New Jersey uses data to improve population health

This article was originally published by The Pew Charitable Trusts.

Data helps state agencies and policymakers make informed decisions about the policies and practices that protect the health and safety of their communities. In New Jersey, the Integrated Population Health Data Project (iPHD) aims to improve the overall well-being of residents and the efficiency of state government by securely linking administrative datasets to support research.

The New Jersey Department of Health contributed the initial funding and datasets to support the design and implementation of the iPHD. Now, the project is working to meet researchers’ needs by expanding its data to include other departments and agencies.

To learn more about this work, The Pew Charitable Trusts spoke to Margaret Koller, executive director at the Rutgers Center for State Health Policy, and Rachel Hammond, the chief ethics, data privacy, and research integrity officer for the New Jersey Department of Health. As part of their roles, Koller directs the implementation of the iPHD and Hammond chairs the iPHD’s governing board.   

This interview has been edited for clarity and length.

So Margaret, you’re one of the leads on the iPHD. Can you give me a brief overview of the project and the goals it was established to meet?

Koller: The iPHD is an integrated data system New Jersey created by statute in 2016. The goal of the project is to harness the capability of health and administrative datasets to create a more comprehensive look of a person’s interactions with New Jersey’s health services systems.

A lot of data that can be used to better understand individual and community health are siloed across various departments and agencies. But with the iPHD, we’re able to link some of that data and break down some of those siloes to improve population health and the efficiency of state government programs. We already have more than 90 million records that have been linked at the person level.

What role did that legislation play in establishing the iPHD?

Hammond: Legislation is probably the most vital component to getting something like the iPHD project up and running. It lays out clearly how datasets that are shared with the iPHD will be used and, importantly, how they’ll be protected.

Koller: Being able to point to the legislation when speaking to agencies outside of the Department of Health is important. Other agencies are not compelled to put their data in the iPHD, so it’s much easier to initiate conversations when you have legislation that clearly defines our goals and mandates.

It also acknowledges the capacity of the Rutgers Center for State Health Policy to lead this work because we are named in the legislation as the entity that will oversee the operation of the iPHD.

What is the value of linking multiple data streams from the New Jersey Department of Health under this one umbrella?

Koller: It creates a more complete understanding of how people navigate and use different services in New Jersey’s health care delivery system. It also helps us identify underlying conditions or barriers to accessing care.

Hammond: Data lends itself to being divided into siloes. Data collected by different agencies can have different confidentiality requirements, different funding streams, different legislative mandates, and so on.

The iPHD helps break down these siloes by collecting data from across departments and agencies and making it available in a limited dataset or without identifying information. That way, you still have the value and holistic picture that the data creates, but you’re protecting people’s data privacy as well.

Koller: That’s a great point. Data privacy and security is not a secondary priority. It is of equal value to collecting data and putting it together in limited datasets that are de-identified for research purposes.

So what kind of challenges has the iPHD faced since its inception and how have you overcome them?

Koller: Funding is a big one, and we’re lucky to have Rachel advocating for us in the administration. She’s spearheaded the continuous support from the New Jersey Department of Health. We’ve been through five or six commissioners since the iPHD started, and Rachel has been able to really advocate for us and make sure that the funding support for the iPHD has been preserved in the annual budget.

One more thing we’re always thinking about is forecasting what’s coming down the pike. What data should we really prioritize integrating into the iPHD that’ll be interesting and meet our researchers’ needs? It takes time to build the relationships and trust to get data from other departments, and then it takes time to process the data and create those de-identified datasets. So, we’re always trying to think ahead.

Have there been any challenges that surprised you?

Koller: The one thing that has surprised us is the kind of data researchers are asking for. When we started the iPHD, we just focused on data from the Department of Health, which was our legislative mandate.

But over the last year and a half, we started seeing more requests for third-party linkage. People are saying, “OK, the iPHD dataset is great, but we also want to connect it to a Medicare CMS dataset or a Child Protective Services file at a geographic level or the Medicaid data.”

That’s where data linkage is going, so we’re trying to find the balance between what is feasible to include in the iPHD and where users’ needs are headed. It’s all about setting priorities.

Rachel, you chair the governing board that oversees the iPHD. What role does the governing board serve?

