on the study, participants may experience discomfort or harm. Any and all risks must be explained to people before they sign-up to participate. Researchers and the IRB make sure that any risks are as small as possible and that patients know who to go to if they have problems or questions.
For most studies, you will be asked to sign a consent form. A consent form has information about the study’s possible risks and benefits. It also tells you why the research is being done and how it might help others. This way, you know what you are signing up for.
All researchers must also make sure that your information is kept safe and confidential. Only researchers can access your study information- no one else.
Altogether, this means that researchers must follow many rules to make sure you are safe and protected. Research has many steps that you never see.
Although research may have risks, and those risks differ depending on the study, there are many reasons why you might want to participate. For example, you might want the chance to learn from others’ experiences or help future dialysis patients. Or, you might be interested in the research topic or just want to learn about new things.
It is important to remember that some research does not lead to clear answers and many times research does not lead to a direct benefit for those participating in the study.
However, studies that don’t lead to clear answers can lead to new ideas! And, new ideas can lead to more research and eventual benefit for future patients.
But, even small studies may take a while. Research takes a lot of time.
Researchers should tell you how long a study will take and when you should expect updates. But, if they don’t… be sure to ASK. It’s important that you ask researchers ALL your questions. All questions are good questions.
The goal of research is to create better futures for people on dialysis, those who care for them in clinics, and those who help them at home.
Your involvement in research- as a patient, care partner, staff member or doctor- is important. YOU are an important member of the team.
Research is going on around us all the time. Today’s research could help the patients of tomorrow have a better future.
Dialysis patient: Thank you for watching our video!
Dialysis nurse: Hey- even making this video involved RESEARCH. Thank YOU to the more than 75 dialysis patients, care partners, clinic staff and doctors who gave us the ideas that shaped this video. It was a TEAM effort.