Facts as the basis for media regulation in health

Today I went to an event organised by the Democratic Society to discuss regulation of the media. This is the penultimate stage in their ongoing project, whereby a number of writers have contributed posts on particular aspects of the subject. I wrote a draft piece making the case for change, based on the harm arising from the misrepresentation of science in healthcare.

A lot of interesting discussion was had around how we can encourage the public to participate in the production of the media, how the culture of journalists can be changed for the better, and what oversight and regulation can and should be put in place.

One point of discussion today was the basis on which cases presented to a regulator should be judged. To me, the obvious imperative is to ensure that what is reported is true, or at least not clearly known not to be true. I understand that this is a difficult criteria on which to legislate, for a number of reasons. I also know, having been to a couple of talks by legal blogger and onion knower David Allen Green, that the basis of British law is not the finding of facts, but the determination of liability.

If my understanding is correct following todays discussion, the current system for complaints in the press arena, outside of clearly illegal activities, is based largely on the harm to the individual complainant. The complainant has to demonstrate that the particular story was either an invasion of their privacy, harmed their reputation through implication, or made false statements about them. This is a practical solution to the difficulties of resolving disputes between parties, and could be made to protect parties of lesser power and wealth, although it currently does not.

It seems that much of what was discussed revolved around the manipulation of public perception and the reporting of private lives of individuals. What I feel this misses, though, is the direct protection of the public from directly harmful untruths; it only protects us from untruths that are likely to be harmful to parties that are able to bring the kind of action required, and even then only minimally. I feel it is very important to protect people from wider, currently largely unchallenged untruths that can lead to people making the wrong healthcare choices, and causing unnecessary suffering or death.

It is clear from the large sets of scientific data that there is no link between the MMR vaccine and autism, that drinking alcoholic increases cancer risk, and that homeopathy does not protect against malaria. To say otherwise is both clearly factually inaccurate, and dangerous. My position is that publications that make claims like this should not have to be challenged by an individual that has been directly and demonstrably harmed by that particular article, but should be made to retract claims that are counter to the body of evidence and everything we have learned about healthcare.

Exactly what the mechanism for this would be I do not know, and I am not sufficiently versed in the formations of political and regulatory bodies to speculate on the best fit. However, I am unsure where the significant difference is between the case being brought on the grounds that the claim is wrong or that the claim is potentially harmful. If a claim in the health field is harmful, it is because it is factually wrong. If a healthcare claim is factually wrong it is therefore potentially harmful. These two cannot be clearly distinguished in this instance, as the potential to harm is a necessary property of incorrect health claims – if it doesn’t harm relative to alternative claims, it is not wrong.

What I want to be clear about, though, is a key distinction I would draw. I am convinced that people should be protected from dangerous untruths and that to allow them to be printed unchallenged is a threat to public health, but I do not wish to suppress innovation, new ideas and challenge within science. As long as the facts are presented fairly and accurately and the distinction between fact and speculation is clear, I am positively happy to see people thinking about new forms of treatment based on cutting edge technology, genetic discoveries or refined drugs. It is through innovation and challenge that we make the great breakthroughs.

The best ideas should then be tested thoroughly using appropriate trial designs, to see what is likely to work. These tests will produce a new set of data to add to the pre-existing, on which further theories and speculations can be based. Once again, though, having done the testing, it should be required that the results are accurately described – the facts are the immutable foundations on which any theory should be built. Often several competing ones can be reasonably developed, at least until further testing discriminates between them.

However, in the more developed areas, there tends to be little room for controversy in the evidence, as these controversial areas are the first to get further research to provide clarity on what it is that is happening. The simple facts of the trials to look at the supposed link between MMR and autism are available – no well designed study, of which there have been several, has found evidence of a link. This does not logically prove that the link is not there, but provides a very robust level of evidence – certainly greater than much evidence used to convict people of crimes.

Based on this, I believe the statement ‘there is no link between MMR and autism’ is acceptable as a reasonable summary of the evidence, whereas the statement ‘there is a link between MMR and autism’ is not. It is inaccurate and dangerous, and is exactly the sort of statement that any worthwhile media regulator should be tackling.

The details of how a particular statement is deemed a reasonable summary of the evidence is not clear to me in all cases. Those areas that have live, genuine scientific debate should be allowed to work themselves out through the scientific discourse. Individual facts resulting from experiments should of course never be manipulated or misrepresented, but there will be occasions where there is more than one summary of the available evidence that is reasonable, and the interplay between these is where the interesting science will happen. There is no crime in being wrong when it was a reasonable position to take based on the knowledge available, but continuing to promote a disproven hypothesis in medicine is dangerous.

All the above is simply an expansion on the famous observation that you are entitled to your own opinion, but you are not entitled to your own facts. I think more than that, the media are entitled to give us their opinion, but they are not entitled to give us their own facts. In many areas this is problematic, but in healthcare it leads directly to poor health decisions, and avoidable suffering and death. This must be a priority for a regulator.

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