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Transparency in Program Selection

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Background

This paper outlines the ethical principles that support providing patients with program-specific information to enable them to select the transplant program that best meets their needs. It supports transparency, autonomy, and shared decision-making within the transplant system through an ethical analysis.

The OPTN Ethics Committee provides examples of how increased program-specific, patient-centered information is core to the ethical principles in organ allocation. The information needs to be accessible and meet the patient’s needs, and not just provided on the internet.

Greater transparency about pre-listing information can help patients find programs that are the best fit for the patient’s health needs, values, and preferences.

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Presentation

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Summary

  • Providing patients with information that is relevant to their clinical characterization, will allow patients to select the transplant center that best meets their needs
  • Transparency in program selection is upheld through the ethical principles of autonomy, equity, procedural justice, and utility

Anticipated impact

  • What it's expected to do
    • Create an ethical framework for the transplant community to improve the transparency of information patients use to choose a transplant program
    • Explain how information helps meet the patients’ needs
    • Help transplant programs improve equity and autonomy for their patients
    • Provide information that may strengthen the doctor-patient relationship
    • Outline the ethical principles to help future policy and data collection improvements
  • What it won't do
    • There are no changes to data collection based on this paper
    • There are no changes to policy based on this paper
    • There are no changes to allocation based on this paper

Terms to know

  • Autonomy: The ethical principle of autonomy refers to one’s ability to be self-directing, decide what happens to oneself in the future, and the ability to be a part of decisions regarding one’s own medical treatment.
  • Equity: The ethical principle of equity refers to removing barriers in access to transplant so that those with fewer resources still have equal access to information on transplant programs.
  • Procedural justice: The ethical principle of procedural justice ensures a commitment to treat cases similarly, transparently, and predictably.
  • Utility: The ethical principle of utility refers to creating the most benefit to the transplant community (i.e. promote graft survival, reduce waste, improve efficiency).

Click here to search the OPTN glossary

eye iconComments

Sue McDiarmid | 10/03/2022

As a pediatric liver transplant physician I support the intent of White Paper on Transparency in Program Selection. Whereas I value and appreciate the Ethics Committee's work on this topic I feel strongly that this important work can be enhanced by recognizing the special considerations required for pediatric patients. The White Paper considered four core ethical principles in support of transparency in transplant program selection. In the context of my remarks I would like to focus on autonomy and equity. The first of these is autonomy. Clearly the pediatric patient does not have their own autonomy but must rely on the decision making of their legal guardians – most often their parents. Whereas autonomy in decision making for the guardian of a child can be supported as a concept – there are occasions when the ‘best interests’ of the child may not be supported by their guardian. In the context of transplantation and access to a transplant program, one example of this dilemma would be if a guardian made a decision to not allow listing for transplantation when the procedure was clearly indicated and supported by transplant professionals at the center or even multiple centers. The ethical principle of equity also has specific implications for pediatric patients – and age is a recognized risk for health disparities. Children eligible for transplantation across all organ types – often experience ‘undue disadvantage experienced by those who come from structurally marginalized communities’ – a circumstance driven by the socioeconomic circumstances of their guardians. As well – another problem with ‘equity’ of access to organs is the frequent need to ‘size-match’ donors and pediatric recipients. This can severely limit what donor organs are acceptable for a given child’ size. In this context it is critically important that caregivers are educated appropriately how individual centers try to improve access to donation for pediatric candidates. A very important example for pediatric liver and kidney transplant candidates is knowing whether a given program offers living donor transplantation. Other surgical innovations that might overcome the size problem are also important – for example for pediatric liver transplant candidates whether a center is experienced in the utilization of split liver grafts is highly relevant. Caregivers need to understand that access to technical advances and pediatric and surgical and medical expertise can have direct effects on reducing wait list mortality for pediatric patients – which remains unacceptably high especially for small children awaiting liver, intestinal, heart and lung transplants. We ask that the Committee to consider adding a fifth example to the White Paper exemplifying concepts particularly relevant for children. Caretakers of children eligible for transplantation require additional educational and ‘personalized’ resources to help them assess the centers they may be referred to. Many pediatric transplant programs are quite small, making the published performance data difficult to interpret. The White Paper well describes the ‘complicating question of unintended side-effects of publishing data’ – and using the specific example of pediatric programs would be helpful. As also well noted in the White Paper, ‘accessing versus understanding information’ has particular ramifications for pediatric patients who must rely on the ability of their care givers to make informed decisions on their part. To be considered is the educational level of the caregiver, and very importantly any language barriers that would disadvantage the caregivers understanding. The onus is on transplant programs taking care of children to develop the resources to anticipate the best way to meaningfully educate caregivers so they can best advocate for their children. With some specific revisions addressing the special needs of children - this document can be inclusive of all transplant candidates. This would allow the White Paper to better achieve its stated goal ‘to provide the OPTN Board with an ethical framework when developing solutions aimed to improve patients and caregivers decision making process when faced with selecting a transplant center…….” Respectfully submitted S.V. McDiarmid MD Past President UNOS/OPTN

Calvin Henry | 09/29/2022

I emphatically support this paper and think it is essential for transplant programs to make information, especially acceptance/exclusionary criteria, readily available and transparent to help guide patients in making an informed choice about their healthcare. Having this type of information accessible would certainly make an already difficult process easier for the patient and, in cases, save lives. I personally could have benefitted from having access to program-specific exclusionary criteria at the time I was working to get waitlisted. My extended search led me to multiple transplant centers in 7 different states without guidance or much information and was definitely an arduous process. By the time I finally found a program that was willing to list me, my physical condition had greatly deteriorated and I was given approximately 3 months to live. The specific circumstances of the experience may have been unique for me but, unfortunately, the experience itself is not for many others. I was fortunate to have access to the resources that were necessary to save my life but others have not been so lucky, so time involvement in searching for a program does matter. Socioeconomic factors, adequate insurance, and proximity to transplant programs are among the myriad hurdles in the way of access to transplant. Policy developed from this paper will have an unmistakable and positive impact on patients who lack the resources necessary to efficiently find the type of health care that would work best for them and save lives. I realize the concern of transplant centers in providing information that they feel may potentially overwhelm a patient or need context in order to understand. I would urge in leaning toward ‘more rather than less’ and also urge that UNOS collaborate with these centers in providing information in a standardized and understandable way. Some information that I think would be helpful in decision-making would include: BMI cutoff * Current/prior mental health issues * Insurance frequency of coverage * What organs will be accepted/rejected on my behalf * Is a hospital transplant support group available * Automatic exclusions (cancer, abnormal function of other organs, conditions, etc..) * Rate of organ offer rejection * Average waitlist time for my organ at the transplant center * Does pain medicine need to be D/C prior to listing * Is intellectual disability an exclusion * Minimum amount of caregivers needed * Do caregivers need to be present during initial evaluation * Does the center require the patient to have a certain amount of cash on hand prior to listing * Does the center require long term prednisone use (some do not) * Is English speaking a requirement * Where does the program rank in number of transplants performed for the organ I need * What is the minimum proximity/driving time required between the program and my residence * Does the program require patients to stay in a “halfway house” after hospital discharge post-surgery * What specific innovations/care techniques make your program a superior choice compared with others * 10-20 year outcomes based on graft success (especially important for pediatrics) * What is the program’s rate of re-transplant for my organ * Although not currently well defined, the program’s patient quality of life post-transplant is important and data that would be useful * What specific advanced therapies are being used or researched by the program for post-transplant rejection

