Tunnah’s musings: the dangers of medical misinformation

As he heads off to the US to speak about the democratisation of medical information at the 11th Annual Meeting of ISMPP, Paul Tunnah muses on the real danger of everyone having their say – the wealth of dangerous misinformation available online.

I guess one of the reasons why social media is so enticing to me is that I'm a naturally sociable creature. It's fascinating meeting new people, hearing what they have to say and entering into debates about all topics healthcare related, or otherwise. It's why I always enjoy speaking/moderating at conferences and conducting interactive sessions.

Not infrequently, the opportunity arises to conduct social media training workshops with medical Key Opinion Leaders (KOLs) who, by virtue of their standing and years of experience, are often not digital natives.

It was as I was being introduced at one such session recently that one of the KOLs leaned back in his chair, looked me squarely in the eyes and remarked that he had never used social media, saw no value in it and most definitely never would. In fact, he found it a distinct nuisance because his patients kept coming in and spending the first ten minutes discussing all the rubbish they had found on the internet about their condition.

"Remove all the medical misinformation from the internet"

And so a really interesting conversation ensued.

We discussed the options for resolving this issue, which was taking up an inordinate amount of this KOL's precious time. In fairness, the problem was not that they didn't like speaking to patients, but rather their frustration at having to spend time correcting and dismissing what the patient had found out, before starting the consultation afresh.

Potential solutions included:

• Refusing to speak to patients about information they had found online: Possible, but not very effective as studies have shown that increasingly patients want a more equal partnership with their doctors and will switch doctor when this is not the case. So, at best, the problem is just being moved on.

• Remove all the medical misinformation from the internet: Not a very likely solution and, even with the right collaborations and technology, this would be something akin to trying to empty a bath with a spoon while the tap is still running.

• Take a proactive stance to disseminate accurate medical information online: Maybe we're on to something here.

And with the discussion of those options a light bulb moment ensued – the realisation for this KOL that the only way to fight this fire of misinformation was with a hotter, and more accurate, flame.

Let me be clear – I have no delusions that one KOL starting to use social media to educate patients will make a difference. But 1,000 ... 10,000 ... 100,000 working collaboratively with the right organisations and technology partners? Perhaps.

Nor is this a fantastical pipedream. Google recently announced that it is working with the Mayo Clinic to ensure the health information it returns (which accounts for one in 20 searches) is validated by a panel of medical experts. In fact, one of the other major destinations for patients – Wikipedia – has been trying to beef up the quality of its health pages for some time via WikiProject Medicine.

"A medical lie is halfway round the world before qualified advice has got its trousers on"

The problem, up to this point, has been that the robust peer-reviewed sources of medical information that physicians rely on, such as journals, congresses and medical communities, have, at best, been presented in a format that is almost impossible for patients to understand and, at worst, locked away from them behind closed doors.

It's the reason why a medical lie is halfway round the world before qualified advice has got its trousers on, and once it's gone it's very hard to rein it back in. You need look no further than the whole scandal with the completely fake data published on vaccines and autism by Andrew Wakefield to see how this works. While this case is somewhat unique in that the misinformation started in a reputable medical publication (later retracted), the fact that the lies pertaining to this data still permeate the internet is tantamount to the failure of traditional, robust medical publishing to connect with the public.

For me, the situation is analogous to the whole transparency debate. Ben Goldacre, author of Bad Pharma, continues to campaign to ensure doctors make decisions on the basis of all robust medical information on a product, without any being withheld. But a surfeit of inaccurate information is equally, if not more, dangerous.

Every time false information on treatments comes into the hands of patients, it runs the risk of them stopping their medicines or switching to alternative therapies with no proven benefit. This can be life threatening.

"But a surfeit of inaccurate information is equally, if not more, dangerous"

There is no simple answer to this, but it's a very compelling argument as to why traditional medical publishing has to change and physicians, patient organisations/patients, the pharmaceutical industry, regulators and technology companies must work together to better utilise digital channels and social media to increase dissemination of accurate information.

Making false claims is criminal; failing to address medical misinformation is not. But both are potentially dangerous to patients.

About the author:

Paul Tunnah is CEO & Founder of pharmaphorum media, which facilitates productive engagement for pharma, bringing healthcare together to drive medical innovation. It combines industry-leading content and social media engagement services with the globally recognised news, information and insight portal pharmaphorum.com, working with pharmaceutical companies, service providers and broader healthcare organisations to help communicate their thought leadership and connect them with relevant stakeholders.

For queries he can be reached through the site contact form or on Twitter @pharmaphorum.

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