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The Promise of Clinical Data Sharing

by John Moore | March 23, 2021

About a month ago, I ruffled a few feathers. The brief post highlighting the increasing interest in selling healthcare data to third parties seemed to cast a shadow. Not sure if this is a result of the Google-Ascension ruckus, which was unfounded, but just the same generated negative press. Or maybe it was something else – who knows.

What struck me as particularly odd about this blowback is that in reality, the sale of healthcare data has been going on for decades. This is really nothing new and does not warrant any alarm bells provided that those selling such data to third parties have clear data governance standards and better yet, an advisory board to help insure such selling of data is truly for the betterment of care: improving clinical pathways and protocols, development of more targeted therapeutics, surveillance monitoring for patient safety, reducing health disparities – and the list goes on.

…[T]he healthcare sector has now reached a point where we have a substantial amount of longitudinal data on a given patient – data we can use to better understand the efficacy of varying treatment protocols [across populations].

Since the founding of Chilmark Research, I have always held in the back of my mind that the true promise of the digitization of patient data would be the opportunity to more deeply understand what therapeutics work for a given patient, a given cohort. Since the passage of the HITECH Act and the subsequent mass adoption of EHRs, the healthcare sector has now reached a point where we have a substantial amount of longitudinal, clinical data on a given patient – data we can use to better understand the efficacy of various treatment protocols at given points along a patient’s journey.

Barriers Still Abound

At least that remains the hope for there are a number of barriers that have stood in the way, but those barriers are slowly dropping.

Chief among those barriers is the lack of interoperability across the EHR landscape. This lack of interoperability has made it extremely difficult, if not virtually impossible (at least economically) to pull together all the clinical data of a patient, from primary care, to specialists to hospital(s) into one comprehensive record. The recent promulgation of interoperability regulations as part of the CURES Act will go a long ways towards lowering this barrier.

Our forthcoming Integration Infrastructure report takes a close look at interoperability including providing forecasts for projected growth over the next few years. What was somewhat of a shock to us when we first ran the numbers was the absolutely massive opportunity for integration solutions in the life sciences market, which will dwarf the existing provider and payer markets where most of the attention has been paid to date.

Upon reflection, it all makes sense – life science companies have an insatiable appetite to gain access to clinical data, have clear business cases for its use and certainly have the resources to make it happen.

This is really nothing new and does not warrant any alarm bells – provided that those selling such data to third parties have clear data governance standards, and better yet, an advisory board to help insure such selling of data is truly for the betterment of care.

But interoperability may be one of the easier barriers to remove. An even bigger, more costly barrier is cleansing and normalizing that data to subsequently conduct analytics. There is also the issue of curating patient data over time. Right now, there are exceedingly few solutions that help to automate this process.

In speaking with one former data analytics leader at a cancer research center, she stated that roughly 80 percent of her staff was dedicated to just cleansing, normalizing and curating internal patient data across the three instances of a single EHR vendor that this healthcare system used. Obviously, a very manual, resource intensive process.

This is a primary reason why many of the new entrants that are looking to sell clinical data to life science vendors are offering a significant service wrap-around that includes data normalization and curation rather than a simple licensing of data which has been the prevailing model of most incumbent vendors.

The Wrap

There is significant value in the aggregation, curation and analysis of clinical data. Truly an amazing opportunity to move towards true, personalized medicine that can improve outcomes and most importantly, the patient experience.

It is also not without costs that will be required of data brokers who seek to aggregate, cleanse and curate clinical data for third party uses. Someone will need to pay for that effort. I also have no problem with companies and their healthcare partners wishing to seize upon this burgeoning business opportunity. My only condition is that it be done above board, not hidden, for transparency will be critical to prevent some of the issues that both Google and Ascension faced when their partnership came to light.

So vendors, what is there to hide? Why the fear to talk to an analyst about your own efforts to improve care delivery by working with other vested interests in healthcare to improve the development of therapeutics, identify patients for clinical trials recruitment and conduct surveillance to insure patient safety. These are noble endeavors that deserve applause. Let’s talk about how you are contributing to this worthy cause.

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