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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.

Supporting media

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).

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Provide feedback

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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.