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Dr. Nirav Shah

Dr. Nirav Shah

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.

  • Panha Chheng

    This is tremendous. I am proud to call myself a New Yorker, and thank you to New York for once again leading the way. I will be downloading my records into Medyear first chance I get.

  • Mike Fratto

    What options are there for residents to opt-out. What protections are in place to ensure this data isn’t access by unauthorized people and/or agencies? What monitoring is in place to ensure that accesses are logged and stored? What options are there to remove data once I leave the state. Will participation in this service be required to get health care in New York State or can health care providers tell patients to join or don’t go elsewhere for care? What assurance do residents have that access to our data won’t be abused?

    The questions just keep on coming.

    • Kaya5255

      Totally agree with you!
      I’m looking into how to remove myself totally from the program.

  • Steve Sisko

    Mike Fratto raises all the questions that I suspect will be hard to obtain clear, straight answers to. I absolutely think this ‘proposal” or “vision” is a good thing and probably sounds great to those who don’t have a basic appreciation for all the basic technical, business and operational decisions and hurdles that have existed for years and that must be overcome; not to mention the financial, legal and political hurdles.

    The comment “Best of all, the data will be interoperable,…yada.., yada.., yada…” seems rather naive. What makes this group so sure they can achieve all these wonderful things when so many others have failed? Reminds me of what I heard from the Cover Oregon crowd a few years ago. I guess time will tell…

  • Kaya5255

    I totally argee with you Mike Fratto!! OPT OUT for me, too!! This repository of private health information is being done without informed consent of the health consumer!!!
    If it isn’t, participation should be only in the hands of the consumer. And if one determines their in and want out….the records should be expunged immediately!!!

  • http://de.linkedin.com/in/gunterdubrau/ Gunter Dubrau

    I saw a presentation of Mana Health Portal on http://patientportalfornewyorkers.org/voting/voting/nyec-voting/. Congratulation for this winner app!
    Please help me to get a screenshot of the BB Download dialog view. The Transmit dialog was in the presentation but Download not. Regards, Gunter (gunter.dubrau@icw.de)

  • http://charlenengamwajasat.wordpress.com/ Charlene Ngamwajasat MD

    I’m a NYS physician and native New Yorker who helped design the Mana Health portal. I think that Mike brings up a lot of really good questions that likely will be covered in the FAQ when the portal fully launches. As it stands, the portal is an opt-in which means no one is forced to sign up (and IMHO they shouldnt be). I also don’t think it should be a condition of getting care. Privacy came up in every conversation ive had when talking to people-even my own friends and family, about the portal. The consumer has control when it comes to who is allowed to access the data. There is a screen that shows who is allowed to access your data and a red-yellow-green system that will alert you if someone is accessing your information.

    The question about being able to correct/delete data that is your own is a really valid one. What I wanted was the ability for that to happen (esp if info was incorrect) without a lot of hassle to do it. I’m not sure that is included in the final version but what I wanted was the patient/consumer to be able to flag something in the record & get it corrected.

    Steve is right in his statement that this will benefit providers who lack the resources (time, money, tech & govt expertise) to build their own independent thing. My hope is that it will benefit caretakers & patients. Even by just listing contact info & a medication list can be really helpful in an emergency situation. As someone who grew up in NY and will be using the portal myself I share your reservations & want you to know that a lot of that went into consideration when designing the portal. I appreciate your comments and hope that more people comment/criticize when this thing fully launches. Though led by a nonprofit & built by a for profit it’s a public utility & is built for the people of New York and to a certain extent by the people. It also is paid for by the people of New York and I encourage people to comment because it can only get better with your input.