Hammond: The governing board is responsible for oversight of the entire project. The team at the Center really does all the heavy lifting of operationalizing and managing the project, and the governing board does the lifting relative to overseeing it.

Specifically, the governing board determines what data is appropriate for inclusion in the iPHD project. That’s one of our statutory charges. We’re also responsible for policy development and adoption relative to our data governance, access, privacy, and security. We also adopted and implemented the criteria for approving researcher applications requesting to release data, pilot projects, and fee waivers.

Koller: I think something that really works is the environment of trust that the governing board creates. We’re always talking about process improvement—things that we think we could do better or differently or more efficiently, so that we can continue to grow the iPHD and still be able to service it as we do now. As part of that, we at the Center have the freedom to go to the governing board and give feedback on what we think could work better. That environment of trust and accessibility to the board members is a great benefit for our team at the Center.

Can you give an example of a recent research finding that used data linked by the iPHD?

Koller: We have a faculty member in the School of Public Health at Rutgers, Slawa Rokicki, who used the iPHD for her research on perinatal depression associated with increased pediatric emergency department (ED) use. Using hospital discharge records and birth records, she found that, compared with infants who had mothers with no symptoms, infants with moms with mild or moderate-to-severe depression symptoms had significantly higher overall non-emergent ED use.

The positive association between depressive symptoms and ED charges were particularly striking for kids on Medicaid, which pays a disproportionate share of the pediatric ED costs in in the United States.

This research contributes to thinking about the importance of perinatal depression screening and how that correlates to pediatric ED use and outcomes for infants. It can help inform Medicaid policy and policies around preventive programs, such as perinatal depression screening.

Why did you see value in expanding the datasets beyond the New Jersey Department of Health?

Hammond: Determining what data is appropriate for inclusion in the project is one of the governing board’s specific charges. I think we’re always thinking about diversity, equity, and inclusion because we want to make sure that we’re including vulnerable populations in our effort to link data in a way that creates this whole-person view.

So, for example, with data from the Department of Children and Families, we want to make sure that we understand the health challenges that are faced by vulnerable populations such as foster children because addressing those challenges could be incredibly helpful in providing better services and better care.

The iPHD legislation specifically envisions this as a statewide integrated data project, so this is part of the natural evolution beyond Department of Health data.

In the future, we look forward to integrating administrative data from other state agencies that can paint an even more vivid picture of the services and programs that New Jersey residents use and how that might impact health and well-being. 

How does integrating these additional datasets contribute to better outcomes for New Jersey agencies and New Jersey residents?

Hammond: Ultimately, the data can and should lead to better policymaking. We want the state to be able to optimize resources and cost efficiency. We’re hoping to use insights from this research to enhance our public health interventions and improve health equity.

What would you tell other states who are interested in either setting up or better leveraging their own cross-sector data integration projects?

Hammond: One thing to me that’s incredibly important is having a data privacy officer, especially in health and human services agencies, who works to protect the privacy of people whose information is sitting within those agencies and to facilitate the data’s legal and ethical use and sharing.

The other piece of advice, as we discussed earlier, is having legislative authority to fall back on, and I would hold up New Jersey’s legislation for the iPHD as a really great example.

Koller: Setting up a project like this takes time. It’s not a sprint, and if you think it is, you’re likely not going to succeed. I can almost guarantee you of that.

It’s about relationship building and trust building. Don’t expect that people are going to trust you just because you flash your academic credentials. Understanding how to do these kinds of data linkages is necessary, but it’s not sufficient. Cultivating the relationships and trust with other agencies, departments, and researchers that is required for making the iPHD successful takes time.

One of the things I’ve learned is that when data is in a silo, it’s not because people don’t care about the impact of using it. Most of the time, the people I interact with are well-meaning, well-intentioned, and care deeply about doing good for our state. The siloing within departments or agencies is often a consequence of staff being overworked and under-resourced. If the iPHD can be a bridge and create that connective tissue, that will be our definition of success.

Is there anything else you’d like to say?

Hammond: This is such an amazing project, and I’m so honored to be a part of it. I know that someday when I retire, this will be one of those projects I look back on with immense pride—a true highlight of my career.