Harnessing everyday data to improve care
Across Northern California, Kaiser Permanente’s oncology departments treat thousands of cancer patients each year. Of these patients, only several dozen have the rare condition amyloidosis. Striving for continuous improvement, oncology department leaders at one of Kaiser Permanente’s medical centers sought to ensure that when a patient is diagnosed with amyloidosis, he or she receives the benefit of consulting with one of the department’s three dedicated oncologists who are experts in this condition. The first step in implementing this quality improvement process was to create a “miniregistry” — or database — of all of the group’s patients with the condition and the providers who diagnosed them. The oncology department then automated the list so that every time a patient is diagnosed with amyloidosis, the specialist team is notified and can reach out proactively to the diagnosing oncologist to provide expert support and guidance.
Miniregistries help doctors care for patients by harnessing everyday data and organizing it so that it can be used to answer questions about care processes and inform quality improvement. Miniregistries embed learning within the very infrastructure of the delivery system so that every single patient encounter adds to a usable knowledge base.
What is a miniregistry?
To understand what a miniregistry is and how it works, it is important to first understand how it is related to a disease registry. Also called a “patient” or “clinical” registry, a disease registry is a database used to improve patient care. It includes standardized information about all the patients with a specific condition or treatment within either a given health system (or hospital) or geographic region. Kaiser Permanente’s Total Joint Replacement Registry is an example of a health system-based registry.[i] The California Cancer Registry, with data on all cancers diagnosed in California, is an example of a registry based on geography.[ii]
In the clinical setting, registries let physicians track patients and identify gaps in care. They also provide clinical leaders with metrics that inform priority-setting for quality improvement.
When combined with rigorous research methods, registries may also be used to analyze the comparative safety and effectiveness of treatments or devices. For example, through its Total Joint Replacement Registry, Kaiser Permanente examined patient outcomes from partial versus total knee replacements, finding better results with the latter.[iii] This finding has informed subsequent clinical practice.
Miniregistries serve the same purpose as other disease registries—collecting data and providing feedback about care processes—but on a more limited basis. They generally contain data on rare diseases, such as pediatric oncology and sickle-cell anemia, or uncommon manifestations of common diseases, such as breast cancer with a particular gene expression. Data from miniregistries provide information on low-volume but critical questions that can arise in the treatment of rare conditions.[iv] They are “mini” by their very nature — containing data on dozens or hundreds of patients with a particular condition, rather than the thousands or millions found in traditional disease registries. They also track fewer data points than traditional disease registries, focusing only on information needed to address a specific clinical need or question.
How did Kaiser Permanente develop miniregistries?
Registry development is normally very costly, requiring intensive collaboration among professionals, including data experts with extensive training in the relevant clinical area. Such a staffing model can be cost-prohibitive for the support of a miniregistry in a low-volume clinical area. To address this problem, Kaiser Permanente created a relatively low-tech registry-development platform that streamlined input from specialist physicians and reduced dependence on data experts.
Members of Kaiser Permanente’s miniregistry development team surveyed leaders in targeted clinical areas to determine what questions physicians wanted answered, and what data would be required to answer them (for example, diagnostic codes, laboratory tests, and notes about clinical treatments). Data specialists then wrote algorithms in structured query language to extract data from the electronic health record (EHR) and used statistical analysis software to aid in data processing. Specialty physicians contributed expert clinical opinion during all stages of this process.
By using the platform — described in detail in an article by Lisa Herrinton and colleagues — Kaiser Permanente has been able to develop miniregistries in as little as two weeks.[v] To date, the organization has developed miniregistries in various departments throughout Northern California, including oncology, rheumatology, cardiology, and pediatric endocrinology. The miniregistries receive data directly from Kaiser Permanente’s EHR and can be updated automatically. In keeping with the low-cost, low-tech approach, Kaiser Permanente uses the registries to generate data reports in Excel spreadsheets that are then sent to relevant clinical leaders via email.
How does Kaiser Permanente use miniregistries?
As described in the introduction, an oncology department in one Kaiser Permanente region used a miniregistry to improve care processes for patients with amyloidosis. Other examples of the organization’s early success with miniregistries include:
- A rheumatology department within Kaiser Permanente is using a miniregistry to improve care for patients with gout. The miniregistry will allow physicians to create a list of patients with high levels of uric acid who require additional laboratory testing.
- A pediatric oncology department used its miniregistry to improve the transition from pediatric to adult cancer care. They generated a list of teenage patients scheduled for transition within the next year — one of several tools used to understand and improve the care transition.
- An ophthalmology department created a miniregistry of patients receiving cataract surgery so that it could track surgical site infections after surgery. The miniregistry has let the department implement a zero-infection campaign. Reports from the miniregistry help physicians identify and implement processes that reduce the likelihood of infection.
What’s next for miniregistries?
Kaiser Permanente continues to refine and develop miniregistries with input from specialty departments. The platform is a low-cost, low-tech innovation that other health care delivery systems with EHRs could readily adopt. The greatest barrier to adoption may simply be the many other competing demands on delivery system staff with expertise in EHRs and data analysis. Strong clinical and administrative leadership are needed to make registry development a priority and to secure necessary resources.
[iii] Paxton, E, Inacio, M, Khatod M, et al. Kaiser Permanente National Total Joint Replacement Registry. The Permanente Journal. October 2010; 468(10): 2648–2654. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3049637/.
[iv] Herrinton LJ, Liu L, Altschuler A, Dell R, Rabrenovich V, Compton-Phillips AL. Big Data, Miniregistries: A Rapid-Turnaround Solution to Get Quality Improvement Data into the Hands of Medical Specialists. The Permanente Journal. Spring 2015; 19(2): 15–21. www.ncbi.nlm.nih.gov/pmc/articles/PMC4403576/.