When someone new comes to healthcare, it’s always amazing to see how many things they think happen that just don’t. For patients, that’s the realization that doctors often don’t collaborate together on their care and they often don’t share information. That’s on the patient and their caregiver to ensure the records get where they need to go and care is coordinated. If you think that’s an exaggeration, check out two of the three apps I featured here to see how big of a problem this is for rare disease patients.
There are a lot more. Jay Parkinson, MD shared one he discovered when he started medical school. Here’s what he shared in this Twitter thread:
1/ There is a huge misconception found in most people outside of the health industry— people think that there are many scientists studying all aspects of health, especially diet and “things that are good for me and things that aren’t.”
2/ Scented candles are bad. Avocados are good. Nut milk is a life-extender. I ask folks:
Who would be studying these concepts?
Who would financially benefit from the results?
Who would be able to follow people long enough to understand the effects of one thing on humans?
3/ In my first year of med school, an Ob-Gyn attending made me research a concept because, in our conversations, I assumed there would be research on it. He knew there wasn’t. But he told me to report to him the next morning what I found. I searched all night and found nothing.
4/ The next morning, deflated, I told him I found nothing. He said “yeah, I know.” I’ll never forget his point. The vast, vast majority of things in the medical/health world have either zero or very poor research behind them. Especially if there’s no money in knowing the answer.
5/ That’s why ad-supported health content is such gold. It’s an endless stream of conflicting, ridiculously poor evidence. My two fav articles about this are: Gizmodo and The Atlantic.
What an incredible perspective that most of us don’t fully realize or want to admit. To be fair, this isn’t really a knock on things like evidence based medicine. It’s good to still follow the evidence. It’s more a knock on the fact that there isn’t nearly enough research and evidence. That’s the problem.
Writing this, I’m struck by the juxtaposition of how many medical articles are published in things like UpToDate. Most doctors look to services like UpToDate to stay up to date on the latest research. If they tried to do it all on their own it would be tough. Now imagine how big of a problem this would be if everything in healthcare was research based. I’m not sure we understand the magnitude of how much of medicine isn’t evidence based and how much more evidence is needed. Kind of like we don’t understand the scope of the healthcare interoperability need.
We currently live in a “walking on eggshells” culture, where only “approved” narratives are allowed to be presented. Doctors who deign to think outside the box face censure from their employer; their ideas are not allowed to be peer-reviewed; they may even lose their licence if they use their medical judgment to treat a patient in a manner that goes against the prevailing orthodoxy.
Until the medical establishment, peer-review journals, and discussion sites revoke their “moratorium on brains”, I see no solution to the aforementioned collaboration problem.