As the amount of health data in the world increases, so do the privacy needs that must be addressed in order to generate insights from it. However, rapidly evolving rules complicate the compliance process, making world-class privacy expertise essential to maximizing data utility.
Privacy Hub by Datavant has the largest team of statisticians and data scientists in the HIPAA Expert Determination industry. In combination, this group of professionals has performed more than one thousand HIPAA Expert Determinations.
In this series of interviews, our industry-leading Privacy Experts expound on what their experience with HIPAA Expert Determination has taught them about compliance and the future of health data privacy as a whole.
Fran Lane, Senior Data Scientist and Privacy Expert at Privacy Hub, marks the third interview of the series.
An Expert’s Path to Privacy
What is your health data privacy background, and what attracted you to the field?
How the Desire to Solve the World’s Problems Led to HIPAA Expert Determinations
My background is in mathematics, because I love that discipline. I’m just one of those people that likes it when things are in a particular order, when you can figure out a specific method to lead you to a single correct answer. After my degree, I went on to complete a Ph.D. in astrophysics, which to me felt like something in between mathematics and data science. In pursuing that doctorate, the main thing I discovered about myself was that—although I liked scientific research—I didn’t really mind what I was doing, as long as I was solving interesting problems that actually had real-world implications. My work in astrophysics, though fascinating, had no effect on day-to-day lives. That’s why, once I finished my Ph.D., I started looking for jobs where I could apply all of my acquired skills to something that actually made some sort of a difference. This is how, in early 2021, I landed a job at Mirador Analytics [a HIPAA Expert Determination provider that eventually became part of Privacy Hub by Datavant].
One of the things that most attracted me to the privacy sector was the fact that there’s still so much room to develop f new methods. The field is constantly evolving and expanding. So once I started learning about privacy, I got hooked. The thing I love the most about it is its real-life impact. For instance, the pandemic, which was a horrible tragedy, highlighted the importance of sharing and linking health data. In order to do that safely for everyone involved, protecting patient privacy is essential.
The New Generation of HIPAA Privacy Experts
One of the great things about working at Privacy Hub is learning from the previous generation of experts. It’s very insightful to work with seasoned professionals such as Dan [Barth-Jones], Colin [Moffatt], and Patrick [Baier]. Similarly to academia, we consistently acquire and develop our knowledge under the mentorship of those with decades of experience who help support us along the way. Dan, Colin, and Patrick, for instance, have extensive awareness of different statistical methods and external risk factors affecting any given data linkage project. Having exposure to their expertise is deeply beneficial to the rest of the team. By working together, we’re able to bounce ideas off each other while collectively able to tap into decades of learnings from conducting HIPAA Expert Determinations.
Privacy Hub’s Value
How do you see Privacy Hub by Datavant’s offerings being unique from the rest of the market?
Trust Between Two Parties Involved in a HIPAA Expert Determination Project
I think one of our greatest assets is the quality of the relationships we’ve built and continue to build with our clients. After all, one of the main reasons why one would seek an Expert Determination over Safe Harbor is the customization element, and in order to properly customize the data linkage output to both protect patient privacy and best fit a company’s needs, it is imperative to establish clear and personable communication between clients and Experts. As privacy and data utility will always be a trade-off, a healthy back and forth is necessary to reach the best way to achieve desired outcomes. Therefore, the better the dynamic between the privacy team and the organization, the more optimal the balance between privacy and utility will be in the final dataset.
Working at Privacy Hub, I’ve found that the relationship we have with our clients is truly special. There’s a very unique (and deeply helpful) sense of trust between the two parties involved in each HIPAA Expert Determination project.
Continuous Investment in Developing Holistic Health Data Privacy Preservation
Another exciting benefit of Privacy Hub is that, through our research and development efforts, we’re continuously moving towards a place in which we can be a full holistic solution to health data privacy preservation.
For instance, the fact that we have the internal capacity to build machine learning models and that we are putting that internal ability to practice is incredibly useful. The application of machine learning technology to the Expert Determination process for unstructured data, for example, is particularly exciting because it can prevent a great deal of loss of utility. Machine learning models can also help to accelerate Expert Determination, as the otherwise manual process is fairly time-consuming. Additionally, I predict that our team’s internal knowledge of consumer data is going to prove deeply valuable in the future, as I know there are significant emerging question marks surrounding consumer data’s relationship with health data.
Overall, I find it really exciting to think of how our research and development towards a comprehensive privacy-preservation solution could help companies large and small, as well as university departments and other entities working with health data.
A Look Ahead
Which areas of health data privacy do you foresee expanding or evolving?
More Privacy Education in the Future
First of all, many developments—such as privacy regulations, data-capturing technologies (such as smartwatches), and data types—will continue to come on quickly, which will leave much room for education of health data users. Beyond that, I think people are becoming increasingly more aware of their data being used, driving them to ask the question, “How does the use of my data benefit me?” The way I see it, alongside doing research and expounding on its respective findings and developments, Privacy Experts will have to invest much more effort into educating people on how their data is being used.
The Benefits of Synthetic Data
In addition, I think that synthetic data [which is information that’s statistically derived from real-world data, maintaining the same characteristics while containing no real patient records] is going to become more widespread in the health data privacy sphere, as there are several use cases it benefits. For example, for those needing to examine data on rare diseases, synthetic data allows for a larger amount of information to be available that a real-world pool would. The fact that synthetic data is based on real-world data both supports research purposes (as the underlying distribution of the data should remain consistent with those of real-world datasets) and is an interesting way to protect patient privacy.
A Future Where Health Data Is Shared for the Better
On the whole, I look forward to the future of health data privacy. I’m excited by the idea of health data being shared in a sensible way. After all, the importance of sharing data (and of doing so in a privacy-protecting fashion) is the most significant lesson from the pandemic, in my opinion. Learning from that, I’m very grateful to be a part of a company like Datavant that enables privacy-preserving health data sharing. I see Privacy Hub becoming a one-stop shop for all things related to health data privacy, and it’s really exciting to think of how all of these needs being addressed in one place will further facilitate health data sharing, leading to a better world.
Privacy Hub by Datavant
Privacy Hub by Datavant is the leader in privacy preservation of health data, offering independent HIPAA de-identification analyses and Expert Determinations as well as advanced technologies and solutions to improve the quality, speed, and verifiability of the compliance process.
Learn about how Privacy Hub can address all your evolving privacy needs.
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Senior Data Scientist, Anca Ionescu, discusses how Datavant employs tailored privacy techniques for various data types and use cases.