UC San Diego Health Center for Transplantation | 09/29/2022

The UC San Diego Health Center for Transplantation (CASD) appreciates the opportunity to provide public comment on the white paper on Transparency in Program Selection. We recognize the National Organ Transplantation Act and the OPTN Final Rule prioritize equity in access to transplants and commend the work of the community and committees in developing systems and policies that have resulted in significant progress in this arena. We do however, have significant concerns about the recommendations put forward in this paper. Not only do the Center for Medicare and Medicaid Services (CMS) Conditions of Participation already require transplant programs to educate patients on a variety of elements prior to the initiation of their evaluation §482.102(a)(1)-(8) but this white paper fails to recognize the complexities of transplant center operations including the limitations erected by insurance providers and the nuances of building a meaningful patient-provider relationship. With regards to the feedback explicitly requested: • Do patients and transplant professionals think that it is important to share program specific listing criteria prior to transplant evaluation? This paper appears to assume that programs are simply receiving referrals and not conducting any level of pre-screening with regards to insurance status or clearly documented absolute contraindications to transplant prior to initiating the evaluation process and that if such a barrier to transplant is identified during the referral phase, that that information is not communicated back to the patient saving them the time, energy and resources that would be required to pursue evaluation. Selection criteria can be complex, nuanced and evolving based on a center’s experience; there is significant risk for misinterpretation by referring providers in the community as well as patients, which is likely to result in a decrease in otherwise appropriate referrals to transplant centers. So while we do support and comply with the Center for Medicare and Medicaid Services (CMS) Conditions of Participation §482.102(a)(1), which require programs to ensure a patient understands all that is involved in the evaluation process as well as all possible decisions regarding wait listing and transplantation that could be reached as a result of the evaluations, we would not support additional mandates for centers to share their written criteria prior to the initiation of evaluation, absent a request (which may be made at any time) as required under §482.90(a)(4). Pursuing policy development in this area risks creating an additional burden for programs without addressing the root problems of social injustice and the lack of access to needed care. If the Committee chooses to pursue this concept, we would highly recommend that alternative avenues to the development of patient facing materials be championed either by the OPTN or the SRTR. This seems most reasonable particularly in light of the fact that both organizations have ready access to data that would address many of the topics that patients reported wanted to learn more about but which are not currently included in the program specific reports. In fact, we would support either organization in the development of more comprehensive program specific reports as we agree that context is important, particularly with regards to outcomes. • What best practices have transplant programs developed for increasing transparency? Applying the principles of patient-centered education, the transplant teams at CASD have developed and implemented a robust patient education program. While all patients are delivered the same baseline education, the team continually assesses each individual patient’s pace for learning, level of understanding, opportunities for misunderstanding and the need for re-enforcement to ensure that they have the information necessary to participate in medical decision-making throughout their transplant journey. This is done with the use of in-person or video translators to educate and consent in their primary language. We have established patient support groups and donor symposiums where pre and post-transplant patients and living donors can connect and share their stories. We do recognize the inherent value to many of the examples of patient requested information noted in Table 1-1 and have without question, provided that information to patient’s who have inquired as well as leveraged them in marketing and public relations. This after all, is an essential component of building a reputation in healthcare, reputation-building behavior fuels healthy competition and healthy competition drives further innovation in patient care. Do clinicians/transplant professionals think that think information, shared with patients, would strengthen the doctor-patient relationship and/or provide better care for patients? Many of the examples of patient requested information noted in Table 1-1 are valid points for marketing and public relations and may in fact strengthen both the program’s reputation and the patient-provider relationship. For example, a patient may feel a greater sense of trust if they ask and are answered how many years the center has been performing transplants, the medical and surgical teams training and years of experience, what innovation is being driven by the program, acceptance practices, transplant rates and subsequently, more details regarding outcomes beyond the 1 year patient and graft survival rates. However, mandating that a center provide this information prior to the initiation of the evaluation risks undermining the natural development of a solid patient-provider relationship. Patients must have the opportunity to assess the provider (or team) willingness to include them in the decision-making process, to provide them with information that uniquely interests them and to explore their goals of care together. Simply overwhelming a patient with a list of facts is not patient-centered care or supportive of autonomy.

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OPTN Transplant Administrators Committee | 09/29/2022

The Transplant Administrators Committee thanks the Ethics Committee for their white paper. A member noted that depending on the organ, geographic proximity to programs leaves few options for where a patient should list. Patients are also affected by insurance plans, financial barriers, and clinical situation. The member voiced concern that the transparency of transplant centers that might best suit the patient for listing criteria might not actually be a viable option for the previous stated reasons and this could frustrate patients more. Another member noted that for pediatric lung transplant there are only eight programs to choose from, which provides limited selection. Members worry that providing patients with too much information may overwhelm patients and reduce the amount of information they retain. A member explained being transparent about program specific criteria can be difficult. Centers use broad criteria to not limit themselves. There should be better education on the types of decisions patients will need to make when selecting a program. The member discouraged the requirement that centers would have to disclose legal information around center policy. The member suggested programs share their outcomes on their website and make patient-friendly education materials rather than providing a large amount of detailed information. Members emphasized that it is important to share the practices of a program, their acceptance data, and their criteria for listing a patient.

American Nephrology Nurses Association (ANNA) | 09/29/2022

ANNA supports. We agree with transparency and the ethics of providing patients with program-specific information to help guide their program choice. However, sometimes this is irrelevant and out of their control if insurance dictates which program the patient must go to for transplant.

American Society for Histocompatibility and Immunogenetics (ASHI) | 09/28/2022

The American Society for Histocompatibility and Immunogenetics (ASHI) and its National Clinical Affairs Committee (NCAC) strongly supports transparency in program selection. Patients and donor families should have the ability to research and select a transplant program based on their unique needs.

