Part 2: Q&A with Hopewell Health Advisor Dr. Jim Rodrigue

March 26, 2024

Part 2: Q&A with Hopewell Health Advisor Dr. Jim Rodrigue

March 26, 2024

Welcome back to part two of our in-depth Q&A series with Jim Rodrigue, a distinguished advisor at Hopewell Health, where we continue our exploration into the critical aspects of kidney transplantation. Dr. Rodrigue shares his insights on the balance between information provision and comprehension, the impactful strategies to address the diverse needs of patients, and the future directions of research and policy development that promise to improve the outcomes and processes of kidney transplantation. Join us as we uncover the profound effects of education, innovation, and collaboration in the journey towards a more equitable and successful transplant system.

How important is patient and family education in improving outcomes in kidney transplantation, and what are the best practices for delivering this education? What role does technology play in advancing these educational efforts?

Patient and family education, of course, are very important throughout the kidney transplant process – from the time a patient begins thinking about their ESKD treatment options to that first year after a kidney transplant. Ideally, education is ongoing, tailored to the health literacy of the patient, and simply one component of a shared decision-making approach involving the patient, their family members, and their most trusted healthcare providers.

During the transplant evaluation process, many patients are overwhelmed by the vast amount of information and the complexity of it all. Many programs provide patients with a transplant handbook and require them to attend an informational seminar lasting one to two hours during the evaluation process. Also, each meeting with a transplant nephrologist, surgeon, social worker, nurse coordinator, pharmacist, financial coordinator, and nutritionist leads to more information. Unfortunately, we have found in our studies that the uptake and retention of all this information by patients is not that great.

On the one hand, transplant programs have an obligation to fully inform patients about the risks and benefits of transplantation and everything that accompanies being wait-listed and getting a transplant. On the other hand, the vastness of the information can be overwhelming, which is why it’s helpful for the patient to have one or more family members participate in the educational process.

There are health education specialists who are far more expert than me, so I will defer to them for thoughts on how to improve upon transplant education overall. From my own experience, I would say that there should be more focus on providing more culturally relevant information in the patient’s preferred language. For instance, the implementation of Hispanic Transplant Clinics at a few transplant programs, with providers who speak Spanish and materials written in Spanish, has led to substantial increases in the number of Hispanic patients seeking transplant evaluation, completing the transplant evaluation, being listed for transplant, and receiving a kidney transplant (including a living donor transplant).

Also, I am a strong proponent of peer mentorship programs in which transplant patients are matched with another patient (“peer mentor”) who has undergone training and who has been through it all already. Peer mentors can supplement information provided by transplant programs and place it into appropriate context from a patient’s perspective. They can also be a source of emotional support, reassurance, and validation, and share experiences about the kidney disease and transplant journey.

Finally, I think there is considerable value in staying connected to patients throughout the journey via email, text messaging, and AI-assisted technologies (e.g., Chatbots). This provides an opportunity to update the patient about new transplant-related information, share patient-oriented videos with informational and testimonial messages, answer questions as they arise for patients (versus waiting until the next clinic appointment), keeping patients abreast of their evaluation and their status on the waiting list, and ensure that the patients don’t feel “lost” within the vastness of the transplant journey. 

Looking ahead, what are the most promising areas of research or policy development that could significantly improve the process and outcomes of kidney transplantation? How can the transplant community work together to address these challenges?

Again, I think the NASEM report provided a roadmap for the transplant community on many ways to improve process and policies, while increasing equity in kidney transplantation. Modernizing the technology around transplantation will increase efficiencies and improve transparency. In my mind, understanding why so many kidneys are recovered by OPOs and not transplanted by transplant programs and then developing national policies to address this are critical priority areas. The United States far exceeds most other countries in the number and proportion of kidneys that are recovered and not transplanted – this must change and it will require collaboration from all key stakeholders.

There are many other exciting developments in the field.

  • With appropriate guardrails, AI could improve efficiencies throughout the entire process for transplant programs, which would have immediate benefit for patients. Additionally, AI could be leveraged to create platforms for data sharing and collaboration among transplant centers and researchers to accelerate the discovery of new therapies and improve practices through the analysis of large, diverse datasets.
  • Developing more effective and less toxic immunosuppressive drugs could lower the incidence of rejection and lessen some of the long-term side effects of immunosuppression, which would improve the overall quality of life of patients. Tailoring immunosuppressive therapy and monitoring based on genetic, molecular, or cellular markers is a precision medicine approach that could improve graft survival rates and reduce adverse effects.
  • More research and broader adoption of normothermic regional perfusion may increase the pool of transplantable kidneys from certain deceased donors and also improve short-term outcomes following kidney transplantation.
  • The development of bioartificial kidneys and the use of stem cell technology for organ regeneration or repair present an increasingly tangible way to address organ shortage and reduce dependency on immunosuppressive medications.
  • Policies aimed at removing disincentives for all living donors, not just those who meet certain financial thresholds, could increase the number of living kidney donors. Policies and legislation are needed to increase financial protections and job security, eliminate health and life insurance discrimination based on living donation history, and provide coverage for any donation-related medical expenses.
  • The vast majority of the population supports organ donation, but only slightly more than half register as organ donors. Few gains have been made in the proportion of organ donors in the last several years. In my view, a national collaborative is needed to think outside of the box to identify a national multi-pronged approach to increasing registered organ donors. In the absence of donor registration, organs are much less likely to be recovered from a medically suitable deceased donor. Increasing donor registrations will increase the number of kidneys available for patients on the transplant waiting list.
What initially drew you to focus on kidney transplantation and living donation, and how has your vision for the field evolved? What legacy do you hope to leave in the realm of transplantation?

Early in my academic career, a transplant nephrologist and transplant surgeon convinced me that there were so many complex psychosocial needs of patients that were not particularly well addressed by existing clinical systems in transplantation. So, I developed a transplant behavioral health clinical service line that addressed the unique needs of transplant patients of all ages (pediatric and adult) and their families across the entire transplant spectrum, from initial evaluation to post-transplant survivorship.

Through my interactions with transplant patients and families, I quickly learned that most did not have access to or chose not to pursue the most optimal treatment, i.e., a living donor kidney transplant. Also, the racial/ethnic and socioeconomic disparities in living donor transplantation became quite obvious. So, increasing the likelihood of living donor kidney transplantation, especially in marginalized populations, became a big focus for me. This was the catalyst for developing the Transplant House Calls program. Through this program, the hundreds of interactions I’ve had with patients, and people in their social networks, sitting in their living rooms are the most meaningful ones I’ve had in my professional career.

My 5-year-old brother died of kidney disease before he had the opportunity of a life-saving kidney transplant. In addition to the loss of life of someone so young, the trauma inflicted upon our entire family system is something I’ve strived throughout my career to help others dealing with ESKD avoid.

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