Pushing for open data that makes a difference, Sunlight Foundation publishes tactical guide
September 19, 2017
A lot of cities publish data, but not in ways that matter to the people, the group says.
New York is poised to be the first state in the nation to back health data available to consumers through the launch of a patient portal, according to Dr. Nirav Shah, the state’s outgoing health commissioner.
Dr. Nirav R. Shah is the commissioner of health for New York State.
Whenever a physician orders blood work, makes a diagnosis or prescribes a drug, all that information is entered into your medical records. And if you’ve ever been to a pharmacy, a hospital or an urgent care center, you’ve left some data there too.
In the old days, that data was treated like classified information and warehoused in the files of the facility that collected it. (Fans of "Seinfeld" will recall that Elaine had to resort to theft to see her medical records only to learn that she was poorly regarded by her dermatologist.) But now, we know better: All that information belongs to you, the patient.
This year, New York is going to be the first state in the nation to make that health data available to consumers with the launch of a patient portal. The portal is being designed by Mana Health, a New York City-based health IT start-up, with help from the New York eHealth Collaborative.
The portal will integrate data from a variety of sources including the Statewide Health Information Network of New York (SHIN-NY) and the state’s All Payer Database. The SHIN-NY is a secure network that shares clinical patient data across New York State, while the All Payer Database houses claims data from all the payers in the state, both public and private. Best of all, the data will be interoperable, meaning that a patient whose records are on one doctor’s health IT system can still be integrated with those from another doctor using a different system.
But granting access is only part of it. In addition to giving New Yorkers the luxury of viewing their medical data, New York is allowing them to use the data to manage their health. New York’s new portal lets users download data, share it and plug it into third-party apps and services that enable them to manage their health. They can use the data to achieve important health goals, be it losing 20 pounds, managing blood glucose levels or training for a marathon.
That’s not all. New York has already started laying the groundwork for another data-liberating project called the New York State Immunization Information System Blue Button initiative. NYSIIS will create the technology that makes pediatric immunization records available online to parents outside of New York City, once they’re authorized as “responsible persons” by their providers. Information to guide providers will be coming soon.
Handing that task off to parents will reduce the number of requests that providers receive, freeing up their staff to take care of patients. It will also make it easier for parents to get the information, print it out and submit it to a school, camp or child care center.
For New York, the NYSIIS Blue Button is the first time the state is participating in the Blue Button initiative, a public-private partnership coordinated by the federal Office of the National Coordinator for Health IT. Several federal agencies have signed on, including the White House, Veteran Affairs, the Department of Defense and the Centers for Medicare and Medicaid Services. The initiative also has 500 private sector members.
New York has always been a hotbed of groundbreaking ideas. We gave the world its first potato chip, hosted the first vaudeville show and held the nation’s first presidential inauguration. Now, we’re going to be the first to return health data back to its rightful owners and give New Yorkers the freedom to use that data to improve their health.
In doing so, we’re putting the pursuit of good health back into the hands of those who can do the most about it: the consumers.