Describes a patient care registry and the benefits of implementing a registry in your practice
Summarizes steps to select the criteria for your registry and build a registry framework
Explains how to design practice workflows and train your team to use the registry
Quiz Ref IDA patient care registry is a system to identify and care for patients with chronic conditions and a means of tracking preventive care in your practice. It can be integrated into your practice's electronic health record (EHR), a separate database program, or even a simple spreadsheet that is manually updated.* Patient care registries can be useful at the population level for managing common chronic illnesses like diabetes or hypertension.
A patient care registry can help your practice track high-risk or complex patients to ensure that services are delivered to all patients in a timely manner according to evidence-based guidelines. When optimized, you can use your practice's patient care registry system to create customized planned visit protocols for each patient visit and outreach between visits.
*All patient data is subject to HIPAA regardless of the format of your patient care registry.
Select the Criteria for Your Registry
Build the Registry Framework
Develop Workflows and Train the Team to Use the Registry
Put Your Registry Into Action
Evaluate and Apply Registry Findings
Including your entire care team is important when planning and creating your registry. Nonclinical and support team members may regularly use and create reports once your registry is active; therefore, they must be familiar with its design. Take the opportunity to engage your entire practice during the brainstorming session to determine what an effective registry will look like. As you discuss, consider metrics or values relevant or tied to payment, such as the date of the most recent Medicare Annual Wellness Visit (AWV).
Fulfilling these 5 criteria yields an effective patient care registry:
Include a list of all the patients with the target condition(s) (eg, diabetes, asthma, hypertension)
Show a snapshot of the EHR to detail important clinical parameters and identify the gaps in evidence-based care
Aggregate the results from all patients in the practice with the specific condition(s) to assess the overall quality of care provided (eg, the percentage of patients with diabetes who have controlled blood pressure)
Provide support for outreach and follow-up (eg, for all patients with diabetes who have not had an HbA1c in 6 months, an eye exam in the past year, or a diabetes education referral placed in the past, the system can suggest these items)
Integrate clinical quality reporting into the care process rather than as a separate endeavor (avoid creating new workflows by identifying your current workflows for electronic clinical quality measures (eCQMs) that already align with the target conditions that will be included in the patient care registry)
For any registry system, it is crucial to address patient confidentiality, data privacy, and security requirements.
Figure 1 shows an example of a chronic care registry. The mock data in this sample patient registry can help you learn how to identify care gaps based on the chronic care guidelines you've implemented in your practice. Within the registry, you could flag overdue labs (red boxes in the example), incomplete labs, or labs that are high or out of range for follow-up (red font in the example). You might also highlight diagnoses such as type 2 diabetes or other factors like smoking status to help you monitor specific groups more closely.
For this example, assume the date is June 1, 2023.
Figure 2 illustrates how a patient registry can help you learn how to identify care gaps based on the preventive care guidelines you've implemented in your practice. Within the registry, you could choose to flag outdated or missed preventive screenings or missed Medicare Annual Wellness Visits (AWVs). Yellow indicates a screening or visit that is close to being outdated, red indicates a need to follow-up with the patient. From the registry, you may notice that your practice has some work to do to keep up to date on colonoscopy screenings but that your team is doing an excellent job keeping patients on top of their mammograms and AWVs. This method can help you identify patients who could benefit from more frequent follow-ups.
Use this tool to help you and your team develop your registry criteria.
What can I monitor with a patient care registry?
Your practice should start with one or more chronic conditions commonly seen in your patient panel with well-developed evidence-based guidelines and established clinical performance measures.
Coronary artery disease
Chronic obstructive pulmonary disease (COPD)
Attention deficit hyperactivity disorder (ADHD)
You could also use a patient care registry to monitor preventive services, such as age-appropriate screenings and immunizations, and track social determinants of health.
Can I use a patient care registry for following high-risk or complex patients?
You can use a single patient care registry system to track and follow up with patients identified as high-risk or complex. This approach is more patient-centered than a disease-specific registry. It can be beneficial for supporting care managers, care coordinators, and a care transitions team as they follow those particular patients in your practice. Collaborate with the care managers of patients already receiving other care coordination services to integrate the care into your registry. For example, a registry of patients on opioids for non-cancer pain will help ensure that the patients have current documented goals of care and (if appropriate) updated opioid registry reviews have been completed. Patients with prediabetes who may be considered high risk for eventually developing diabetes are another starting point for a registry.
How can I include multiple conditions in my patient care registry?
To include multiple conditions, use a system enabling your practice to have an all-condition or patient-centered registry. You may want to expand to include multiple conditions in your patient care registry only after your practice has had some experience working with just 1 condition. Once your practice feels more comfortable with the registry process, consider slowly expanding the effort to other chronic conditions and preventive services, such as patients with diabetes and hypertension, on appropriate blood pressure medicines.
The registry should also display all the parameters for a patient with multiple chronic conditions, which helps to identify gaps in evidence-recommended care. Almost all patients in the practice need age-appropriate screenings and immunizations as part of your preventive medicine strategy. If your registry was built outside your EHR system, you need to be sure your EHR data is compatible and that all necessary data privacy and security requirements for legal compliance are in place with any integration.
How is a patient care registry different from a national database registry?
Patient care registries differ from national database registries in 3 fundamental ways:
They are available to the physician and care team during any type of patient encounter to show the current status and highlight gaps in evidence-based care parameters
The information is part of the regular office workflow
They can be designed to feed data into national databases, but the current constructs used by most national database registries limit their ability to provide data in real-time
Most national database registries are designed to collect data, establish valuable comparisons, and provide reports back to practices at regular intervals. Comparison data helps evaluate your practice's performance relative to other practices with similar patient demographics and risk profiles.
