Table 4 Operational principles driving participants’ discussions about how to implement epitope matching for kidney transplant allocation
Operational principle | Definition | Underlying Values | Illustrative Quote |
|---|---|---|---|
Need for Flexibility | Desire for safeguards or exceptions built into the epitope-matching system to help mitigate potential negative effects; to introduce epitope testing in a cautious or “balanced” way when potential benefits are not guaranteed | Protection/mitigation of negative impacts Fairness Science- or evidence-based healthcare Health maximization | “There’s multiple factors that people want to play into when they get a kidney, and one of them would be age and one of them might be years on dialysis [or dialysis health] and one of them might be how good the epitope matching is…. And so I think using a system where it’s an algorithm where it combines all these factors, that would allow the flexibility and take into account all the factors we think are important.”– Adam, session 3 |
Need for a Transition Plan | Desire for a slow and well-planned shift from the current kidney matching system to the epitope compatibility-informed system, to help mitigate negative impacts and help patients on the waitlist adjust to the change | Protection/mitigation of negative impacts Fairness Responsibility to maintain trust | “I think it would be pretty shocking for people to be anticipating a new kidney in the next 24 months or 28 months to all of a sudden be said, well it could easily be 10 years from one day to the next. That they be advised that in six months or in a year and a half, whatever is necessary, for people to get used to the idea that the system has changed. You need a transition period I believe.” – Henry, session 4 |
Need for Transparent Communication | Desire for clear and honest communication with healthcare users about the rationale, planning process and potential impact of the switch to an epitope-matching system to mitigate negative effects and maintain trust in the transplant system | Protection/mitigation of harm Health maximization (through increased kidney donation) Responsibility to maintain trust | “I thought about transparent communication. So acknowledging that there’ll be some people that it might be different for them with the change… Transparency but make it human too because these are people’s lives, right.” – Anne, session 4 |
Need for Accountability | Need to ensure that the new epitope-based matching system performs as expected/promised; and/or that adjustments or changes be made in the event that epitope matching does not result in net benefit | Responsibility to maintain trust Science- or evidence-based healthcare | “So there's a lot of data, there's a lot of statistics on how it's working, or not working. I would hope that there would be some sort of mechanism in the adoption if we proceed that way to monitor the epitope compatibility to ensure its success, and it is actually improving the allocation program. And then could be modified or adjusted if that's not the case.” – Anne, session 2b |