Data Access, Clinical Trials, & Why They’re Essential

This article was previously published on Dr. James Goydos' Medium.

The phrase “data is the new oil” is one that has taken on a life of its own since the phrase was first coined by mathematician Clive Humby in 2006. A subject of debate since its initial discussion, its premise remains mostly the same, and relevant today.

Data, like crude oil, is potentially valuable but needs to be refined in order to extract its potential value. The ‘value’ here can extend beyond the financial and into the intangible, as well. There is no doubt that, in the case of medical research, for example, that data has value.

Valid and reliable data is in fact essential in order to conduct reputable clinical trials.

Data is Rarely Valuable On Its Own

In the context of clinical trials, the metaphor also applies. Data collected from patients — demographics such as height, sex, or weight, or data collected on medication side effects — are rarely valuable on their own. Deciphering the data to extract actionable insights helps to advance understanding which can be translated into clinical actions.

While many have written about the perils of the metaphor and the challenges that data collection presents to the consumer or patient, there is still undeniable benefit to be had from increased access to information. Many cities, states, governments, and private companies around the world have recognized the advantages of increased access to data and have helped to foster its availability. Open data portals have proliferated in recent years, with hundreds of them popping up internationally. These provide a pipeline for the world’s population to access a myriad of different types of information, depending upon their needs.

Solving some of the world’s most critical medical concerns — from cancers to the current coronavirus pandemic — require global research initiatives, and reliable data.

City-data portals often provide information pertaining to traffic congestion or air pollution. Other portals, such as Healthdata.gov enable access to high-quality anonymized medical data for researchers, policymakers, and more, in the interest of advancing health outcomes. Solving some of the world’s most critical medical concerns — from cancers to the current coronavirus pandemic — require global research initiatives and reliable data.

In my work as a medical researcher, I can attest to the importance of reliable data, especially in regard to clinical trials. The collection of valid baseline data on all trial participants is a crucial component in the process.

In a clinical drug trial, for example, if one does not have this information, then it is impossible to prove scientifically that there were any measurable changes in participants in response to a drug.

A baseline must be collected prior to the investigation in order to serve as a comparison point against later data. Thankfully, in the context of this type of research, this is a routine, and required part of the methodology.

In other contexts, such baseline data can be hard to come by. Access to statistically significant sample sizes, properly collected information, and other considerations can all present challenges to advancing research.

It is with this understanding that leads me to appreciate resources that provide greater access to data. Data sets such as this one provided by researchers from the University of Porto and other institutions have enabled greater access to patient data pertaining to melanoma images and other relevant medical information.

Increased access to this data helps to democratize information. This allows not only researchers like me to better understand skin cancer, but also allows technologists to view this data from a different perspective. Solving these problems is complex, and often requires insight from a diverse set of backgrounds.

It is my hope that we continue to support the sharing of this data, with the caveat that we continue to respect patient privacy in tandem. In the pursuit of advancing the medical understanding, it is critical that we do not lose sight of the importance of properly governing medical data and patient privacy.

About James Goydos, M.D.

Dr. James Goydos is an expert in melanoma research and specialist in surgical oncology with an M.D. from Rutgers University. With over 20 years of experience as a Professor, Surgeon, and Clinical Trial Lead, he is a leading expert in his field.

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