Fierce Urgency of Now: Revealing Clinical Insights with Better Health IT Standards

First posted in It Takes a Community

This past year, I completed a tour of duty with the Office of the National Coordinator for Health Information Technology (ONC).   I served as coordinator for standards related to Consolidated CDA, quality measures (HQMF) and results reporting (QRDA) that are now part of Meaningful Use Stage 2.  These standards, along with Direct Project and standardized vocabularies, will contribute to Health Information Exchange that works.

I’m proud of the ONC and the community that delivered these standards.  It’s a breakthrough with significant benefit to the United States.  But it’s also only a start.

The need for better Health IT solutions hits home

Three days after completing my work with ONC, my wife Julie found out she had breast cancer.  We have spent every day since in the struggle for her health and survival.

We had the usual frustrations with coordinating her care with a team spread across organizations —  using different electronic health records, having to schlep images on DVDs, courier-ing reports for second opinions, and seeking out lab results that never made it to her patient portal. Of course, Health IT can ultimately help improve these countless operational issues.

But this is all secondary to another issue we confronted: the limitations of clinical knowledge.  We were initially excited to learn that Julie’s cancer was HER2 positive. What was a killer 10 years ago was now one of the most treatable kinds of breast cancer.

But our second opinion team came to a different conclusion:  it was ambiguous as to whether she was HER2 positive and the alternative outcome would mean that she was “triple negative” – the worst form of breast cancer.  Other tests were done and the results remained unclear.  We were in uncharted territory with no idea of efficacy of treatment options.

There weren’t any applicable studies.  And there was no way to learn from others’ experiences – to understand signals from the experience of others in the same boat.

We desperately wanted to know more, but there was no more to know.  There is no targeted or distributed query standard that could ask and answer questions of the electronic health records around the country.

Query Health standard offers new possibilities to share EHR knowledge

In a somewhat cruel twist, I had just led efforts at ONC to establish just such a standard.  The Query Health standard, built off of Meaningful Use Stage 2 technologies for quality measures and results reporting, is underway in pilots around the country:

• The Primary Care Information Project (PCIP) within the New York City Department of Health and Mental Hygiene (NYCDOHMH) and the New York State Department of Health (NYSDOH) will use the Query Health system to investigate and allocate appropriate resources for chronic and acute disease monitoring.
• The FDA Mini-Sentinel project is an ongoing distributed network to support public health surveillance of the safety of medical products and the pilot entails adding a new clinical data source at Beth Israel Deaconess. 
• The Massachusetts Department of Public Health Network (MDPHnet) pilot includes the creation, operation and management of a distributed health data network for public health surveillance of diabetes, influenza-like illness and ad-hoc menu-driven querying. 

MDPHNet’s Query Health pilot is live and in production. New York and FDA pilots are going live shortly.  All three will be demoing at HIMSS13 in the Interoperability Suite.

Collective data can better inform individual patient care

Julie and I have seen the very best that the healthcare system has to offer.  It’s a profoundly good system in the direct treatment and care for the patient.  But it’s also a system restricted by the knowledge of a limited number of clinical studies from a relatively small group of patients, many of which cannot even be reproduced, and none of which were directly applicable to her condition.

There is an urgent and compelling national need to leverage the investment we are making in electronic health records (EHRs) — to make visible, within the constraints of patient privacy and security, the experiences of others to provide signals and knowledge that informs each patient’s care.  This is the challenge and opportunity that Health IT must deliver.  This is truly the “fierce urgency of now.”