An examination of the evolution of the pharma data supply chain and the vital importance of establishing trust with patients to access complete information sets from Matt Sinderbrand, formerly CEO of Betterpath Health and now SVP and chief product officer at Hu-manity.co.
Now that we have all this data, what do we do with it?
This sentiment now echoes through the hallways of most major pharmaceutical companies, many of whom spent the last several years implementing new initiatives in big data, precision medicine, artificial intelligence, and other “innovation” programs marketed as solutions to the industry’s drug development woes. Unfortunately, many of these programs fail to achieve results or get off the ground, and this is mostly because the people responsible for their implementation are unaware of the difference between data and information.
Data is everywhere, and everything. There’s a data point for my cholesterol level, and a data point for when I filled my last statin prescription, but in order to figure out how the two are related, we need information. Information is a representation of these data points in context. Sounds simple, right? In the scenario above, the fact that I filled my prescription does not mean that I took my meds, and the fact that my cholesterol remains high does not mean that these meds aren’t working. Problems occur when, more broadly, we rely on mass sets of limited data points to guide decisions – from marketing spend, to R&D, to participant recruitment, and beyond.
The point here is that without context, data is meaningless. Organizations operating under the “more data = more value” model are in for a rude awakening if they haven’t already seen the writing on the wall. The good news is that the key missing ingredient required to transition data into information has been right in front of us the entire time (hint: it’s the patient). The barrier toward activating this key ingredient is the absence of a trusted and transparent relationship with the individual patient – a consistent pain point felt by all drug makers who have been misled into believing that a direct relationship with their customers creates more problems than it solves.
Leading pharmaceutical companies are preparing for an evolution of the data supply chain. As public attention continues to shine a light on the current practice of “anonymized” data sales, a collision of ethics and commerce is forcing the industry to consider new ways of doing business. While some may view the consumer’s growing awareness of the value their data commands as a problem, forward-thinking organizations will recognize it as an opportunity to get ahead of the curve. Those that can successfully navigate the shift to a consumer-inclusive model stand to benefit enormously from unprecedented access to reliable primary source information.
Chronic disease will continue to bankrupt the USA and its citizens unless we figure out a way to assign the right treatment to the right person at the right time. In order to do that, we need access to complete sets of information. A direct, consensual relationship of trust with the consumer is the first step, and I believe the efforts of companies like Hu-manity.co will lead the way.
Matt Sinderbrand is the SVP and Chief Product Officer of Hu-manity.co. He was the CEO of Betterpath Health which was acquired by Hu-manity.co on April 30, 2019. Matt holds an MPH from the University of Denver, is a Certified HIPAA Security Expert (CHSE), and is a contributing author on several patents and research protocols.