Study Rationale:
We want to improve the quality of data being collected by the California Parkinson’s Disease Registry (CPDR). The CPDR now requires all clinicians in the state of California to report cases of Parkinson’s disease to better understand how many people have Parkinson’s and identify risk factors for developing the disease. Although CPDS is successful in collecting large numbers of cases, the accuracy and quality of the data is considered limited.
Hypothesis:
We propose that a multidisciplinary collaboration will be able to set a framework of standards, clinical decision support, patient engagement, and electronic health record tools that will improve the accuracy, validity, and completeness of the CPDR within natural clinical workflows.
Study Design:
We will assemble a collaborative group of primary care clinicians, neurologists, patient advocates, researchers, and informaticists (specialists in how to use data and information to improve human health and the delivery of health care services) who have experience with electronic health records. Working together, we will establish, design, test, and implement a set of standards, workflows, and tools in our electronic health record (EHR) system. These processes will help clinicians take better care of patients with Parkinson’s and will include tools for patients to contribute their own symptoms and history to the data reported to CPDR. The resulting product will be enhanced automated reporting of data to the CPDR within natural clinical workflows.
Impact on Diagnosis/Treatment of Parkinson’s disease:
As quality of data within the CPDR improves, we anticipate that the data collected will be able to not only identify Parkinson’s cases with improved accuracy for epidemiology purposes, but also develop algorithms for identifying appropriate patients with Parkinson’s for clinical trials and other research. In the long run, we hope that our work will be able to gather information that will help assess and improve the quality of care for patients with Parkinson’s throughout their lifetime.
Next Steps for Development:
Success in this project will demonstrate an effective framework for standardization, operationalization, and validation of information that can then be transferrable via toolkits to other medical centers with an EHR system. Success will also demonstrate how a collaborative model can function. This will allow for development of future enhancements to the CPDR. Our work will then be able to guide development of other Parkinson’s disease registries in other states, and eventually, at a national level.