Values and Preferences with Evidence-Based Medicine

0
897

Professor Gordon Guyatt, MD, MSc, FRCP, OC is a Distinguished University Professor in the Department of Health Research Methods, Evidence and Impact and Medicine at McMaster University. He is a Fellow of the Canadian Academy of Health Sciences.

The British Medical Journal or BMJ had a list of 117 nominees in 2010 for the Lifetime Achievement Award. Guyatt was short-listed and came in second-place in the end. He earned the title of an Officer of the Order of Canada based on contributions from evidence-based medicine and its teaching.

He was elected a Fellow of the Royal Society of Canada in 2012 and a Member of the Canadian Medical Hall of Fame in 2015. He lectured on public vs. private healthcare funding in March of 2017, which seemed a valuable conversation to publish in order to have this in the internet’s digital repository with one of Canada’s foremost academics.

For those with an interest in standardized metrics or academic rankings, he is the 14th most cited academic in the world in terms of H-Index at 240 and has a total citation count of more than 247,000 as of April, 2019. That is, he probably has among the highest H-Indexes, of any Canadian academic living or dead.

Scott Douglas Jacobsen: So, with respect to some of the media coverage, that has been done recently over several years. Also, as a rule of thumb or maybe a principle of ethics, the media does have a firm responsibility to respect the opinions of experts, in their relevant fields.

As they should be working to build those lines of communication, so that they can serve the public better as communicators of relevant information to the public on issues of concern to many people in the day, so, I want to start from the side of the experts in, for instance, medical fields.

What are some things that medical experts should bear in mind when they are coming forward? To journalists, people who are out in the field trying to get information over particular issues.

Distinguished Professor Gordon Guyatt: So, first, you started out by saying the journalists should have respect and regard for the experts. I would argue that healthy disrespect or not, perhaps not disrespect, but healthy skepticism should be as important as respect and regard.

So, for instance, you start saying, “What should experts bear in mind when they want to get their message out?” One of the problems is that the experts who want to get their message out are invariably conflicted.

So, for instance, the most obvious would be they have done a study, which was funded by the pharmaceutical industry. They inevitably, to some extent, will be carrying the message of the pharmaceutical industry.

That is a fundamental conflict of interest problem, even if you haven’t been funded by a commercial entity. Everybody wants, every investigator wants, you to believe their results. If somebody else has shown different results, they would want you to ignore the other person’s different results and only focus on their results.

Furthermore, even if they would have done a systematic review and are recording everybody’s results, they want you to believe they have an exciting message about their systematic review rather than a less exciting message that may also be consistent with the results. So, you were experts 100% of the time.

An expert who wants to get their message out is to a lesser or greater degree conflicted. So, if I am being cynical, I would say number one, advice to experts: hide your conflicts. It is only so that they won’t be noticed by the journalists. So, certainly do not start off by saying, “Here are my conflicts of interest,” because this will undermine your position.

Then, make it as flashy as possible because journalists are competing for space in there. I am sure you’ve experienced this. They are competing for space and then have a headline: “Possible new finding needs confirmation.” It is not only to get your study highlighted in the popular press.

So, if the true message is ‘new study has findings,’ then “preliminary findings that need confirmation,” you do not say that. You say, “Here is a new study that is exciting and this could be a potential breakthrough,” even though the first message might not be the right message.

So, I will pause here. I did not know what else you would want me to say, but if you want to get your message out and accepted and publicized, those would be my somewhat cynical pieces of advice.

Jacobsen: So, that comes from the perspective of a single expert who may be wanting to send out that flashy, slightly or completely misleading, the headline to that journalist who may not have the wherewithal or the experience to discern properly.

Now, what about when it comes to the information that journalists may be wanting to get that is accurate? That is coming from individual experts, not from associations or organizations that are umbrella organizations.

Guyatt: Organizations and umbrella organizations have their conflicts. Now, the National Cancer Institute in the U.S. has gotten better. Now, I am no expert in this area. I may not be up to date on things, but traditionally their messages have not been screening tests or generally values and preferences sensitive.

In other words, the trade-offs are close between to screen or not to screen. In many instances, now their messages, everybody should be screened. So, organizations have their conflict of interest. If you go to the urologists’ organizations, they will tell you that all older guy should have a screening. If you go to radiologists, they’ll tell you every woman should have a mammogram, et cetera.

So, organizations have their conflicts of interest. Then you go to an organization of gastroenterologists. They will tell you everybody should have a screening colonoscopy. So, organizations have their conflicts.

I would guess. I do not know. But if journalists go to an organization, the person who they will talk to you is a PR person who’s out to make their organization look good.

Jacobsen: With respect to the side of the journalists, not in terms of their skepticism, however, in terms of their reportage, if they want to do a good job and I assume most do, they are not going to be too shady with the way that they are working. When they report on a medical finding, how can they best have that tentativeness about new research findings or that firmness about more established research findings in terms of their language use?

