What would justify withholding health information from people?

Health services professionals in the US were asked what would justify withholding health information from the public. The reason they found most convincing, at 62%, was avoiding statements that could undermine the public’s confidence and trust in health experts. It ranked above avoiding stigma to marginalized groups, above avoiding public confusion, and above avoiding providing ammunition for people who would harm vulnerable groups.

The survey came out last week in Health Affairs. It covers one US professional network, members of AcademyHealth, at a 4.3% response rate. Average support across the ten reasons sat almost exactly at the midpoint of the scale. These professionals disagree with each other about what to do in practice.

Most of these reasons are about who is being protected: the public from confusion, marginalized groups from stigma, vulnerable people from a finding used against them.

The one that topped the list is about the standing of public health – that confidence and trust in health experts can mean protecting people’s ability to act on good advice, or protecting our own credibility. I can’t tell exactly which reason it is, but either way, the counterpart in such communication doesn’t receive caveats, uncertainty, or finding that complicate the message.

Leaving some information out can feel like the responsible choice

Two of the ten reasons are about how experts look. Avoiding the appearance of being ignorant, and of being indecisive. Both came bottom of the list, convincing about a fifth of respondents. The reasons that persuaded a majority are all about protecting someone from something. This reads as care, which is why the practice is easy not to notice.

There is a well-studied bias underneath all of this. The third-person effect is our tendency to judge that messages affect other people more than they affect us. When we estimate the effect on someone else, we use a crude model where more exposure means more effect. When we estimate it on ourselves, we use a more careful model that accounts for context. Paternalistic attitudesturn out to be the strongest predictor of supporting restrictions on what other people get to see.

The gap has been measured in our own professions too. A survey of 377 US doctors and nurses found it present, and shaping whether they intervened when they encountered health misinformation.

Nor is this each of us deciding alone. Organizational research finds shared assumptions about when speaking up is risky or inappropriate, and they shape what people leave out even where the climate is seen as open. We learn them by watching each other, which is also why they are rarely discussed.

People can use the uncomfortable information, when we give it to them

Australian researchers randomly assigned women invited to breast screening to one of two decision aids. Both explained the mortality benefit and the false positives. Only one also explained overdetection, the cancers that screening finds which would never have gone on to cause harm. Two years later, the women who had been told about overdetection knew more about what screening does, and the same proportion of each group went for screening.

The numbers people would need are usually missing from what we publish. An analysis of 2,506 online health claims found that 84% of pages carrying health claims gave no absolute effect size at all, and that NHS and CDC pages were no more likely to include effect sizes than commercial or charity pages.

Medical ethics worked through this twenty years ago. A 2005 analysis asked whether uncertain health threats should be kept from the public for their own good, and found a strong case against withholding.

We think about persuasion much more than about what people need

Public health has spent years building the capability to reach people, through community health workers, trusted messenger programs, partnerships with creators, and spokesperson training. Nearly all of that work studies the audience: who they trust, what they already believe, and what might move them. A recent review of strategies for effective public health communication finds the same emphasis in research, with theorizing “heavily centered on psychological/cognitive factors over sociological/structural factors.”

When we set out to persuade, we work on the wording, the framing and who delivers it. When we set out to earn trust, we start from what the person needs in order to decide something for themselves. We are much better resourced for the first, and the second is what the person on the other side is actually asking. People work out whether to trust a source from whether it has been useful to them before, whether it says what it does not know, and whether it treats their own experience as something that counts. Distrust often comes from feeling that authority over one’s own experience has been dismissed, which is not the same as failing to understand the science.

Which brings me back to the wording of that survey item. It treats the public’s confidence and trust in health experts as a single thing to be protected. Trust in science and trust in scientists differ, and both vary by topic. And if we think of trust as something our institution holds and can lose, we end up managing people instead of becoming worthy of trust.

That starts with being able to say what we are asking people to trust us about, and for what. And with noticing that when we leave a caveat or a finding out, we would probably want it left in if we were the ones reading.

Withholding information signals a lack of trust. If we don’t trust people with the information, why would they trust us to make the best decisions possible for public health?