Welcome to the Millennial World!
If you can remember a time when you had to watch the news to get the weather forecast, look at a map to find your way around a new town, or actually remember the 7 digit phone numbers of all of your friends and family, you could also be one of those people who turns off your smartphone location services, pastes viral status announcements that facebook does not own your photos, and still pays bills with paper checks. The world has changed, life is more convenient, information is more widely available, choices are more evidence based, and we have a whole new set of risks and benefits to weigh in our everyday lives.
Making decisions in relation to privacy of your personal health data is not just one of convenience or social connection. Data sharing in health is a critical component to improving quality and safety for your care today and the care you and your family will receive in the future. While you may have a personal preference or even a gut reaction to the concept of your data being part of the “big data” revolution in healthcare, it is important to know what this means before you make a decision to use or not use health related technologies.
Securing your personal data
Let’s start with the basics. First and foremost, you want to make sure that any identifying data about you and your health is kept secure, with only those to whom you have given permission able to see anything that could identify you personally.
The risk of your electronic data being “hacked” while stored on a secure server with HIPAA-level encryption is actually much lower than your paper records being stolen or your data stored on a native app (an app that collects data directly on the device rather than the cloud). Also, if paper records or a device is stolen from your provider, there is also no way to track the thief. Web-based tools have audit logs that can allow web detectives the ability to actually find out who accessed data improperly.
One of the best reasons to keep your personal health data on the web is that it is very easy to access it from anywhere, at anytime. This means that, as long as you have access to your record, a sudden visit to the ER in your pregnancy will be met with all of the information about your care whether you can reach your provider or not. Sharing information among your care team can help increase continuity and knowledge about who you are, your health history and your personal values and preferences for your care.
The outcomes of your care can be “de-identified” and used to evaluate the quality of your care. This data can, in turn, be used to help your provider do a better job of providing care to you and to others who seek similar care in the future. This process of measurement and benchmarking for quality is what will drive a healthcare delivery revolution. If your data is not included in these “big data sets”, your experience will not count as feedback to improvement. Ultimately, the goal of payment reform is to reward providers who deliver quality care and sanction those who don’t. Without this critical outcomes data from platforms like Maternity Neighborhood, the high value care of that your provider delivers will not be recognized and reimbursed by your insurance company.
What is de-identified data?
In order to use data for quality improvement, it must be cleared of all data that could be used to identify an individual person. There are standards for this process and Maternity Neighborhood utilizes both approved methods to ensure all data used for research or marketing of our product is de-identified. Additionally, your de-identified data is combined into larger sets of data in order to see patterns and trends, so it is extremely unlikely that anyone is ever going to be looking at an individual person’s data.
The choice is yours.
Just as you can turn off your smartphone tracker and use paper maps to find your way around, you can also turn off electronic records and the data sharing inherent with these systems. You can refuse to allow your data to be placed on electronic platforms by asking your provider to use paper records only for your care (keep in mind that if you have health insurance, your information must be filed electronically). If you are comfortable with electronic records but don’t want your de-identified data included in any datasets, you can contact your provider directly to “opt-out” of data sharing on the Maternity Neighborhood platform.
More resources for further research on the topic:
Maternity Neighborhood Whitepaper on Value-based Maternity Care
Download this Blog Post as a Handout (PDF)