National Kidney Foundation | 09/28/2022

The National Kidney Foundation thanks OPTN for the opportunity to provide feedback on Transparency in Program Selection. Please review our attached comment letter. Thank you.

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Cystic Fibrosis Foundation | 09/28/2022

Please see the attachment for comment from the Cystic Fibrosis Foundation and individuals of the CF Lung Transplant Consortium

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Region 6 | 09/28/2022

Sentiment: 3 strongly support, 12 support, 3 neutral/abstain, 3 oppose, 0 strongly oppose | Comments: During the discussion one member asked if the committee was aware of how many patients have a choice of where they are listed due to Medicaid funding, health insurance, family situations, etc. Other attendees agreed with the sentiment to provide patients with more information, but added that during the evaluation, centers are often able to provide education to patients about some of the listing criteria and what they could change to meet the criteria. Another attendee agreed and added that program selection standards are not always an automatic decline and releasing the standards could limit patient’s evaluation options. One attendee commented that the initiative is well intentioned but implementation is unclear and may have potential for deceiving patients in not making the best decision for their health. They added that there is no mention of primary/referring nephrologist involvement which should be an essential team member in the process of transplant evaluation/selection and overcoming barriers to transplantation. Another attendee commented that transparency very important when trying to get away from implicit biases and gaining trust.

OPTN Living Donor Committee | 09/28/2022

The Living Donor Committee thanks the OPTN Ethics Committee for their efforts in developing this white paper, Transparency in Program Selection. The Committee supports the proposed white paper and emphasizes the importance of transparency, and to expand the transparency to living donor selection. The Committee suggests that potential living donors may benefit from transparency in transplant programs’ candidate selections as well as living donor exclusion criteria, as those guide the potential living donor in their decision to donate and where to do so. Additionally, the Committee agrees that transplant candidates may benefit from transparency in living donor programs so that they may select the transplant program best suited for themselves and potential living donors. The Committee suggests the white paper utilize a different terminology for paternalism. The Committee agrees that transplant programs need to provide basic information so that transplant candidates are not reliant on referring physicians to make decisions and have more autonomy over their healthcare. The Committee supports increased transparency on the ability for transplant candidates to self-refer and multi-list.

Region 10 | 09/28/2022

Sentiment: 2 strongly support, 9 support, 2 neutral/abstain, 1 oppose, 0 strongly oppose | Members of the region are supportive of the white paper, but several members in attendance noted that the details and operational nature of the white paper is not clear in the document. Transparency about listing criteria is a good idea but many of those are patient by patient decisions not bounded by a single policy. In addition, any initiative like this should emphasize that access to any transplant program is more important than choosing between programs. Whether or not the community can accomplish similar goals in expanding access and patient autonomy through collaboration or education, rather than by publishing more nuanced listing criteria, is debatable. Several members noted concern that if programs are required to publish definitive listing criteria, then insurance companies can use that information to deny coverage for patients if the patient does not meet the specific criteria. Some fear that this would inhibit patient autonomy. It was noted that a program’s listing criteria is often subjective on a patient by patient basis. Another member stated that the information provided by the transplant programs requires context. For example, small volume programs may have better survival rate, but the candidate may be more likely to actually receive a transplant at a neighboring center with a higher transplant volume. The white paper also needs to define when this information is shared with the patient. If the information is shared after being referred to a transplant program, the patient may not be able to transfer to another program due to resources or insurance constraints. Another member inquired as to what information programs should share with patients given that the patients who are most engaged with the transplant programs are typically well informed and have resources to attend focus groups. The member fears that underserved patients will not have their opinions solicited. Another member highlighted the work that SRTR has been doing with their Task 5 initiative mirrors what is being discussed in the white paper. Instead of duplicating efforts, the OPTN should work with the SRTR to develop helpful resources for patients. Another member noted that there needs to be clear guidelines on what information is shared with patients in order to prevent bias from programs depending on what information they share. From the patient’s perspective, it was noted that the most important information for a patient is to know which programs would be unwilling to accept a given patient, and what their quality of life will be after transplant. The most important thing is to make sure patients have access to a transplant.

OPTN Data Advisory Committee | 09/28/2022

The Data Advisory Committee thanks the Ethics Committee for the opportunity to provide comment on their white paper Transparency in Program Selection. The Committee is supportive of this paper overall, noting that many patients’ knowledge of the variation in referral, evaluation, and listing practices between programs is currently opaque. It was suggested that the white paper be distributed to pre-waitlist clinicians performing evaluations in order to educate the subset of patients who were not referred for transplant following evaluation. The Committee members asked about the potential for validating what a program’s actual listing criteria are in comparison to what they say they are. It was also suggested that the Ethics Committee determine what data is already being gathered by the Scientific Registry of Transplant Recipients on donor characteristics being transplanted at the program level. The Committee agreed that the starting point for creating equity amongst program selection was collecting candidate referral, evaluation, and listing data. The white paper is an important first step in outlining the rationale for data collection on improving transparency in program selection.

OPTN Pediatric Transplantation Committee | 09/28/2022

The OPTN Pediatric Transplantation Committee thanks the OPTN Ethics Committees for the opportunity to provide feedback on their white paper. The Committee provides the following feedback: The OPTN Pediatric Committee supports the Ethics Committee’s effort to increase transparency in program selection. An important factor to consider when selecting a liver transplant program is the program’s willingness to perform split liver transplantation and living donor liver transplantation, which could impact a pediatric candidate’s ability to be transplanted at that program. The Committee noted that it can be difficult for pediatric candidates to choose between different transplant programs due to there being significantly fewer pediatric transplant programs. In addition, the Committee encourages the OPTN Ethics Committee to consider ways to provide families with patient-focused information that is relevant to pediatric candidates prior to transplant evaluation.

