Otolaryngology has entered an exciting era where data science can revolutionize our specialty. —Jedidiah J. Grisel, MD
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November 2019
Another group used our registry to explore how the time between cochlear implant candidacy evaluation and surgery varies for children with private insurance compared to those with state-funded insurance. These clinicians were able to clearly demonstrate that deaf children with state-funded insurance suffered significant delays in obtaining access to sound. These arguments were very persuasive when advocating for policy changes in the cochlear implant authorization process.
Clinical registries are a powerful way in which otolaryngologists can unite to advocate for our patients and our specialty.
Lesson 2: Balance Is Key
The value of a registry depends entirely on the data that feeds it. In our case, much of the data surrounding cochlear implant care simply does not exist in an extractable format within the electronic health record (EHR). For this reason, our group created its own web-based, HIPAA-secure clinical application to capture data. This process allowed us to customize exactly which data elements to include in data collection, making for robust datasets.
Customized data entry forms, of course, have disadvantages. These forms must be manually completed, which represents a tremendous hurdle in achieving a sustainable, long-term registry. Even the most committed clinicians struggle to allocate resources to consistently and accurately enter data. Manual data entry also increases the cost of maintaining a registry. Clinicians must either shoulder the cost of data entry themselves, or funds must be available to support this process. We have utilized both methods with our registry, and both methods can limit sustainability.
The ideal registry would identify strategic data elements that are readily available for passive data extraction, yet would still offer valuable clinical insight. Passively extracting poor quality data is not helpful. Manually entering data strains the resources of busy clinicians. Finding the proper balance is the key in achieving an effective clinical registry.
Lesson 3: Registries Are Expensive
There is no easy way to put it—registries cost money. Effective registries will likely cost more than most of us expect before they start generating a return on investment. Hyperspecialized registries require manual data entry, which is expensive. Passive data extraction requires sophisticated software. Both types of registries require secure data storage. Biostatisticians, data scientists, and clinical researchers are needed to make sense of these mountains of data. The costs associated with effective registries are not insignificant. Without proper planning, these costs can threaten a registry’s survival before it matures into a revenue-generating asset.
Many clinicians cringe at the concept of monetizing large datasets. The reality is that a poor or unsustainable financial model is still the most likely cause of a registry’s demise. The challenge for our specialty moving forward will be how to ethically create sustainable financial models surrounding registries.