Institute for Healthcare Improvement: Establish a Registry

Tips

Whatever system is used, there must be a consistent, methodical process for assuring that ALL data gets into the registry. The process needs to be written out, and all staff need to be trained on the process.
Choose software that can capture needed data from existing computer systems and is within budget. Keep manual data entry to a minimum. Whenever possible, transfer information electronically from systems like appointments and billing.
Visit a center with a well-implemented patient registry.
Remember that a registry is NOT an automated medical record. A registry is a repository of essential care elements based on a care guideline.
Identify team members with good computer skills to manage the registry and train others how to use it.
Prior to developing the registry, sit down with pen and paper and list all elements that need to be included. Involve as many individuals as possible to generate a list, and then ask everyone involved to prioritize the list. Start only with what is essential. Including data for data’s sake will be overkill and will frustrate the people trying to use the registry.
Make sure that your registry will also be useful for reports:
- Quality Improvement projects
- Provider feedback
- Grant applications
- Financial management
Use precise and consistent definitions for each key measure. Make sure you capture information required by accrediting bodies or managed care organizations. For example, NCQA requires use of both hospitalization rates and use of inhaled anti-inflammatory medications.
Start small, but make sure you have the capability to add new data elements as guidelines change and providers become more sophisticated. Do not overwhelm people with too much information at first.
Contact the Healthcare for the Homeless program and the Migrant Clinicians Network to obtain information on items to include for mobile populations.
Keep the template simple and easy to use.
Keep a notebook near the data entry point.
Try to include all patients with asthma, even if the practice does not recognize or claim them. Most providers dramatically underestimate the number of patients with asthma in their patient population. In the provider column, use a “code” to indicate if the patient is inactive; you can change the code when the patient is followed up.
Work with information systems experts to develop ways to update the registry monthly, based on billing, pharmacy, and lab data. For example, one team developed a Registry Workgroup that consisted of the team leader, Information Systems, pharmacy, lab, medical records, and front office to identify available data and develop a written process for how the data would flow in their organization.
Review the registry for accuracy. If too many people with asthma are missed, providers will not trust the registry. Test the registry early and on a regular basis to maintain integrity of the data.
Tie the registry update process to standard forms to be completed when a patient dies or is removed from the clinic roster.
Ensure patient confidentiality. (Do not write or type “Asthma” on the outside of the chart.)

	Home > Topics > Chronic Conditions > Asthma > Changes > Individual Changes