— John Trader (@JohnMTrader) October 7, 2016
I quickly replied with the following:
There are different definitions of “want” It’s one thing to be ok with sharing. It’s another thing to really WANT to share data. https://t.co/CGFZ3AZtiV
— John Lynn (@techguy) October 7, 2016
This concept is definitely worth exploring. There are a lot of things in life that we want. However, that doesn’t mean we want them enough to actually do them. I want to be skinny and muscular. I don’t want it enough to stop eating the way I do and start working out in a way that would help me lose weight and become a chiseled specimen of a man. The problem is that there are different levels of “want.”
This applies so aptly to data sharing in healthcare. Most of us want the data sharing to happen. I’ve gone so far as to say that I think most patients think that the data sharing is already happening. Most patients probably don’t realize that it’s not happening. Most caregivers want the data shared as well. What doctor wants to see a patient with limited information? The more high quality information a doctor has, the better they can do their job. So, yes, they want to share patients data so they can help others (ie. their patients).
The problem is that most patients and caregivers don’t want it enough. They’re ok with data sharing. They think that data sharing is beneficial. They might even think that data sharing is the right thing to do. However, they don’t want it enough to make it a reality.
It’s worth acknowledging that there’s a second part of this equation: Difficulty. If something is really difficult to do, then your level of “want” needs to be extremely high to overcome those difficulties. If something is really easy to do, then your level of want can be much lower.
For the programmer geeks out there:
If (Difficulty > Want) Then End
If (Difficulty < Want) Then ResultAchieved
When we talk about healthcare data sharing, it’s really difficult to do and people’s “want” is generally low. There are a few exceptions. Chronically ill patients have a much bigger “want” to solve the problem of health data sharing. So, some of them overcome the difficulty and are able to share the data. Relatively healthy patients don’t have a big desire to get and share their health data, so they don’t do anything to overcome the challenge of getting and sharing that data.
If we want health data sharing, we have to change the variables. We can either make health data sharing easier (something many are working to accomplish) or we can provide (or create the perception of) more value to patients and caregivers so that they “want” it more. Until that happens, we’re unlikely to see things change.