Connecting the Genetic Health Information Network (a whitepaper)

May 4, 2017


At Concert Genetics, we are believers in the promise of precision medicine. In particular, we believe in the role genetics can play in transforming the healthcare system.

We’re also pragmatists.

Two decades into the genetic revolution, the practical barriers to integrating genetics into the delivery of clinical care are undeniable. The fact is, the infrastructure of the healthcare system wasn’t designed to accommodate genetics. As a result, stakeholders across the healthcare system are struggling to deliver precision medicine to patients in a reliable and cost effective way.

Quick Summary:

  • Precision medicine holds great promise. However, the systems on which healthcare operates weren’t designed for genetics, so the healthcare system is not prepared to deliver fully on that promise.

  • We believe a fledgling but powerful cross-stakeholder health information network is emerging – the Genetic Health Information Network. Although it is inefficient today, if optimized, this network could serve as the backbone of precision medicine.

  • Today, we released a paper describing the current state of the Genetic Health Information Network and outlining a path through which stakeholders from across healthcare might come together to optimize this Network for the benefit of all. The paper can be downloaded here.

We have seen these struggles up-close. We have worked with clinicians, hospitals, laboratories, governing organizations and health plans to study and address the challenges that they’re facing. Through this, we have come to observe that a fledgling and inefficient (but nonetheless powerful) health information network is emerging in genetics.

We call this network the Genetic Health Information Network, and we believe it can become the backbone of precision medicine.

As we see it, this Network is neither a single technology platform nor a single organization. Instead, it is comprised of patients, clinicians, hospitals, health plans, laboratories, governing organizations, pharmaceutical companies and researchers, and, critically, the channels of communication between them. Today, the Network is inefficient, built largely on disparate systems and manual processes. However, we believe that all stakeholders can join together in enhancing the Network so it will meet the requirements for system-wide delivery of precision medicine.

That leads us to today.

Today, we are releasing a whitepaper that, first, describes the current state of the Genetic Health Information Network, and second, outlines our view on how stakeholders across the healthcare system can (and must) come together to transform this fledgling, inefficient information network into a high-performing engine for precision medicine delivery.

In the paper, we explore the challenges faced by stakeholder groups in supporting the delivery of precision medicine. We describe a strategy for bringing these groups together, propose immediate priorities, and outline a longer-term vision of what a fully functioning Genetic Health Information Network will be able to accomplish.

Of course, this paper represents our point-of-view from our unique vantage point – it’s not intended to be a comprehensive thesis, but rather, a conversation starter. Our goal is to catalyze a discussion and collective action so that one day — in the not-so-distant future — all stakeholders will benefit from the full integration of precision medicine into the healthcare system.

We encourage you to download a copy of the paper and contact us with your own ideas and feedback. Help us create a meaningful dialogue about how to connect the Genetic Health Information Network and deliver on the promise of precision medicine.

Click to Download


May 4, 2017


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