The value of clinical trial data reuse.

As everyone knows, data has been and will continue to be one of the biggest and fastest growing industries in the world. Data is everywhere. It’s the websites you visit, the food you eat, the people you talk to, the questions you google, the medications you take, and so on. And this data is one of the topics we talked about during the PHUSE working groups. Obviously, much of this clinical data feels extremely personal to people. There’s an immeasurable importance to data privacy, but what happens when data is anonymized? Suddenly its value has skyrocketed, especially in a clinical and healthcare setting. And this is what data reuse groups have been shouting at the top of their lungs for the past few years.  

According to data privacy laws, you can’t reuse data collected for clinical trials for any other purpose. This means that data is sitting on the shelf, not being used, even though there’s immense value in it. However, if we could liberate that data, take it down from the shelf and give it a purpose, potentially that data can be used to save countless lives, money, and time.

How can we reuse clinical trial data?

Data reuse can be used to create safer and less expensive clinical trials. People outside of the pharma-industry may not realize, but people have literally given their lives to be on a clinical trial. They may have died. They may have become unwell. The drug they were trialing may have failed, and we’re not going to reuse that data?? To me, that’s a tragedy. We should be taking that data, we should be combining it with other data and looking for value, for patterns, and for conclusions. There could be discoveries of new drugs in there. There could be interesting indications of trial safety or efficacies according to different compounds. In theory, you can take that data and combine it with all the other clinical trials and pull unprecedented value from it.

Mass anonymization of clinical data not only protects patient confidentiality, but it can potentially help uncover key scientific findings. Looking specifically at clinical trials for rare diseases; the very nature of rare diseases is that not many people are suffering from them!! So applications like reusing placebo groups from previous clinical trials enables us to get as many people with a rare disease on a clinical trial as possible. We can also pull and combine data from other ends of the pharma development spectrum. Data from preclinical and the FDA Adverse Event Reporting Service can be combined with clinical data to get a more complete picture of drug’s effectiveness. You can reuse patient data in multiple of ways, and we’re discussing even more ways in our clinical data reuse groups.

Why is data not the new oil?

A recurring theme in our data reuse group is that “data is the new oil”. I don’t think this is true because you can only use oil once, but with data, you can use it over and over and over again. Data is fantastic! If you look at the biggest companies in the world today, they are data companies.

Companies doing amazing things right now are looking at the data and making decisions using that data. There is immense value in this approach. For example, car manufacturing companies can use real world driver and crash data to improve the design of their cars. They become a data company which makes cars. Imagine a future where pharma companies behave more like a data company that makes life enhancing medicines. There is so much information and value in pharmaceutical datasets. We’ve got the cleanest data in the world because it’s coded, it’s clean, it’s well maintained, and it’s been collected by professionals.  It’s about time we start using it in more ways in order to save more lives. 

There’s an incredible opportunity sitting at our doorstep right now; data transparency and anonymization is the key to open that door. We are already holding that key; we know how to anonymize data. This means that we can use that data for countless other society-benefiting activities. If you need the key, call me and I’ll show you mine… and we can get you one cut.

Cathal Gallagher, Transparency Solution Owner, Instem