OPTN Patient Affairs Committee | 09/28/2022

The Patient Affairs Committee thanks the OPTN Ethics Committee for their efforts on developing the white paper, Transparency in Program Selection. The Committee strongly supports providing information to individuals to aid in their determination of which transplant program best aligns with their needs. The Committee holds that greater transparency is to the benefit of all transplant candidates. The Committee notes that individuals are likely making decisions based on inaccurate or insufficient amount of information, due to the low level of transparency that transplant programs currently provide to the public. The Committee notes that listing criteria, outcomes metrics, and transplant rate volumes should be made readily accessible to patients by all transplant programs. The Committee recognizes that there is a threshold of providing too much information to individuals, but the current amount of information provided is so minimal that it may be unnecessary to worry about the unintended consequences of oversharing information. The Committee recognizes that shared decision-making is necessary in a clinical setting and urges the medical community not to undermine the ability of individuals to understand information. The Committee states that it should not be assumed as to when an individual is ready to take in information as every transplant candidate is different, and that information should be delivered throughout the transplant journey, when an individual is ready. The Committee emphasizes the importance of providing access to this information to caregivers and primary care physicians/referring providers in addition to transplant candidates. The Committee emphasizes that transparent information regarding general exclusion criteria and organ-specific exclusion criteria are necessary for transplant candidates to be knowledgeable about which transplant program would accept them. The Committee suggests that transplant programs could publish ‘personas’ for the general public to understand what type of individual has a successful transplant at that transplant program, but acknowledges this could deter patients who don’t fit the ‘typical’ candidate profile. The Committee also suggests that transplant programs publish their strategic objectives in order for individuals to seek transplant programs where their goals align. The Committee also holds that transplant programs should be transparent regarding whether their waitlist population matches their transplanted population. The Committee notes that insurance coverage for transplant evaluation varies, which exacerbates the need for transparent information to aid in program selection, since sometimes insurance will only cover one transplant evaluation. This is problematic when individuals undergo an evaluation to find out that the transplant program does not list someone with their diagnosis or comorbidities. The Committee notes that individuals will be afforded more autonomy in their decision-making if transplant programs are transparent about their listing criteria. The Committee looks forward to discussing next steps on how to increase transparency in program selection and urges the Ethics Committee to pass on any feedback they receive regarding actionable next steps. More detailed responses from the Committee members are submitted as an attachment.

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American Society of Transplant Surgeons | 09/28/2022

The American Society of Transplant Surgeons is pleased to provide the following feedback to the OPTN Ethics Committee. Do community members think that it is important to know what criteria transplant programs use to evaluate patients for listing? Yes. What are other factors that would be important to you in selecting a program? Besides medical criteria (e.g., absolute contra-indications) it would be important to report their criteria for social support and compliance. What best practices have transplant programs developed for increasing transparency? Programs have reported criteria objectively in program policies and updated them annually. However, we are hesitant to label these as “best practices” since no transplant program has the “best” practice. It would be most informative to use the current demographic data already in the current public Scientific Registry of Transplant Recipients (SRTR) program-specific reports (PSRs) that describes the waiting list candidates and transplanted patients at each program. This publicly available document gives patients access to the general idea of a particular center’s actual practice. Do clinicians/transplant professionals think this information, shared with patients, would strengthen the doctor-patient relationship, and/or provide better care for patients? ASTS has no comment on this portion.

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Southeastern Kidney Transplant (SEKTx) Coalition | 09/28/2022

Please see the attachment for comment from the Southeastern Kidney Transplant (SEKTx) Coalition.

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NATCO | 09/28/2022

NATCO appreciates the opportunity that the OPTN Ethics Committee has provided to offer the following feedback regarding Transparency in Program Selection: Other factors important for patients when selecting a transplant program are: Patients take many factors into consideration when selecting a transplant program, including geographic location/proximity, accessibility to the facilities, and insurance acceptance/participation. Program outcomes (real-time data in addition to SRTR data), number of transplant procedures performed, and team member composition as well as experience is also important. Lastly, average wait times as well as length of stay for each patient population should be made available. Do patients and transplant professionals think that it is important to share program specific listing criteria prior to transplant evaluation? It is important that transplant programs share their listing criteria in readily available formats such that prospective patients and their families can determine the best fit(s) prior to beginning an evaluation. Prospective patients should have the opportunity to research multiple programs to determine which one(s) best meet their individual needs such as age limits, BMI requirements, and post-transplant follow up requirements. Transplant professionals can also benefit from pre-evaluation disclosure of listing criteria as it can help manage patient/family expectations and assist programs upfront in guiding patients to their best-matched program(s). Educational resources accessed through program websites can help patients access this information prior to seeking an evaluation. What best practices have transplant programs developed for increasing transparency? Many programs post their listing criteria and educational material/videos on their websites for the public to access. Additionally, there are programs that include listing criteria in their outreach efforts, through educational sessions with referring providers, and through community/patient engagement opportunities. Some of the methods of providing transparency directly to patients include sharing listing criteria at the time of Informed Consent, or by providing this information electronically via the electronic patient portal prior to evaluation for the patients’ consideration. Do clinicians/transplant professionals think this information, shared with patients, would strengthen the doctor-patient relationship, and/or provide better care for patients? Doctor-Patient and Provider-Patient relationships can be strengthened through transparency at each step of the transplant process as this allows for consistent, straight-forward and clear information sharing/communication. Frequent frustrations expressed by patients center around being put through lengthy evaluation processes, only to be declined for reasons that could have potentially been addressed up front. Transparency early on could help eliminate this, and other sources of, frustration. Approaching Doctor-Patient relationships with transparency allows patients to feel a sense of autonomy and inclusion throughout their transplant journey. In addition, transplant professionals provide the best care when they can establish trust with their patients. With information technology readily available, it should not be difficult for every program to enhance transparency by sharing information with patients and their families.

Society for Pediatric Liver Transplant | 09/28/2022

The Society of Pediatric Liver Transplantation (SPLIT) and the North American Society for Gastroenterology, Hepatology and Nutrition (NASPGHAN) support the Ethic’s Committee White Paper on Transparency in Program Selection. It is important that we provide patients and their caregivers information regarding transplant evaluation and waitlisting process early on in the pre-evaluation stage. It is of particular importance for our pediatric patients that the options of living donation, including details on whether the center performs living donor or not, and how often this is done at the center (e.g. % of all transplants). Other surgical innovations that might overcome the size problem are also important – for example for pediatric liver transplant candidates whether a center is experienced in the utilization of split liver grafts is highly relevant. Caregivers need to understand that access to technical advances and pediatric and surgical and medical expertise can have direct effects on reducing wait list mortality for pediatric patients – which remains unacceptably high especially for small children awaiting liver, intestinal, heart and lung transplants. We ask that the committee consider including living donation as one of a fifth example in the paper.

