#FHIR and Alt-health

Unless you’ve been living under a rock, you’ve probably heard the terms ‘alt-right’ and ‘fake news’ by now. According to Wikipedia: “the alt-right (short for “alternative right”) is a loose group of people with far right ideologies who reject mainstream conservatism in the United States.” and “Fake news websites (also referred to online as hoax news) deliberately publish hoaxes, propaganda, and disinformation to drive web traffic inflamed by social media. Note: I’m well aware that Fake news websites aren’t confined to just the alt-right, but there’s a strong link between alt-right and fake news. It’s become clear, as time as progressed, that this is just another security risk in the eco-system that is the internet. Viruses, phishing, and now fake news. Something for Google and Facebook to work on – here’s some thoughts about that.

Waiting in the wings is something else I call ‘Alt-Health’ – the spread of bad healthcare advice running like wildfire through social media. One particular aspect of if – the anti-vaxxer campaign – that’s getting air time in the mainstream press, but it’s much broader problem than just that. Bad medical advice on the internet is nothing new – e.g. Google have a team devoted to working on the quality of web pages returned for medical related searches. But the spread of bad advice on social media is outside that. And it’s not always wrong advice, actually. Sometimes, it’s extremely good advice for one patient, but wrong for another patient. But it’s handed on as gospel – ‘this worked for me, so ignore your doctor and do what’s proven to work’… if only life were so simple. Looking forward, I expect that this is going to turn into an epidemic, as people turn away from complexity and cost, seeking simple solutions. What they’ll get is outright wrong or wrong in context, and it’s going to kill people. On the other hand, we know that while a lot of the advice is bad, it can also be very good as well. In some circumstances, better than the clinical advice a patient gets, particularly for rare diseases.

People are going to need trusted healthcare advisers to sort of good advice from bad advice. Unfortunately, there’s a challenge here: some advice will be 100% stupid and wrong (you can cure cancer by eating the right vitamins) while other advice will be 100% right and true (you should stay on the treatment advised by your clinical team, or talk to them if it’s not working out), but a lot of advice is going to fit into the category ‘or maybe true, depending on circumstances’.

That’s where FHIR enters the picture: the FHIR standard has the coverage of this space:

  • Patient’s can get their clinical data in the FHIR format – their past records, their diagnosis with supporting evidence, and their care plan
  • They can share their with their trusted adviser
  • As well, decision support services, criteria, quality measures, clinical evidence, provenance chains – all these can be represented in FHIR (including from the micro-patient communities that have the expertise)
  • We’re working with the biopharma industry to formalise trial data reporting too

Though there are many other standards at play here, FHIR is the one that links all this space together, and naturally fits into the web/internet eco-system.

So I believe that one of our key activities in the FHIR community over the next few years will be ensuring that the standards are in place to address the challenge that alt-health brings – that is, to enable clinical decision support to rank the reliability of random advice on the internet.

 

3 Comments

  1. Thomas Lukasik says:

    Grahame,

    ‘Alt-Health’ is merely the modern version of ‘Old Wive’s Tales’ like “Feed a fever, starve a cold” or “Eat carrots to improve your eyesight”, which have been around as long as medicine has.

    FHIR has enough work on it’s hands as it is surviving the hype surrounding it’s potential to improve interoperability, so it seems foolish to now suggest that it’s also going to be a way to counter the spread of folk medicine on social media.

    TJL

  2. Grahame Grieve says:

    you’re right that it’s the modern version, but it’s more, but scale.

    I do think that it’s something that’s on our plate: creating the infrastructure to support patient focused clinical decision support

  3. Thomas Lukasik says:

    @Grahame

    RE “I do think that it’s something that’s on our plate: creating the infrastructure to support patient focused clinical decision support”

    Even if enabling “patient focused clinical decision support” *is* on FHIR’s plate, that’s a far cry from the quite different and enormously complex task of “rank(ing) the reliability of random advice on the internet”.

    And even if that Watson-esque task would somehow be enabled by FHIR, there’s no reason to believe that it would have any measurable effect on the number of patients Googling their symptoms, or be able to “address the challenge that alt-health brings”.

    Promising that FHIR can do stuff like that when we haven’t even reached the top of the ‘Peak of Inflated Expectations’ yet when it comes to improving the state-of-the-art for basic interoperability is just going to add to the un-helpful FHIR hype.

    TJL

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