Task 5 Public Comments

Transplant Community Feedback

Robert Friedman, Patient | 12/3/21

With regard to the applicability of any database to the needs of the patient and caregiver populations, numerous factors diminish its usefulness: 1) the population that does not have internet access and/or access to suitable hardware; 2) the population that is not computer literate; 3) the population for whom physical disabilities render the ability to use the interface problematic; 4) the population whose ability to use written English, due to literacy or language issues, is a barrier; 5) the population that is lacking in the baseline awareness and education in transplantation, so as to understand the terminology, questions, and implications of the data; and 6) the population in acute crisis, with cognitive impairments and/or inability to process the quantitative data as a basis for decision-making.

If the above-mentioned groups, along the continuum of disease progression causing the need for a transplant, constitute 80% of the target population, the question arises if, regardless of the appropriateness of the data, is there a capacity to transmit it, even in its best arrayed and most relevant format, to the target population.

Of course, educational curriculum provided online by the major patient organizations is helpful. IPRO efforts at making UNOS data more patient friendly are somewhat helpful. Seminars and support groups can provide information in a more personalized way.

SRTR data can serve as a terrific basis for professionals, patients, and advocates to better facilitate informed decision-making, but with regard to the kidney community (my area of expertise), the core approach is flawed.

The expectation that practitioners will utilize the data is grossly unrealistic. In an ideal model, the doctor: patient relationship would have the doctor accessing the data and helping to inform and guide the patient, but too often patients are served by PCP's who lack the understanding of the transplant processes, eligibility, and options. Specialists too, face enormous demands upon their time, and the productivity demands of their practice preclude spending time with patients in what is essentially a counseling role. Current reimbursement from government and private insurers does not reward time spend in this area, despite the cost: benefit possible from transplantation.

Dialysis centers, under new CMS initiatives, are somewhat incentivized financially to promote transplantation, but the incentive may be insufficient to overcome economic, cultural, and staffing barriers. Many centers are staffed by nephrologists who have an ownership stake in the clinics, or a vested financial interest in maintaining their patient population. While patient hospitalizations and mortality disrupt the center operation, turnover from transplants also disrupt a model where the smallest number of patients needed to maintain chair utilization is the most manageable goal.

If the social worker, a mandated role in every center, is theoretically responsible for patient evaluation, care planning, and support, the reality is that most center staff are used in admissions, discharge planning, reporting and recordkeeping, and rarely have experience with transplants.

So how can these barriers be surmounted? Assuming that SRTR data can be immensely useful to patients, perhaps the challenge of translating it to the whole population, including the large number that I began by asserting are categorically unlikely to benefit, can be addressed as follows:

That a standardized curriculum be developed to train patient advocates, social workers, and transplant coordinators. Such training for peer counselors has heretofore focused upon empowering them to provide emotional support, and a very schematic view of outlining options, for fear of their providing misinformation. The level of patient expertise that resides in the ranks of the kidney patient organizations is such that mentors can far better help others to consider transplantation and "negotiate the system." In addition to patient peer mentors, a higher level of paid staff needs to be developed. "Certified Transplant Counselors."

In addition to a higher level of expertise suitable for medical social workers, nurses/physician assistants, or physicians, these persons would be trained specifically to access what is presently presented as the SRTR Patient Interface, and to translate the data in terms appropriate to the patient, while advising them, referring them, following up, and serving as a bridge between the patient and family, and the transplant system. In effect, what is needed to develop a stratum of ombudsmen, utilizing the front-end of the database as the AI component for computer-assisted counseling and advocacy.

Such a concept is not new. Where a class of patients has been systematically neglected, and in this case, I am referring to my own personal experience in the infamous "Willowbrook Case," in the 1970s, wherein a class action of residents in a state facility for the developmentally disabled sought relief for systematic abuse and neglect. As part of a court-approved consent decree, New York State established a Mental Health Information Service, to provide individualized representation and support to every resident of that facility. Whereas the consent decree mandated the establishment of community alternatives, the Information Service created a bridge between the goals of that decree, and the mechanics of insuring that every member of the class received appropriate care.

Today, in America, all metrics on kidney care clearly justify the assertion that the class of persons with advanced kidney disease are in a "Willowbrook-like" dilemma. From a policy perspective, the recent America's Kidney Health Executive Order recognized this, and CMS efforts have sought to address equity, allocation, incentivizing transplantation, and innovation. What is needed, in addition to expanding the pool of living donors and fast-tracking treatment options, is to formally create the apparatus to enable SRTR data to produce its intended outcome.

This will require funding, not just to compile and display evidence-based data, but to reimburse those who will enable patients and families to best access and use the data—a role that is presumably subsumed within current reimbursement, but which clearly does not happen often enough, as long as the time and effort involved is not supported through a discrete funding stream.    

Angela Cuozzo, Patient | 12/2/21

SRTR is new to me. I donated my kidney (nondirected), in 2010 and at that time, was not aware of this organization. It would have been a valuable resource to me in my research on being a living donor. The data is robust and I would think that this resource is a great tool in making decisions regarding the transplant centers available when becoming a living donor. However, all the data in the world that is made available to living donors prior to donation does not solve the problem of post donation follow-up statistics. I know that I am biased, but I have found that my concern is valid and prevalent in the community of living donors. Donor follow-up and support is grossly lacking globally. 

Transplant Provider | 11/24/21

Transplant metrics have handcuffed the whole transplant community. Centers can take very little risk and it gets less and less every year due to the general risk averse approach. As 1-year patient and graft survival continue to increase (because of largely lower risk recipients), fewer and fewer patients can be considered as "good candidates." Patients with perfectly acceptable risk have a very real risk of being declined if a center has had a few unexpected deaths or graft loss. The simple fact that ANY death unrelated to transplant (including MVA, suicide, murder, etc.) is counted in these very few allowable events can be catastrophic to a center and to patients hoping to be listed.

Metrics need to identify a program functioning below a standard of care. Standard of care needs to actually reflect real world and not defensive reflex practice.

Risk adjustment needs to account for ALL risk—not just what "most centers" are exposed to and not based on even just the risk averse cohort currently undergoing transplant. Currently someone with skin cancer gets the same risk adjustment as someone with CCA or other cancers.

Transplant metrics need an overhaul and get back to a patient focused approach—with a focus on providing lifesaving transplant to as many who would benefit from such a procedure.

Elizabeth Boehnlein, Transplant Provider | 11/23/21

We are hearing from our staff that patients are uncomfortable with all of the personal questions we are asking them. Pretransplant, the biggest issue is around citizenship, functional status, work status, and education history. Posttransplant, it continues with functional status as well as work status for the first 5 years. We are wondering if you already have an education document focused on these topics for patients that can be shared? Thank you!

Transplant Provider | 11/17/21

Please stop publishing metrics that rank programs based on statistical differences and not CLINICALLY RELEVANT differences. It hampers innovation and makes programs risk averse. There is no clinically meaningful difference between 97% and 94% 1-year survival (often the difference being 1 or 2 patient outcomes).

James Gleason, Patient | 11/15/21

Both as a heart recipient out 28 years and as president of TRIO (Transplant Recipients International Organization), I am very interested in supporting this effort in every way possible. I look forward to the July 2022 conference and plan to attend if invited.

Transplant Provider | 11/1/21

Interested in LOS index.