State of the Genetic Health Information Network: Insights from a Multi-Stakeholder Summit on the Digital Infrastructure to Enable Precision Medicine

Despite concerted efforts from stakeholders across the healthcare system, challenges persist in delivering precision medicine reliably, efficiently, and cost-effectively. Because critical challenges manifest at the intersections between stakeholders – or are inherent to the information systems that connect them – no individual stakeholder can solve them alone. Instead, active collaboration is required.

At the most recent Genetic Health Information Network Summit, a group of leaders from across the healthcare ecosystem came together to discuss the shortcomings and potential improvements to the infrastructure connecting genetic information in healthcare. The group, which included health insurers, clinicians, hospital systems, researchers, policymakers, patient advocates, clinical laboratories, technology vendors, and drug developers. The following key themes emerged:

  1. Frameworks and transparency around test quality and value remain limited
  2. Data has replaced oil as the world’s most valuable resource
  3. The promise of precision cures is becoming a reality, but barriers remain
  4. Providers still need genetics incorporated into their workflow
  5. Consumers are driving the market and forcing a health system response
  6. Disruptors are coming from outside of healthcare

The substance of this discussion was documented for this Whitepaper, which includes key implications important topics of discussion for the 2019 Genetic Health Information Network Summit (Sept 9-11, Nashville) and beyond.