By David White, Kidney Advocacy Committee member
The “Building Research Capacity in the Dialysis Community at the Local Level” workshop was the first of its kind to focus exclusively on improving the research capacity of dialysis clinics. The workshop, funded by a Eugene Washington Patient-Centered Outcomes Research Institute (PCORI) Engagement Award, brought together patients, care partners, clinic staff members, medical providers, corporate dialysis organization representatives, and researchers to discuss the benefits and realities of incorporating research into routine dialysis care delivery and identify facilitators of and barriers to performing real-world research in local dialysis clinics.
As a former in-center hemodialysis patient, my biggest takeaways were learning that there is a huge difference between the number of dialysis patients who are interested in research and the number who actually participate in research and that the biggest reason they want to participate is to help prevent others from developing kidney disease (many thanks to Derek Forfang for sharing this information with the workshop participants during a very informative presentation and panel discussion).
Just as clinicians should embrace the concept of patient-centered care, researchers and contracted research organizations should be encouraged to make dialysis clinics full partners in any research project that their patients are engaged in. Everyone from clinic leadership to the nurses, techs, patients and families, security personnel, and even transportation providers should have the opportunity to feel like a partner in research; when all contributions are valued and celebrated, any initiative will become easier to execute.
Tavon Sumler, a dialysis patient care technician, shared a great insight as to why he found integrating research into his daily work challenging: he often would have to take a few extra minutes to find the required materials. A few minutes in a dialysis clinic can mean the difference between life and death. I watched clinic staff work for five years and can attest that they have a lot to do and not a lot of time to do it – even before asking them to add clinical trial tasks to their duties.
My personal experience with clinical trials illustrates how relationships are key to conducting effective research in dialysis clinics. I chose to participate in one clinical trial my clinic offered because I was approached by my nurse practitioner, a person I knew and trusted. She explained the purpose of study to me and how the study would be conducted, and emphasized that I could end my participation at any time. Once I agreed to participate, the next step was introducing me to my researcher contact, and she made the introduction personally (I learned during the workshop that this is called a “warm handoff”).
I had another opportunity to participate in clinical trial in the same clinic, and I was not the least bit impressed by the researcher’s attempt to engage with me. I was sitting comfortably during my dialysis “run” one afternoon when a person I had never seen before walked up to my station and asked if I would be interested in being a study participant. My very first thought was “why did you walk up to me – there are two dozen people sitting in chairs,” and that’s exactly what I asked her. She told me that she had been told that I would be a good candidate, but her explanation was even more off-putting than her uninvited approach; it felt like she would rather talk to the clipboard she was holding than to me. I responded by telling her that I was not interested, but it would have been more accurate to say that I was not interested in her or that I was not interested in the study at that time. We both left the encounter disappointed. Mind you, this happened at the very same clinic; if there was a general protocol in place for approaching potential study participants (or a protocol that was already in place was followed), I may very well have responded more positively.
Some lessons learned from this encounter that might be helpful to researchers are:
- I was never informed that someone would be approaching me to see if I might be interested in being a study participant – either before that day or at the beginning of my dialysis shift. Had I been approached in advance, I would have been more likely to participate;
- The person who approached me had poor communication skills. Researchers should practice their approach before engaging with patients;
- No one at the clinic or the research facility ever followed up with me to see why I wasn’t interested. By following up they may learn something to help the next time around and
Communication is a key ingredient to a successful research environment and is one of the biggest stumbling blocks to building research capacity in dialysis clinics. I recommend that every proposal to conduct research in a dialysis clinic setting include a training component that emphasizes communication skills, cultural humility, and seamless integration of research tasks into the clinic’s workflow.