Did you expect a different outcome?
Did you expect a different outcome of this survey based on how the motion has been worded and based on the Register readership? Of course, in the year 2021, only few will be in favor of an opt-out approach. Actually a 24/76 outcome is much better than the 10/90 outcome that I have expected based on the two factors mentioned above.
What if the motion were something like “Sharing my healthcare data will benefit my family and me when we will be in the need of a medical diagnosis and treatment choices”?
This new motion should be accompanied by two facts.
First, a medical diagnosis is more accurate if it’s based on the experience from treating millions of patients instead of only thousands. A typical physician may see thousand of patients per year, building her experience of treating several thousands physicians over the years. Her diagnosis and treatment choices would be more accurate if they were based on the collective experience of treating several millions of patients. This of course requires millions of patients giving access to their healthcare data. This access doesn’t necessarily require sharing private data with third parties, but access through techniques such as federated machine learning where only the insights from the data, not the data itself, are made available to third parties. And this data or insight sharing is not for modeling molecules or analyzing clinical trials, but for analyzing treatment success in the real world, which in the healthcare language is called real world evidence.
Second, people seldom change the default option. This has been researched by behavioral science and is evident, among others, in the participation rates of organ donation programs in Europe or retirement investment programs in the US, all driven by the default choices. Although this is relevant to how sharing healthcare data can be accomplished, it should be primed here to avoid digressing into impractical solutions.
Biting the hand that feeds IT
