Address Potential Privacy Concerns
KASPER began sharing its data with the Division in 2007, through Kentucky's Data Warehouse for Substance Abuse Prevention. Shortly thereafter, privacy concerns led state officials to take legal action to stop the process.
“There was concern that the data might make it possible to identify individuals from small, rural communities with a single pharmacy—and we didn’t have clear guidelines in place to allay their fears,” says Steve Cambron, former Strategic Prevention Framework Grant Coordinator.
Though the issue was eventually resolved with clear assurances from outside experts, the incident highlighted the importance of establishing clear data-sharing guidelines from the outset. “We lost a year of data access because we weren’t prepared to address privacy issues,” says Cambron. He suggests bringing in data experts to ensure that data-sharing agreements comply with HIPAA* privacy rules.
Formalize Your Relationship
After several years of sharing data informally, the Division of Behavioral Health invited KASPER to join the state’s epidemiological outcomes workgroup (SEOW)—a collaborative group of agencies and individuals focused on collecting and using data to inform and enhance prevention practice. Formalizing their relationship was a win-win for both groups, providing the SEOW with valuable data and data expertise, and KASPER with an opportunity to join the Division’s prevention planning team.
“[KASPER] has been an integral part of our SEOW for several years now,” says Millspaugh. “Their involvement has been incredibly vital to the prevention planning process—not just because of what they bring to the table, but because of their knowledge and understanding of how to work with data sources.” She encourages other states to invite their PDMPs to join their SEOWs or advisory panels “sooner than later” to clearly communicate the value of their data. “They need to know we can’t do it without them—that without the information they collect, our prevention efforts would be hugely misinformed.”
Don’t Overburden Your Partners
The Division worked closely with KASPER to develop a reasonable schedule for sharing data. Together they decided that KASPER would prepare a data report for each of the SEOW’s quarterly meetings. This timeframe was frequent enough to support the Division’s planning efforts without inconveniencing KASPER staff. “The quarterly format allows us to see trends sooner than would be the case if we had a biannual or an annual format,” explains Millspaugh. “It’s helpful for us and it doesn’t burden the KASPER system.” In addition, KASPER provides the Division with “real time” data updates when they need it. “We have a great relationship with them. They trust that we’re not going to over-reach and they know we’ll use their data well.”
Find Additional Ways to Connect
Because the only formal times the Division and KASPER get together is at quarterly SEOW meetings, Millspaugh encourages her staff to find additional opportunities to connect. “Any time you work with another state or any government agency, it forces you to get out of your ‘silos’—but that only happens with time, effort, and food.” Fortunately, the Division of Behavioral Health is located in the same building as KASPER, making water cooler conversations and lunch dates fairly easy.
The KASPER-Division partnership is further strengthened by joint participation on several cabinet-level opioid overdose workgroups. These “outside” opportunities to work together gives the prevention team a fresh perspective on the PDMP and the data it collects. “Even though we understand pretty well what KASPER’s doing, being in these groups with them, and hearing them present data that’s a little different from what they provide us, is an important learning opportunity.”
Create Memoranda of Understanding
Finally, Millspaugh underscores the value of creating memoranda of understanding (MOU) with PDMPs to protect and sustain established partnerships. “[Administration changes] can really change the tone and tenor of a division. Having an MOU in place reminds new leadership that the relationship exists, it’s fruitful, and there’s a commitment to it continuing.” MOUs can help partners articulate the purpose of their collaboration, as well as their roles and responsibilities. MOUs with PDMPs, in particular, should also clarify how frequently the PDMP will share data, what data they will share, and how often partners will meet.