Having a patient registry is not enough. You need to set it up for success. A patient registry transforms real-world healthcare data into real-world evidence that doctors can then use to relay better treatments to patients. Given that patient registries are used for healthcare, it is important to ensure patient registry success.
Patient registries have been around for a while. There are several registries catering to different conditions like Alzheimer’s disease, Congenital Heart Disease, Lupus, and others. Since these patient registries have a significant impact on healthcare, how do you set your patient registry up for success?
What Characterizes Patient Registry Success?
A successful patient registry is one that evidently improves healthcare. The basic idea of any patient registry is to achieve the purpose it was set out for, whether it is to understand the course of a disease or drug development.
There are several key metrics that measure patient registry success. If you invest time, money, and effort, you want the registry to achieve the best results. These metrics could be divided into performance measures and results.
Performance Measures
Performance metrics inform you whether your patient registry is off to a good start in the early phase. If your registry does meet these metrics, you can make the desired changes to achieve maximum efficacy before it’s too late.
These performance metrics include:
- Number of participants
- Quality of feedback from participants
- Data growth rate
- Volume of data received
While these metrics are important, they are not the only way to set your registry up for success. You will also need to see the measurable results.
Results
The patient registry output will decide whether your patient registry is successful. Here are some measurable results:
- Registry engagement
- Published articles citing registry data
- Changes to healthcare data using registry data
How to Set Patient Registry Up for Success?
Now that you know how to measure patient registry success, let’s look at some ways that you can make it possible.
First of all, you need to choose a secure and flexible patient registry software solution that can easily adapt to any organization and its workflow. The patient registry should pave the way for easy data collection that could be tailored to your unique needs and registry goals. Make sure the registry software is HIPAA-compliant so that patients feel secure participating in it. Since the number of participants is crucial to patient registry success, this should be an important consideration when choosing registry software.
Secondly, it is important to clearly define the patient registry goals. Make these very specific to avoid any confusion and discrepancy. For example, is your patient registry targeted to improving Treatment A for X disease, or is it to understand the etiology of a disease to develop a vaccination for said disease?
Lastly, you need to know how to measure the patient registry’s performance so you can bring about changes as needed. Constantly measuring your patient registry against performance metrics will increase the chances of registry success.