Region 8 | 09/27/2022

Sentiment: 2 strongly support, 14 support, 0 neutral/abstain, 1 oppose, 0 strongly oppose | Region 8 supported the paper and its effort to increase transparency in a patient’s selection of a transplant program, and had several suggestions for how this project can firm up during application. A member supported and inquired if there is a place where a patient can compare one center to another. A member asked if this paper will inform a patient’s ability to get access to transplant. While a member supported the idea of increase in transparency for patients, they pointed out that requiring centers to provide information could increase the gap in access to transplantation if patients choose larger centers over smaller centers. Another member explained that his program supports transparency in program selection but expressed concern over leading patients to believe they have choices in transplant center when their insurance doesn’t provide choice or the patient is limited in his/her ability to travel. A member pointed out that patients may not know what questions to ask or criteria to look for when choosing a center. Another member expressed her center’s concern that the white paper doesn't discuss a mechanism for patients to ask questions about criteria that are confusing or ambiguous. The member suggested that a pilot program be launched to see if this concept with patient focus groups might be valuable prior to national implementation. A member explained that the lack of access to data about patient evaluation and listing practices limits the ability of a patient to make informed choices about where to seek care. The member suggested to implement mandatory and consistent transparency requirements for all transplant programs with a minimum requirement of patient evaluation and listing criteria data. The member suggested that providing access to data alone is not sufficient if the data is misinterpreted or not used in context. The data should be available through clinicians/referring physicians/social workers so there is not the unintended consequence of widening the gap of access to transplant to already marginalized populations. A member pointed out that transplant centers need to be transparent with individuals by sharing their selection criteria so the patient can make the best choice for him or herself. The member suggested to provide education to patients at a level the patient understands. A member asked: (What information does the Ethic Committee recommend that transplant centers share with patients? It is required that transplant centers share its SRTR data and selection criteria? Is this also leading to informing a patient if their name is on the match run but the accepting physician declines an offer because it wasn’t a match?) A member pointed out that insurance companies need to allow patients’ multi-listing opportunities. A member explained there are many patients who never gain access to the waitlist, even though the patient needs and would benefit from a transplant. Those patients deserve transparency too - to know who will be excluded based on payor, identification support caregiver, etc.

Association of Organ Procurement Organizations | 09/27/2022

Please see the attached comment from the Association of Organ Procurement Organizations

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International Society for Heart and Lung Transplantation | 09/27/2022

Please see attachment for comment from MCS IDN.

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Region 7 | 09/27/2022

Sentiment: 3 strongly support, 6 support, 1 neutral/abstain, 1 oppose, 1 strongly oppose | Overall, members of the region support the white paper and noted that it is critical for programs to share their listing criteria with patients prior to starting a transplant evaluation. One member noted that it would also be helpful to have similar information available for living donors as they explore their donation options. Another member stated that they agree with the need for and benefits of transparency to allow patients to make informed decisions of where they wish to be listed for transplant. However, which center-specific criteria that will be shared is really the key underlying question. Important metrics that would be useful is offer acceptance rates and waiting list volumes, which are not currently provided. These two metrics, added on to mean waiting times which are available, would allow patients to further assess their likelihood of the center accepting good organ offers for them that other centers are accepting but their center might not be accepting. A question was posed about whether program-specific recipient listing criteria should be made available. The member notes that these are too generic and too similar among centers to be meaningful or useful. Or, if very specific, they would either be too sophisticated or specific for patients to understand. Also, these may continually change over time and may be very specific for individual patients. These decisions are patient-centered and specific and are made by multi-disciplinary teams that are very specific to each individual patient. And, if a program goes outside these criteria or doesn't accept a patient where they meet all the criteria, there is potential legal jeopardy. The member would not be in favor doing this as making program-specific listing criteria available may negatively impact the doctor/patient relationship nor lead to better care for patients. Another member noted that this proposal lays out strong arguments for requiring/encouraging increased publication of information that centers use to make decisions concerning patients. In considering this white paper, they thought about it from the patient and the referring physician’s perspective. From the patient’s perspective, ultimately, the decision to use or not use a center is the patient's. From experience, for a patient not listed, it will take about three months minimum for a listing decision—in a non-emergency situation. For a patient to go through all of the steps in a listing process (scheduling, mental assessment, battery of physical assessments, labs, consolidated assessment, board decision, and listing). If the patient is a candidate for a living donor, add an additional three to six months to the process for a decision on each candidate-donor and another month or two for scheduling the surgery. If the patient did not select the program that is the right fit for their situation, money, effort, and most importantly, time is wasted. To go to a new program, the process will start over from the beginning again. From the referring physician’s perspective, often, a specialist who is following the patient is referring the patient to a program and will track their progress. That referring physician will want to ensure that they are sending the patient to the right center when there are multiple choices. A physician making an informed decision would be obviously advantageous to the patient. Some decisions might be easier than others with good information. An example of an easier decision from the white paper was looking at how long a patient has to have abstained from alcohol before being listed at a center. In other cases, the situation could be more complex making the recommendation for an appropriate center more difficult. One example is that a patient could have an autoimmune disease, like Primary Sclerosing Cholangitis (PSC), where centers may have completely different approaches concerning how they view the outcomes and urgency of the patient. PSC increases the probability of undetectable cancer in the bile duct. Centers could prioritize a patient with PSC much differently. How would a patient make an informed decision in this case without an informed provider making a recommendation? How would a referring provider understand a center's approach to PSC without the experience of previously having a patient with this disease? If the referring physician was armed with the information on the center's approach to particular diseases, he or she would a better advocate for the patient, even without previous experience with the specific disease. Some basic information should be required for publication from all programs (organ specific and general info), but a deeper depth of information requirements should be encouraged. At a certain point, publication requirements could become onerous for a center to track and publish if there were too much depth or breadth in the requirements. Programs should be required to publish certain helpful information (success rates, listing timelines, listings converted to surgeries, major patient non-acceptance criterion, program strategic goals). Centers should be highly encouraged to publish information that is more esoteric or unique but that could still be very useful in decisions: Do they take high-risk patients—if so, what conditions and limitations? What is their approach to rare diseases? Do they accept organs with certain infections? Do they have any specific areas they feel they differentiate in their focus?

