A patient registry is organized data collection for the purpose of evaluation of specific outcomes for a defined population. Patient registries are able to provide a real worldview of clinical practice, effectiveness, patient outcomes, and so forth. But for a patient registry to be successful, you need to follow certain protocols. This guide will shed light on the best practices for patient registries.
There are some key factors that need to be taken into consideration during planning and designing a patient registry. With these goals in mind, you will be able to achieve the purpose for which patient registries are built.
Improve Accessibility to Patient Registries
To really excavate any benefit from patient registries, you need to ensure you improve the accessibility of patient registries to multiple stakeholders, including patients or payers, not just the researchers who designed the registry. This is important as it helps ensure that the design of the patient registry does not alter the treatment pattern or patient outcome.
The data you collect from the patient registry needs to be transparent, and this needs to be the focal point when you are planning, designing and executing a patient registry for success. Ensure that the data collected is reliable and transparent without you having to invade the confidentiality of the patients involved. For this aspect, you should choose a reliable patient registry software solution.
Keep Essential Questions in Mind
When you design a patient registry, there are some specific essential questions that you should keep in mind. So what is the first thing you would consider? Who is the end user of this research or product, if you must? What is the purpose of this registry? How does this design help us achieve this specific goal? Other questions should address any gaps in the available evidence.
Consider Stakeholder Requirements
When you design a patient registry, keep the stakeholder requirements in mind so that it is conducive to your ultimate goal. The stakeholder requirements could include improving the quality of patient care, acquiring feedback from patients, reducing treatment cost and other.
Identify Qualified Physicians
In order for a patient registry to be successful, you need to choose the most qualified physicians. Some factors you should consider when looking for the ideal physician are their qualifications, experience in practice, prior experience with the sponsor, experience in handling patient registries and so on.
Patient recruitment is by far the biggest challenge when it comes to patient registries. Organizations or individuals must plan this during the planning step of the registry. Some methods that you can use to recruit the right pool of patients include:
- Establish communication with patients how their participation in the said registry will help improve patient outcomes and care for people battling the same disease
- Ensure that the forms and surveys are brief and to the point to avoid any complications
- Make sure all patient material is easily comprehensible by a layman
With these best practices for patient registries, you can set your patient registry up for success.