Guyatt: Gosh, it is easy in terms of language. Although, the journalists are conflicted in that regard. However, words: tentative, preliminary as yet unconfirmed, not yet ready for prime time, not yet ready for clinical implementation could be hundreds of such words or phrases that convey the limitations in the evidence.

Jacobsen: Right, and from within your own research, dating back to the ‘90s, with evidence-based medicine, but also, of course, I am extending this to the latter part that was developed, which was the values and preferences factor.

It is still within a Canadian context for Canadian journalists. When they are going to be reporting on medical research around evidence-based medicine, what should they be bearing in mind for the values and preferences of Canadians?

Guyatt: So, values, first, you have to identify this as a value in preference-sensitive situations. So, now, we are only talking about things that are ready for that. That is ready for clinical implementation. So, of the things people will report, things that are promising or a breakthrough that someday might lead to something in a clinic.

The values and preferences come in when you are talking about something that might be implemented right now because that is where it becomes relevant. Then one needs to be clear on what the benefits and risks are and the journalists can think of the desirable and undesirable consequences of doing A versus B.

Would this be valuable in print, or insensitive for the Canadian population? For the Canadian population, I do not know if you were talking relative to the Americans as we’re often in-between the U.S. and Europe.

We are less enamoured of uncertain benefits and more worried about risks than the Americans are, but perhaps less so than Europeans. However, in terms of general values and preferences, studies are limited. We still do not know. A question that could be asked of the investigators is: do we have any information about how Canadians feel about these benefits and downsides?

Canadians and people all over the world, as far as we can tell, are extremely stroke averse, more so than the doctors are as it turns out, for instance.

Jacobsen: So, why?

Guyatt: Because strokes lead to permanent disabilities. So, there is a world-famous study where people with a particular condition, an abnormal heartbeat that caused atrial fibrillation, are at risk of having strokes.

We give anticoagulants to prevent strokes and it is, fortunately, they cause serious bleeding. The question was, “To prevent 10 strokes, how many bleeds would you be willing to tolerate?” Doctors were 10 or less, and patients were more than 20. In other words, the patients with much more stroke averse definitions were much more bleeding averse.

So, there have been for particular conditions. Studies are done looking at what values and preferences people have and in value and preference-sensitive situations. They become important.

Jacobsen: Now, I want to relate a personal story. I had a conversation with an individual who identifies as a fundamentalist Christian. His words not mine, so they are a literal reading of the text, not any political interest.

However, what was noteworthy was what I do know in some, strongly conservative, traditionally religious, I am going to list a “news sources.” It is a form of misinformation and disinformation, where I would point out that, for instance, medical care is a human right.

They would then retort, as they did, “Since when is the government supposed to give you healthcare.” And I said, “As an extension of medical care, it is a right,” and I learned this from you. I said, “Look at further who this started with, which was Tommy Douglas List in Saskatchewan. Canada quickly caught on to that it was a good idea, then we went to other provinces, then federal. There are international documents that stipulate this. They were assigned by a bunch of countries.”

“Because they thought they were good moral principles, exemplified in rights” and this took a bit of a conversation to pin down. What is the line of thinking when people talk about healthcare as a right? Where this individual living in this country received misinformation or disinformation from American “news sources”?

That simply misinformed them about the reasons behind certain things being in place and the ethics behind them that span back to, as far as I know, at least to December 10, 1948, in the Universal Declaration of Human Rights.

How can we as journalists help to combat that deep form of it seems deliberate misinformation?

Guyatt: I guess I am not completely clear. There are no universal ethics. Ethics changed over time between countries, within countries, historically, so because somebody has said, “We think this is a Universal Declaration of Human Rights.”

I do not know. It seems to me somebody else’s entitled to say, “Those are not my ethics.” So, if what you are talking about is a claim that ignoring the consensus of most people – and I was going to say, “The consensus that most people think healthcare is a human right?”

But Canadians and Americans have a different attitude about this. You were entitled to healthcare, but what healthcare and under what circumstances, so many Americans do not have their hypertension treated, their diabetes treated.

If they show up on death’s door, then they get treated, but they get treated differentially, according to how much they can pay – even if they show up on death’s door. Most Americans would say, “That is fine, thank you.”

So, where is this? So when we say healthcare is a right, what health care are we talking about?

Jacobsen: In principle, as a right.

Guyatt: What health care are we talking about? That is a right.

Jacobsen: Yes.

Guyatt: Clearly, most Canadians are getting on toward two decades ago. I still think it is the true belief that equitable access to high-quality health care should be a right. It is this specific. Equitable access to high-quality health care is not what the Americans believe. They do not believe in equitable access to high-quality health care. Far from it.

Jacobsen: Yes! However, as you have noted in prior conversations, what is the state of other advanced industrial economies, for instance?

Guyatt: Yes! So, exactly. So, this is the point of values and ethics. Ethics, there is no such animal as uniform universal ethics. So, most European countries think that at least a reasonable standard of healthcare should be accessible without financial barriers, right. So, but not true south of the border, not true in every low and middle-income country where only a few can pay for the optimal care. So, what your rights are as far as health care differ radically across the globe.

