I recently had a conversation about data, medical equipment, and patients with some developers. During the conversation I made the comment that I thought it would be a great idea to make the information available to patients.
I immediately received a tremendous amount of push back from the development team and entrepreneurs. They told me I was missing the scope and the goal of the project. They want to develop a tool that takes the information generated from a device and be able to share it back with a hospital, clinic, or healthcare organization. The Enterprise.
They are looking to produce another black box or widget with an Enterprise Solution. Make a widget for the sake of technology, place it on the market, and organizations will spend big dollars on incremental value.
My stance was the information is important to patients. Patients are not “owned” by any single Enterprise or Healthcare Organization. Patients have the ability to cross multiple systems, organizations, and enterprises. Patients travel. Patients move. Patients need information in the moment, and not always on a planned and scheduled basis.
So wouldn’t it be wonderful to offer that information directly to patients?
Ultimately it is their information, their data, and they should have access to it. If you want to develop an “app” and charge $1 for it, go ahead. If I can spend a $1 to get access to my data and be able to manage it, I would pay for it.
The response was again that I missed the point.
I didn’t understand that patients do not understand the data. Patients do not understand what it means. Patients would not be able to gain meaning from the information. Patients may share and it may lead to adverse situations. Allowing patients to have access may mean additional regulatory difficulties.
I heard a lot of reasons as to why we CANNOT.
I heard a lot about the economics of doing Enterprise items versus patients items.
I responded accordingly:
“Selling a single enterprise solution is nearly not as valuable as selling 100K patient focused apps allowing patients to have access to their data. The risk is not creating the app, the real risk is if we do not do this and someone else does. Patients and communities want access to their information, to their data, especially in healthcare….allow this to be a mechanism that helps patients to have a more meaningful conversation with their physicians; allow physicians to use this to educate, teach, and share with their patients; allow this level of information to be leveraged to show both payers and politicians the beauty in how it changes the relationship amongst patients and provides and leads to improved outcomes…” (4P’s Of Healthcare)
Do not underestimate the power of patients. If you do, you will lose.
In my opinion, let patients decide. Let them tell you what is meaningful, helpful, and useful.
Build what patients want, not what you think patients want.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM or follow me on twitter @cancergeek