American Society of Transplantation | 09/27/2022

The American Society of Transplantation (AST) offers the following comments for consideration in response to the white paper distributed for public comment, “Transparency in Program Selection:” In general, transparency and sharing of transplant program selection criteria to the public is important. This paper aligns with various other OPTN projects to increase transparency, equality, and efforts to reduce organ discards, and with the recent NASEM Report. The proposal once implemented will allow patients to navigate the listing process at different transplant centers and choose the ones they think would provide them the best chance to be transplanted. Patients have the right to understand their realistic chances of getting a transplant and not just getting listed at a transplant center, and the white paper will facilitate this process by establishing the ethical principles that support center practices to become more transparent and provide their listing criteria with regards to BMI, frailty, sensitization, and alcohol use. The other factors that might be important for the patients in selecting a program are center’s policies on substance abuse, prior non-compliance, type of insurance, sickle cell disease, hypercoagulability disorders, incarceration/probation status etc. Centers must use every opportunity to educate the dialysis centers, referring nephrologists, and community about their listing practices to improve the trust between them. Being honest and transparent about their practices will encourage centers to undertake process improvement and ask for more resources, if necessary, from the hospital to transplant patients with complicated issues. It is important to recognize the selection of transplant candidates is quite nuanced, and many times involve details of their candidacy that cannot be easily delineated. These decisions often take detailed committee discussions, and the community should not risk oversimplifying this process. It is of utmost importance that this white paper recognizes that transplant centers must work to ensure institutional racism does not play a role in preventing access to transplant in historically underrepresented groups. Additionally, programs must be sensitive that not all candidates have a legitimate choice, due to geography, insurance, etc. A particular concern projected is in the presentation of selection criteria and data, and the potential for it to inadvertently be communicated in a manner that discourages potential candidates from seeking transplantation. Health literacy may also be an important factor to consider with relation to data/information presentation for public consumption and measures should be taken to ensure the language/format utilized is easily understood by all patients. In the case of pediatric transplantation centers, it is also important to consider the developmental appropriateness of presenting this data/information, adjusted for consumption by parents and pediatric patients. Information described in the examples provided in the proposal could lead to extensive requests for information that may be difficult not only to understand but also to provide information towards on an ongoing basis. A plan for funding or assistance may need to be implemented to ensure programs are successfully able to fulfill these recommendations. For reasons raised and acknowledged in the document, the AST notes that excessive information is not necessarily benign and must be carefully presented to meet the appropriate goal of transparency for the benefit of patients. Excess data, even for a transplant professional themselves seeking an organ, are too dense to be actionable. The AST cautions pursuing policy development in this area given an additional burden for programs. While improving transparency as a step towards access, it is also important to concurrently address the root problems of social injustice and the lack of access to needed care. The AST would highly recommend that alternative avenues to the development of patient facing materials be championed either by the OPTN or the SRTR. This seems most reasonable particularly in light of the fact that both organizations have ready access to data that would address many of the topics that patients reported wanting to learn more about but which are not currently included in the program specific reports. The AST would support either organization in the development of more comprehensive program specific reports as we agree that context is important, particularly concerning outcomes. Many of the examples of patient requested information noted in Table 1-1 are valid points for marketing and public relations and may in fact strengthen both the program’s reputation and the patient-provider relationship. For example, a patient may feel a greater sense of trust if they ask and are answered how many years the center has been performing transplants, the medical and surgical teams’ training and years of experience, what innovation is being driven by the program, acceptance practices, transplant rates, and subsequently, more details regarding outcomes beyond the 1-year patient and graft survival rates. However, mandating that a center provides this information prior to the initiation of the evaluation risks undermining the natural development of a solid patient-provider relationship. Patients must have the opportunity to assess the provider (or team) willingness to include them in the decision-making process, to provide them with information that uniquely interests them and to explore their goals of care together. Simply overwhelming a patient with a list of facts is not patient-centered care or supportive of autonomy.

Attachment

OPTN Histocompatibility Committee | 09/27/2022

The Histocompatibility Committee would like to thank the OPTN Ethics Committee for their work on this subject. The more informed patients are the better they can take care of themselves, and patients are entitled to a lot of information. It is particularly important for patients to know more about histocompatibility, and the role it plays in selecting candidates for transplant. Patients should be engaged and manage their expectations. Showing metrics to patients and explaining where they fit into those metrics will help the patient understand the transplant process. “What is the likelihood of finding a compatible donor?” This is the question the patient wants answered and we can help physicians answer it, as well as, likelihood of offers. Yet histocompatibility can be difficult because it is generated in such a program specific fashion. CPRA patients look different at each center, so what metrics should be provided to patients so they can properly compare transplant centers? Perhaps it is showing success rate with highly sensitized patients because that does differ center to center. Some of our committee members do not believe this would be the best practice, but success rate of high CPRA of patients might be better. There were no further comments from the committee.

OPTN VCA Transplantation Committee | 09/27/2022

The OPTN Vascularized Composite Allograft (VCA) Transplantation Committee thanks the OPTN Ethics Committee for the opportunity to review their Transparency in Program Selection white paper. The Committee provides the following feedback: The VCA Committee asks the Ethics Committee to seek feedback from patients on important factors when selecting a transplant program. The Committee expressed concerns about how much time patients could spend at transplant programs in the early and post-transplant period and encourages the Ethics Committee to consider how far patients and their caregivers must travel. Regarding VCA, the Committee feels there may be challenges with sharing listing criteria ahead of time because VCA programs are unique and patient-specific. Additionally, the Committee feels that it is important for the patient to know the depth of experience of the transplant programs they are considering.

OPTN Minority Affairs Committee | 09/27/2022

The OPTN Minority Affairs Committee (MAC) thanks the OPTN Ethics Committee for the opportunity to review their Transparency in Program Selection white paper. The Committee provides the following feedback: The MAC supports the concept of the Ethics Committee’s white paper. The Committee noted that program availability should be considered an important factor for patients when selecting a transplant program. Members expressed concerns about program availability, as candidates living in rural areas may not have access to more than one transplant program. The Committee commented that these rural candidates could also experience insurance payer issues. Additionally, the Committee noted the variability amongst transplant programs’ listing criteria. The Committee recognized the risk of patients being unaware of expectations when accepting registration at transplant programs due to unclear listing criteria. The Minority Affairs Committee supports the Ethics Committee’s effort to increase transparency in listing criteria and patient autonomy.

Region 11 | 09/26/2022

Sentiment: 4 strongly support, 9 support, 1 neutral/abstain, 0 oppose, 0 strongly oppose Comments: An attendee stated that transparency is important and questioned if the offer filters previously discussed should be included. Another attendee stated that the specifics for an individual patient are complex and identifying what is most important for a specific individual is difficult to predict. They added that increasing the amount of information a program is required to share would increase the effort needed to educate the candidate at the time of evaluation.

Anonymous | 09/26/2022

We applaud and support the ethics committee in their endeavor to improve the autonomy of patients and transparency of information patients have available to make decisions in program selection. One ethical/transparency problem which transplant centers contend with is referring nephrologist bias, where they only refer to specific transplant centers, regardless of distance for the patient, transplant volumes, or transplant outcomes. Whether it is familiarity with a particular center, financial/affiliative motivation or other reasoning, we have experienced one nephrology practice which displays a strong negative bias against our center, referring to a single center over an hour further travel, 1/3 our volume, with a much lower transplant rate and lower patient/graft survivals. If they believe their patients are better served not at our program, there are multiple centers also an hour further travel than ours with similarly better outcomes than their chosen center, so their bias is NOT in support of their patient’s well-being. Many patients listen to their doctors, don’t question a referral, and do no further research about the centers available to them. As an example, we recently transplanted a patient who lives 10 minutes from our center. He’d been listed with a center over 60 minutes travel from his home since 2018 and had not received a single offer. He had not heard of us until starting dialysis in 2022, was referred to us by the dialysis unit in month 1; evaluated in month 2, listed in month 3, and transplanted in month 4. His renal function is normal 1+ month post-transplant. He never had a single offer from his original center. He was very upset he had been steered to the other center by his nephrologist and not told about other more convenient and arguably superior options. Understanding that referring nephrologists are outside the scope of the OPTN, this is an ethical issue that cuts to the heart of this topic. Should the OPTN mandate that patients be given a list of transplant centers within a certain radius of their residence or dialysis unit? One could develop a formula to provide a minimum number of centers to every patient in our broad and varied country, helping patients in making a vital and informed choice regarding transplant centers.

