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Table 3 Definitions and illustrative quotes of the values identified from participants’ discussions about using epitope matching for kidney transplant allocation

From: Public values and guiding principles for implementing epitope compatibility in kidney transplantation allocation criteria: results from a Canadian online public deliberation

Value

Definition

Illustrative Quote

Health Maximization

Pursuit of the most health benefit for the most people (utilitarianism); improving public/population health

“We have to look at it on the bigger picture in terms of the long-term benefit to the entire transplant community [versus individual concerns and impact].” – David, session 3

“Because of the limited number of kidneys, there's always going to have to be a point at which somebody decides, you get it and you don't. And to me, it seems the fairest way to decide is, who is going to be best matched with that kidney? And then we're not going to have to come back in five years, and put another kidney in that person.” – Peter, session 2d

Protection/Mitigation of Negative Impacts

The imperative to put in place strategies to protect the vulnerable, or against possible negative effects

“You know you’re going to reach this tipping point. Let’s put it rather colourfully by saying a person might be ready to drop dead. At some point I kind of agree that there maybe needs to be a trigger to say hey, wait a minute, we need to bump this person to the top because they’re really in a bad state OK.” – Dan, session 3

Fairness

The principle of standardized treatment such that no person is unduly favoured or disadvantaged

“I can be the fifth in line at the grocery store with a carton of milk, but I have three or four people in front of me who have a hundred items. I still have to stand in line. So I can’t just jump to the front of the line because all I have is a carton of milk.” – Sara, session 3

Science/Evidence-based Healthcare

The goal or obligation of using of health interventions that have been shown to result in benefit for patients

“[I hope] that there’d be a large body of research that shows – that actually supports the claim or proved outcomes. Because right now, if you can’t say, you know, we tried this for 20 years, with thousands of people, and this is what it comes out to, short of that you have to talk people into it, because you’re not using actual experience to support that.” – Colleen, session 2C

“I think it’s important to recognize like if epitope compatibility is the science, right, as opposed to blood types, then it underlies this anyway. And the question is not whether or not it exists, but whether or not you’re measuring it. And I find, so if that is the science I find it hard to say we’re just not going to measure it, we’re not going to use it.” – Brandon, session 3

Responsibility to Maintain Trust

Responsibility of decision-makers/healthcare systems to act out of respect for the public, to ensure health programs meet patient needs and expectations

“There needs to be buy in. I mean, you know, people’s lives are on the line. And so any transition, you would need a lot of public awareness and understanding of benefits and stuff; because there’s so much potential to do damage in immediate moment.”

Colleen, session 2c

Efficient Use of Resourcesa

Moral duty to use scarce health resources in the best possible way

“So, what it comes down to is—reducing the need for a second or third transplant and extending the life of an existing transplant, works very much to control the use of disposable resources.” – John, session 2d

Logic/Rationalitya

The use of a scientific, logical, objective or otherwise rational approach to decision-making

“I guess when you’re making decisions and if you introduce subjectivity into it then it’s kind of a slippery slope maybe versus […] clinical reasoning.” – Michelle, session 4

  1. aThese values did not contribute to operational principles; however, they were discussed multiple times by participants and were cited as reasons for voting against some recommendations by several participants