Healthy data governance makes for healthy patients

This week, I am in India to attend the 2018 Great Indian Developer Summit. So far, I am so impressed with the quality of all the presentations and workshops I’ve attended, particularly those from my fellow Rocketeers. India is one of the world’s great centers for IT talent, and this event really reflected that.

I also have the honor of presenting on a topic close to my heart: improving healthcare through data. You might know this, but clinical research is actually an area in which IT modernization and optimization could make huge differences in people’s lives. Here’s how.

Currently, the average cost to develop a drug is over two billion dollars, and the time to bring a new drug to patients is around 12 years. If you’re suffering from a serious disease, that’s a long time to wait—assuming the drug gets developed at all. After all, the cost is often a deciding factor in whether a new drug is pursued or not.

Though it’s by no means the only contributing factor, one reason the development of new pharmaceuticals is so expensive and time-consuming is the lack of communication between disparate software systems. The gap between patient electronic medical records (EMR) and trial electronic data capture (EDC) perhaps illustrate this best. In 2018, the process of getting patient data from a trial visit to the actual trial researchers still involves people manually copying and entering data from the EMR system where patients get their data entered during trial visits. These people then need to spend the additional time to verify their work to make sure it’s correct.

In IT organizations, there can be tendency to think about data in abstract terms. We speak about things like “data integration” as if they were ends in itself, but as the case of pharmaceutical development highlights, there are real people and consequences behind the managing of data. Imagine if the healthcare data were instead integrated with the pharmaceutical researchers’ data—or better yet, if there were no EMR or EDC system at all, but just one system with the patient at the center. There’s no doubt that we could expect major time and cost savings in the form of better, faster and cleaner data. That could translate into fewer patient visits and communications, more effective research and ultimately increased options for patients.

Those in the healthcare industry will recognize what I’m describing here as an example of a patient-centric model of care. As this case demonstrates, IT has an important role to play in improving outcomes, whether that’s patient outcomes or business outcomes like sales or customer service numbers. We must remember that IT is about more than just the data—it’s about the people that rely on it.