Anonymous | 09/25/2022

I strongly support this white paper in its goal to increase transparency in program selection. This policy is essential to increase equity in access to transplantation by mandating the monitoring of access to key steps in the transplantation process.

Lung Transplantation Committee | 09/23/2022

The Lung Transplantation Committee thanks the Ethics Committee for their efforts in developing this white paper. The Lung Transplantation Committee supports this paper as a concept. The Committee noted challenges in improving transparency on the criteria that lung transplant programs use to register patients for transplant, such as the small number of absolute contraindications to lung transplantation; the possibility that a patient may not be accepted for transplant due to a constellation of relative contraindications to lung transplantation, but would not have been ruled out based on any one factor; and the constant reevaluation of risks that transplant programs are willing to accept with patients. Several members described the dynamic nature of lung transplant criteria and their willingness to accept varying levels of risk factors. Several members also voiced concern about inequity between patients who will have access to this information and vulnerable populations that may not have access to this information. Members also highlighted the importance of making this information available to referring providers. The Committee appreciates that this paper shows what information should be provided to every patient and doctor by transplant centers. Members suggested that lung transplant programs should refer patients to other transplant programs that may transplant them if their own transplant program will not, and that the Lung Committee could provide guidance to lung transplant programs on improving transparency as a follow-on action to this white paper.

Region 1 | 09/21/2022

Sentiment: 3 strongly support, 3 support, 2 neutral/abstain, 0 oppose, 0 strongly oppose | Comments: One attendee commented that this is for everyone, including people who may only have one shot at transplantation because their insurance will limit the number of evaluations. Another attendee commented that this has to be done so that it benefits more than highly educated patients with the most access to health information. Another attendee suggested that other committees get involved to continue the momentum with additional projects or guidance. A couple of attendees commented about those patients who are too sick to travel and make a choice; the status of a kidney candidate is different from heart and liver. An attendee stated this is a compelling ethical review of why understanding and addressing access to transplant starts with access to the list and the transparency that patients should be provided as to how that works at transplant programs. Another attendee stated that this will be critical to provide health literacy/language/cultural/etc. based education to patients in order to avoid unintended potential inequities. The presenter responded the goal of this is to help patients make better decisions using data that is helpful to them.

Region 3 | 09/20/2022

Sentiment: 2 strongly support, 8 support, 4 neutral/abstain, 0 oppose, 0 strongly oppose | Comments: The region generally supported the white paper. Several attendees commented that patients are increasingly seeking data to support their autonomy in decision making. One attendee noted that this will be advantageous to patients when they are evaluating transplant programs and knowing criteria of listing center will save patients time and money. They added that it will allow patients to focus on center who can better serve them. One attendee commented that there is often nuance to program criteria and advocated for patients to be routinely referred to other centers if declined at one program. There was also support for patients having information about center volume, responsiveness of coordinators, patient’s perception of care and follow up. One attendee noted that ranking centers on transplant rates, access to transplant, access to the waiting list, outcomes on the list and post-transplant is complicated. While they supported transparency, they remained neutral about the white paper until more review of what is weighted and emphasized on any public facing system.

Region 2 | 09/13/2022

Sentiment: 9 strongly support, 12 support, 1 neutral/abstain, 0 oppose, 0 strongly oppose Members in the region supported the white paper, with one member noting the more transparency, the better. Another member commented that this will allow patients to be evaluated at programs where they will be considered. It was also noted, that in terms of transparency from kidney programs in regard to access to pancreas transplant that many patients do not even know that pancreas transplant is an option. These patients may wish to learn about that and be evaluated at a center that offers pancreas transplantation. Another member noted that it may be important for programs to share post-operation care requirements during the evaluation process with patients. For example, the amount of time a patient may need to stay in the area, how long they will be followed by their transplant program, and if they can switch to their local hospital following transplantation. Another member suggested that there should be consistency in patient communications with referring physicians. A tool could be developed for referring physicians if there are examples of helpful patient communications. Lastly, a member stated that if BMI is used in a program’s listing requirements that should be clearly communicated with patients.

Anonymous | 09/12/2022

Paper should more clearly explain what is meant by transparency. In addition to the data / statistics, what information are transplant programs expected to provide and where should this information be made public. Will there be a requirement for transplant programs to update this information periodically? How will OPTN help to ensure that programs are being transparent in the information provided? Will this transparency extend to include what individual centers consider for age cut-offs, BMI for listing, abstinence from which substances for how long? In addition, will other criteria specific to the center be provided to increase transparency. For example for lung transplantation, will programs specify if they consider patients with resistant organism (Mycobacteria abscessus); what is the center experience with dual organ transplants (e.g. lung-kidney, or lung-liver); should programs state areas of particular expertise and alternatively make it clear to patients at the onset if they do NOT have this expertise (e.g. centers with experience transplanting patients with scleroderma, those with expertise in combined CABG at time of lung transplant, urgent evaluation / bridging patients with ECMO to transplant, whether there is a Cystic Fibrosis Foundation Accredited Care Centers at the same site as the transplant program). The concept of this white paper is a good one, but we need more granular and specific examples of what is meant by these principles.

Region 9 | 09/12/2022

Sentiment: 4 strongly support, 5 support, 1 neutral/abstain, 0 oppose, 0 strongly oppose | Comments: Region 9 generally supported the proposal. One attendee commented that the patients want more transparency. Another attendee commented that there needs to be a pathway for programs to update their selection criteria seamlessly without having to update it in multiple places.

