Below is the first in a series of guest posts from Nirav R. Shah, MD, MPH, the commissioner of health for the state of New York, on healthcare information, clinical analytics, and interoperability. Look for his posts in the Intel Healthcare Community over the next few months.
We’re getting a lot of attention in New York these days for opening up the state’s health data on our new site, health.data.ny.gov. In fact, New York won the first annual Data Liberators Award at Health Datapalooza in Washington, D.C., a few weeks ago.
The process of opening up our health data has taught us some valuable lessons, lessons worth sharing with decision-makers in health care and government. Here are three of the most important:
Patients Own the Data
It’s easy to argue that the hospital who treats a patient owns the information gleaned from that encounter or perhaps that it belongs to the insurance company that is paying for it. I’m sure a good case could be made for any of the parties eager to stake their claim on the data.
But I contend that the data belongs to the patient. It’s the patient’s blood pressure numbers, surgery results and medication records. And it’s up to patients to decide whether they want it made available to others. In deciding what to do with data, we should always place the patient’s interests at the top before doing anything else.
Privacy is Essential
The secrecy of data is big news these days. Nowhere is privacy more important than it is in the realm of health care.
Health data is unlike other kinds of data, a truth that is most apparent for those of us who grew up in the era of HIPPA laws. Health information often contains closely guarded secrets that aren’t discussed in hospital elevators or within earshot of the next patient in line, or in polite company.
Even now, in the era of Twitter and Facebook when many people think nothing about revealing intimate details about their lives, the privacy of health information must be a priority. Most people don’t want others to know that they’re struggling with depression, taking a stimulant to control ADHD or undergoing infertility treatments. These are private, intimate medical details, and it’s up to the government to create laws that ensure they remain that way.
Privacy protections are critical, however we choose to use data. Otherwise, we might risk losing the privilege of tapping that data.
The Benefits of Sharing
As a society, we can reap many perks from sharing health information. Individual data by itself has little value if it’s in a silo at your doctor’s office, the insurance company, or your local pharmacy. The power of Big Data emerges only when it’s pooled together. As Ginni Rometty of IBM says, “The value we create today is by sharing.”
Up in New York, we have already proven that shared data can be used to improve population health without compromising privacy. Take for example our data on the percentage of students who are overweight or obese. The information comes from 680 school districts in New York, but no where do you find the names of any individual students.
Schools can use that information to create school lunch menus, determine physical education standards or set recess schedules. Community organizations can use that data to create programs in their towns. Physicians can look at that data to get insight into their patient pool.
In this era of health reform, health data of all kinds – big and little -- are going to play a significant role in improving care and containing costs. But using data wisely starts when we acknowledge the patient’s rightful ownership of that data, then the importance of privacy against the potential that can be achieved by sharing.
What questions do you have?