Mr. Vice President,
We couldn’t agree more with you more.
As the collection and storage of health data increases exponentially, there is a rapidly growing need to access, share and analyze this data to solve some of healthcare’s most challenging problems. To enable the sharing of this data, standards must be defined by the government and adopted by healthcare organizations to ensure that patient privacy is protected. Developed in collaboration with healthcare, information security, and de-identification professionals, the HITRUST De-Identification Framework provides a consistent, managed methodology for the de-identification of data and the sharing of compliance and risk information amongst entities and their key stakeholders. Risk-based de-identification is one of the most effective methods to manage privacy risks for sharing data, while allowing for the greatest level of utility for research and analysis.
Using this proven de-identification methodology, organizations such as the American Society of Clinical Oncology (ASCO) are developing learning health systems to provide doctors and other healthcare providers with access to cancer patient information. When little is known about a particular cancer or cancer treatment from clinical trials or published research, providers could use these systems to evaluate how best to approach an individual case by using information on millions of people to inform their decisions. A critical element is not only having historical information, but also including the most recent information available on cancer treatment to allow providers to learn things that would otherwise not be possible. This is important because, as you said, treatment options are continually evolving at a rapid pace.
We strongly support you claim that “data and technology innovators can play a role in revolutionizing how medical and research data is shared and used to reach new breakthroughs.” Industry standards for de-identification of health data are imperative to jumpstarting this revolution. Your leadership in advancing these standards as part of your “moonshot” would be one giant leap toward making more data available for research and analysis while ensuring patient privacy.