Jacobsen: Could it be a function the ideals that are typically exemplified in what I am taking is “universal” are more general or consensus-based? That as a country becomes more industrialized and richer and more liberalized and democratic; it tends to lean more towards the form that has a value system that you would see in Canada or Western Europe.

Guyatt: Yes, there is no doubt about that. The U.S. is hammering in many ways. It is going against the general rule that you stated. So, there are exceptions, but that is certainly the general trend.

Jacobsen: Now, when it comes to the net, does this come out in the outcomes in the United States, or does it also come up in public attitude surveys?

Guyatt: Oh, I am not aware. If you look at who people vote for, and if you look at the resistance to the Obama health care legislation, which wasn’t trying to solve the problem, it was trying to make the uninsured problem less and then the subsequent government does anything it can; everything it can to appeal the whole thing!

The fact that even perhaps we should make the gradients a little bit less get this resistance that tells you about the attitude.

Jacobsen: Yes! Fair enough.

Guyatt: The universal health care, so single-payer, universal health care for 30 years; there has been a relatively small medical organization advocating for this, which for many reasons is the most sensible.

It is a huge gains. Huge gains in equity and efficiency and health outcomes. They have got zero traction. So, that tells you about the American attitude.

Jacobsen: Now given regular life without proper information, inaccurate information as per the individual not having necessarily accurate information. Does this, if people have proper information, would they lean more towards the type of healthcare seen in Canada or Western Europe if they were in America?

Guyatt: So, in regard to aspects of the prior conversation, you are now talking to a highly conflicted individual on this particular matter. However, yes, the fact, there is certain evidence. These are clear. Universal single-payer health care within a high-income environment is much more efficient.

It is much more efficient in other words. Your bang for your buck is much greater and has major equity advantages. Now, it has what people might be referred to as an autonomy disadvantage. In other words, it horrifies Americans to think that you cannot pay for better health care here.

It something that is disturbing to people who put a high value on autonomy. So, it is not everybody. It is, “What value do you put on equity?” Some people do not care about equity at all. What value do you put an efficient healthcare system? You might have less.

“What value do you put on autonomy?” But people who believe in efficient healthcare and equity would certainly, if they knew the facts, choose single-payer. People who do not care much about equity and efficiency and value autonomy. “If I have the money, I want to be able to pay for the best of the best,” they would not make the choice even knowing the facts.

Jacobsen: Looking at that latter group who would be more inclined towards autonomy as the prime value for themselves? Do they tend to be the same group of people, who, who can, who can buy a media outlet?

Guyatt: Yes! Absolutely, which in my view explains why most Canadians do not know that over the last six years the percentage of the GDP spent on health care has decreased. Why do Canadians not know that? Because it is not in the interest of those who control the media. That would be my answer to that particular puzzle.

Jacobsen: So, then, maybe, when it comes to human rights and the, not an objective but, universal or consensus-based ethics shown in things like human rights, could an argument be made that says, “universal except in circumstances of heavy public relations to shift public opinion on particular topics”?

Guyatt: No, to me, “universal” is a bad word as soon as you come near ethics. Before we started, in our conversation prior to starting the tape recording, the issue of abortion came up.

Jacobsen: Yes.

Guyatt: So, that is a great one. There are some people who think it is ethically unacceptable that women do not have access to legal abortion and so die having illegal abortions. They would be horrified.

On the other hand, there are those who believe life starts at conception and think it is horrifying to think we murder. Murder to terminate a pregnancy. One cannot argue on any grounds that one position is right and one position is wrong other than in some fundamental principle that is not a matter of evidence.

Jacobsen: One more last question, this is a question that hasn’t been answered, but from the point from the experts in Canada. What tends to be their view on reproductive health rights for women? Do they think there should be access to it?

Guyatt: An expert, you are talking to who. What do you mean by experts? So the experts, you talk about experts in the evidence about the relative merits of different ways of terminating pregnancies.

Those experts would have no doubt about the ethics of terminating pregnancies. Their only interest is “What is the best way of terminating pregnancies to minimize adverse events and burden?”

On the other hand, experts on education programs talk women out of having abortions, but different experts would have different perspectives. So, the question, when you say, “Experts,” experts in what exactly?

Jacobsen: That is completely fair point and I have to run, so thank you much for the opportunity and your time.

Guyatt: This is fine, take care.

Jacobsen: Take care.

Guyatt: Bye, bye.

We conducted an extensive interview for In-Sight: Independent Interview-Based Journal before: hereherehereherehere, and here. We have other interviews in Canadian Atheist (here and here), Canadian Science (here), Canadian Students for Sensible Drug PolicyConatus NewsHumanist VoicesNews Intervention (here, here, and here), and The Good Men Project (herehereherehereherehereherehereherehere, and here).

Photo by Olga Guryanova on Unsplash

Leave a Reply