I've been working with the World Economic Forum's project on breaking barriers to sharing health data as a patient representative. Their target audience is mostly biotech researchers, who are focused on accelerating and improving the drug discovery process. I want to point out that there's another huge opportunity for process innovation -- the process of deciding what is the best treatment option for an individual patient -- that does not get as much attention. It's a shame that we are the losing information in the "n-of-1" experiments being done every day on patients all over the world. How can we learn and get better about those decisions if we don't track the decisions and outcomes?
Here are the main takeaways:
Patients need to be able to access real-world data from other patients so they can determine, with their doctors, their best treatment options.
Barriers to global data sharing, including privacy and malpractice concerns, and institutional competition, inhibit people from obtaining these potentially life-changing insights.
Providers and researchers should capture and share treatment decision logic, while advocacy groups should continue to work with data scientists to accelerate the data-sharing breakthrough.
Sharing data globally is hard. My concern, especially for the target audience of researchers and bioinformatics data scientists, is that global data management efforts are focused on monolithic, global standards, which makes the challenge so big that it will take decades to solve. My alternative, proposed in this article, is to solve problems for narrowly defined patient groups (the narrower and rarer the better) which are addressing urgent, life threatening diseases. If you solve one or more of those, you will get to scale it to other groups. This is basic change management and Agile thinking: a series of small successes in the real world ASAP. It is less difficult to implement because each small situation is much more bounded. Keep it simple and focus on a singular minimum viable product and beachhead market. I point to several leading examples.
If you are interested in the full article, you can click here.
Please let me know what you think.