With the growing digitization of the patient record and care in general, the medical registry has become increasingly important. Having a centralized data repository tailored to a specific set of clinical questions offers opportunities to conduct outcomes-oriented research, satisfy regulatory requirements (e.g., PQRS), develop educational resources, and much more. However, realizing these opportunities remains a challenging task—especially as the amount of available data increases. Although many software platforms promise they’re the answer to this challenge, it’s a software vendor’s experience with clinical research data that can make or break a registry’s success (or budget!).
But why is a vendor’s experience supporting medical registries so critical? Because a high-quality registry demands so much of its technological infrastructure. More specifically, the informatics infrastructure should simultaneously meet complex requirements1:
- Technical interoperability: It must seamlessly facilitate data transfer between collection sites, data managers, and researchers.
- Semantic interoperability: It must standardize the format of the information transferred so all stakeholders understand the information in the same way. For example, the software should be able to reliably integrate both electronic health record and claims data, standardizing it to reflect internationally-recognized Health Level 7 formatting guidelines.
- Process interoperability: It must securely manage user credentials and facilitate data visualization and exploration.
Given that simultaneously meeting these requirements is a complex task, it’s clear that the human element—the vendor behind the software—can make or break a registry’s success.
Considering such concerns for interoperability, those trying to establish or maintain a registry must evaluate the potential viability, productivity, and adaptability of a relationship with a software vendor. In assessing a potential long-term partnership, a vendor must (at least) be asked the following questions:
- Who owns the data?
- What are the software licensing terms?
- Are there submission fees?
- What happens if you go away?
- What happens if I want to move some functions in-house?
With these questions in mind, Prometheus Research offers a combination of customizable database software and analyst experience to meet a registry’s need. And by drawing from a history of clinical research informatics experience, the Prometheus Research team can offer these resources with both near and long-term data quality—and budgets—in mind. Ultimately, Prometheus Research can facilitate a true partnership where:
- The client owns the data, always;
- There are no software licensing fees;
- There is a nominal one-time set-up fee per provider for PQRS submissions;
- Experienced analysts can configure flexible database functionality to meet a registry’s individual needs;
- The partnership and Prometheus Research’s role continuously evolves, particularly as the data, research, and resource landscapes change.
Fortunately, Prometheus Research has proven its commitment to these principles, and more generally to establishing a viable partnership with a registry’s stakeholders; the team’s experience doing so stems from successful, ongoing partnerships with the Simon Foundation’s Autism Research Initiative, Weill Cornell College of Medicine and New York Presbyterian Hospital, and more. Altogether, Prometheus Research offers both the technological platform and informatics personnel critical to a registry’s long-term success.
For more information and case studies on Prometheus Research’s partnerships with clinical data repositories, email us at firstname.lastname@example.org.
- EHR Interoperability Work Group (2007). Coming to terms: Scoping interoperability for healthcare. Technical report on for Health Level Seven. http://www.hln.com/assets/pdf/Coming-to-Terms-February-2007.pdf