Amy Mann | 09/11/2022

 What are other factors that would be important to patients when selecting a transplant program? Transparency on recent failures, I.e equipment failures, unexpected or unexplained deaths immediately following transplant. I found out after my transplant that during the time I had a heart transplant, there were some serious failures going on with equipment and staff which led to the demise of several patients. (NBI Newark) It’s very difficult to select a program when you are dying. It feels like you are being sold a program. In addition to the usual binder full of information that patients receive, there should be a very simple, patient friendly brochure that is up-to-date (I.e in the last year) wait times based on blood types, body size, any unusual upticks in deaths, transparency about equipment failures or other factors that have affected outcomes. I also want to say that there cannot be true equity in choice due to limiting factors regarding insurance and social economical, cultural and educational status. There is a place here somewhere for patient advocates who are not affiliated e with specific programs and can help families navigate these challenges.  Do patients and transplant professionals think that it is important to share program specific listing criteria prior to transplant evaluation? Absolutely. Patients in need of transplant don’t have time to waste.  What best practices have transplant programs developed for increasing transparency? I had a heart transplant 4 years ago. All the information I got regarding programs was from the UNOS website, which was challenging to navigate. I can’t comment on program transparency best practices as I did not receive anything but a binder that outlined the process. (I double listed at 2 programs as I was declining rapidly. As I mentioned earlier, it’s important for Patients to have the most up-to-date data regarding wait times and unexpected deaths and equipment failure.  Do clinicians/transplant professionals think this information, shared with patients, would strengthen the doctor-patient relationship, and/or provide better care for patients? I’m not a transplant clinician, but from a patient perspective yes! Yes! Yes! We need to have a strong relationship with our physicians built on honesty and trust. Patients are with their physicians for the long haul throughout the rest of their lives.

Anonymous | 09/09/2022

Strongly support. But I agree with the opinion that transparency is important, but insurance and financial status of recipients is the major or important driving factor to affect the equity of organ transplant, unfortunately.

Region 5 | 09/08/2022

Sentiment: 11 strongly support, 11 support, 1 neutral/abstain, 1 oppose, 1 strongly oppose | Comments: A member suggested there should be data driven transparency and not transplant center driven transparency, since there is differing practices amongst transplant programs. Another member pointed out that the data should be objective and specific. A member supported the need to provide more outcomes information specifically about duration and quality of life. Several members pointed out that this topic arose at the SRTR consensus conference and supported the committee’s efforts to continue advancements in transparency and providing additional information to patients and donor families. A member pointed out that her program supports providing information patients need to be able to seek the healthcare that aligns with their personal goals. But the member pointed out a concern on the timing of when to provide this information to patients. She explained there is a concern about a patient misconstruing the information if it is not provided in appropriate context. A member pointed out that the OPTN should be mindful of the fact that CMS requires transplant centers to provide similar information at initiation of evaluation (as such, the member asked the OPTN not to create duplicative requirements). Another member suggested that the information could be given in a scalable manner – where, if a patient asked for a lot of information, the transplant center could provide it, and if another patient didn’t want as much information, the transplant center was prepared to provide less, all with the intention of developing a positive relationship that is patient specific.

Anonymous | 08/29/2022

As much as we talk about equity in transplantation, we will never have it until every recipient has the same insurance benefits. Insurance drives where a potential recipient can go for a transplant. I can have the world's best program, but patients local to me cannot access our program due to insurance restrictions on where they can go. This leaves rural patients looking at traveling 3-4 hours to get to a transplant center, and many of them cannot afford this and no longer pursue transplantation. In one fell swoop, insurance (or lack thereof) has removed autonomy (self-directed choice of transplant centers), utility (improved efficiency/waste reduction), procedural justice (treating like cases similarly), and equity. We keep asking transplant centers and OPOs to be more transparent but we have a more significant problem than transparency. Congress is telling the OPTN by the Final Rule that we must develop equitable allocation policies and promote patient access. In that case, they must start by providing the same insurance access to every patient who needs an organ.

Region 4 | 08/26/2022

Sentiment: 1 strongly support, 16 support, 2 neutral/abstain, 1 oppose, 0 strongly oppose | Comments: Region 4 generally supported this proposal. One attendee commented that in their experience as a patient, the kind of data patients need to know is basic. They went on to add patients need to know there are differences in centers and that some centers are more proficient in some areas than others. Another attendee commented that they were concerned that some of that data may funnel patients towards larger institutions and divert patients from smaller programs. Another attendee commented that patients need more transparency and this paper is a step in the right direction to increase available information. One attendee recommended extending transparency to living donor metrics such as if a program participates in KPD programs as well as living donor outcomes. Another attendee commented that much of the information specific to individual transplant centers is already disclosed by transplant centers or is publicly available through sites such as the SRTR or OPTN. They went on to comment that information such as a center's candidate acceptance criteria, unique qualities, etc. is updated annually during the UNOS/OPTN RFI process. They suggested that maybe the RFI could have a public facing site. Several attendees supported increased transparency. One added that requirements for post-transplant follow up are important for patients to know.

Milton Mitchell | 08/18/2022

Transparency is urgently necessary.

Dr. Phillip Williams | 08/16/2022

I would like to know if the Ethics Committee would conduct a survey on 1. Best Transplant Programs based on Organs Transplanted. 2. Should there be Rating System based on Patient’s outcomes. 3. List all Transplant Programs in States and Regions with best Benchmarks or Best Practices in the industry.

Sam Dey | 08/16/2022

I support Transparency in program selection. However, can the 4 mentioned ethical principles really be upheld, without proper health insurance coverage, across the board ? We have folks who are un insured, under insured and with various differrent insurance providers (in addition to Medicare/CMS) . How to remove those barriers in selection?

Rebecca Baranoff | 08/07/2022

One of the questions asked for feedback by the White Paper is - what other factors would candidates like to know when selecting a transplant program? As a recipient I am interested in what the outcomes look like for the transplant program I am interested in, specifically how many transplants are done in a year for the organ transplant I am interested in. I would want information about the success of the transplant program. And what physician specialists, surgeons and other staff make up their transplant department(s). I would also be interested in the program has a designated dietician on staff. Lastly, it is important to know how to get in touch with the program as a patient without needing a doctor to make a referral. Other questions I have about the whitepaper - 1. How would you change equity? 2. What ideas do you have about how to present information to patients in a way the patient can understand it?

Anonymous | 08/05/2022

I believe the idea for a more transparent approach to program outcomes and stats is important for those with the resources to shop around, but it only widens the gap for those that lack the resources for this kind of flexibility. Before we are able to give a fair look into every program we need to figure out a way to address the inequalities that our underserved and vulnerable populations have in accessing the programs of their choice. We continue to bring benefits to those with extra resources and not options for those that lack.

Kidney Donor Conversations | 08/04/2022

In support of providing more information & transparency to patients/families about ALL the transplant & donor options (not just at the center they are at). Living Kidney Donor Considerations for education: ways to donate (direct, paired, chain, non-directed, voucher) and information about the benefits provided to donors at all the transplant centers (for easy comparison). Yes, it is important to share program-specific listing criteria prior to transplant or living donor workup! This will help decrease the time it takes for workup if there is transparency about the differences in programs before starting workup. A table for comparison across centers would be helpful. More transparency would strengthen the relationship and provide better care for patients.