Turning Research into Action: Educating Dialysis Patients about the Benefits of Kidney Transplantation

Meet Alex

Several years ago, when I was only a first year medical student, I started out on a research project to find out why so few patients – specifically minorities – with kidney failure end up getting a kidney transplant. Research abounds on the topic, but we went ahead anyways mostly to flesh out details on minority care and to have solid proof that the problem exists in our own backyard. Our findings were eventually published in Transplantation – a respectable journal in the field.

At the end of our article, we thought about writing a familiar refrain: more research is needed on the subject to better understand it. But we didn’t. Our findings only added to an already sizable body of knowledge about a known problem; doing more research wasn’t going to solve it. Sure – additional research may be beneficial, but it would have come at a cost and may have only been marginally helpful. Given finite resources, as certainly within medicine, every action is subject to an opportunity cost; in the case of additional research, the opportunity cost could be taking those same resources and using them towards an intervention. Additional research is also subject to decreasing returns to scale. In other words, our findings weren’t as useful as the first person to ever describe it. And additional papers may not be as helpful as ours, unless they add some twist that has not previously been looked at (like minority care, as in our case).

Instead, we ended our article writing, “… more extensive educational campaigns … may allow a greater patient access to preemptive waitlisting and … transplantation.” Still we didn’t feel this was enough. Our paper showed that even in our own community patients were actively receiving substandard care. Only a few patients were being transplanted before starting dialysis (avoiding dialysis all together is the best). And, a large number of patients – specifically minorities – were spending months – even years – on dialysis (if you can’t avoid going on dialysis before a transplant, keep it as short as possible). So, we decided to implement an “intervention”.

Selecting an “intervention” and translating it into a final product was not easy and took years (for some perspective, I am now a third year resident). With the help of $15,000 in funding and skills from our transplant center, we made a trilingual video to educate end stage renal disease patients in the South Florida community about the benefits of a transplantation and how they can get one. Educating patients is usually a safe bet in terms of improving care. However, skeptics may want additional research showing that education works, which can be helpful but can also consume precious resources that could otherwise be used toward an intervention. Not that we needed it, but a paper published showed that making patients aware about kidney transplantation – as anyone would guess – increases awareness about kidney transplantation.

Our videos are available on YouTube in English, Spanish, and Creole to cater to the large number of Hispanic and Haitian patients with kidney disease in our community. Although the videos provide information specific to South Florida residents, we encourage others throughout the world to use them to deliver the main message about the benefits of transplantation. Collectively, the videos have a limited number of views at the moment, but we hope this number grows.

We also hope that these videos are an inspiration to others to effect practical change in other areas of medicine that so urgently need physician leadership and action. Additional research is always helpful, but is subject to decreasing returns to scale and opportunity costs. Sometimes, the best course may be turning those research findings into actionable change – even if you are only a medical student.

Acknowledgments: This project would not have been possible without the important contributions from Dr. Alayn Govea, Wei Yang, Hadi Kaakour, Dr. Giselle Guerra, Dr. Warren Kupin, Dr. Gaetano Ciancio, Dr. Oliver Lenz, Novartis, the Miami Transplant Institute, the University of Miami, and Jackson Memorial Hospital.