Quiz Ref IDReview and select a patient care registry system that fits your current EHR, target patient populations, and practice workflows. The chosen registry should include all the clinical parameters you rely on to make informed medical decisions. The parameters need to be presented in an organized and complete format, allowing you to focus on those aspects of care that require the most attention. You may consider using a generic registry template within your EHR or developing a custom version with a programmer. Working with your EHR vendor to create the registry, instead of developing or buying a separate system, may help avoid workflow problems and requirements for separate logins while meeting security and privacy requirements.
What are some examples of patient care registry systems I could use or purchase?
Many EHRs have existing templates for registry functionality. Connect with your practice's IT team or your EHR vendor to customize your practice's registry template and ensure the functionality is installed and turned on. Additionally, be sure to check with your EHR vendor to evaluate the registry functionality against the 5 criteria listed in STEP 1. Working with your EHR vendor is generally preferable to building a separate registry since the technology already exists within the workflow of the current EHR. If registry functionality is unavailable through your EHR, then stand-alone registries are available.
The 3 essential components of stand-alone registries include:
A database—complete with a server, database management software, and management tools—to store patient information
A data model for organizing and integrating information
Software tools that allow users to sort, manipulate, and create reports from the data
You may purchase each component individually to create a stand-alone registry, purchase them as a package, or use a simple spreadsheet. No matter your chosen approach, you should ensure that your patient care registry is fully integrated into your practice workflow.
What searchable fields must I include in the patient care registry program?
Keep it simple. In addition to the usual demographic data to identify a patient, include the clinical parameters you and other care team members need to make an informed decision about care.
For example, if you are setting up a diabetes registry, you might want searchable fields for:
Body mass index (BMI)
Blood pressure treatment, if any (eg, angiotensin-converting enzyme inhibitor or angiotensin II receptor blocker [ACE or ARB])
Kidney function (albumin/creatinine ratio, eGFR, or creatinine)
Dates and results of dilated eye exams
Dates and results of foot exams
Influenza, pneumococcal, and hepatitis vaccines
Access to nutritious food and safe exercise, or other social needs that may impact health
Who sets up the patient care registry?
Designate a small work group to investigate the available options, the costs, and the functionality. The work group could consist of an IT or EHR specialist and/or a project manager responsible for working with the system or software and clinical team members who offer input but do not manage the day-to-day or setup of the registry. The work group may also help design a workflow and formalize the procedures, roles, and responsibilities for using the registry. Some tasks, for example entering new patient data into the registry, may need manual input. Data entry should be automated wherever possible to streamline data integration into your EHR and reduce duplication of work. For example, lab test results or blood pressure readings from the EHR should automatically populate the patient summary page within the registry and provide a visual cue identifying the result as in or out of range.
Involve the entire care team to keep the patient care registry current and complete. Establish how the team's clinical and nonclinical members should use the registry to follow up on gaps in care and plan for visits to close these identified gaps and provide timely care. Your practice may need to develop new workflows or adapt existing workflows to ensure that the data is correctly and reliably entered and that access is limited to only those who need it, as required by HIPAA.
Everyone on the care team should have access to the registry and be able to use protocols and standing orders to identify and address patient care needs. Designated team members, such as physicians, nurses, medical assistants, care managers, or panel managers, should be well-trained in executing their role in managing the registry to improve data reliability, consistency of care, and patient outcomes.
Implementing team-based care fundamentals will teach your team the skills to share tasks, including managing the patient care registry. An exercise in creating a process map can help your team visualize the registry use workflow or pinpoint how the workflow might help you address gaps in care identified by the registry.
Use this guide to learn easy ways to create a process map for your practice.
What training does the team need to ensure patient care registry data is accurate and reliable?
Ideally, the practice should train 2 individuals to be registry specialists who understand all the ins and outs of registry implementation, maintenance, and daily integration into the workflow. Ask your vendor about their training options if you use an EHR-based registry. You may find additional registry training as part of population health and care coordination curriculums. The 2 registry specialists should be responsible for sharing their knowledge with everyone on the care team. Much of the training will involve educating the care team about what information flows from the EHR into the registry and how to verify the data is accurate and complete. Some manual tasks may be required in the initial setup process or when entering a new patient into the registry. For more information about using a registry to improve care, see the AMA STEPS Forward® toolkit on panel management.
How can I incorporate the patient care registry into my existing workflows to maximize impact?
Implementing a patient care registry is just one of many systematic changes you can make to improve practice efficiency and effectiveness. As you consider the design and implementation of your registry, there may be some overlap and synergies in workflows. Other AMA STEPS Forward® toolkits can help guide how your patient care registry might integrate with or facilitate pre-visit planning, expanded rooming and discharge, and panel management. Combining these approaches with the registry should yield efficient, comprehensive, and effective care for patients with chronic conditions.
When implementing your new registry, your practice may start by focusing on one specific condition, such as diabetes. Using a phased approach allows the team to adapt to the patient care registry and new workflows. Begin by assembling a list of patients with that condition, then add the list of patients to your patient care registry. If the number of patients in the registry is too large to manage at first, narrow the list by adding additional criteria. For example, you may want only a registry tracking patients with diabetes between 40 and 65 years old. Update the registry consistently as patients are added to the practice, or you make new diagnoses. These updates could be automated if your registry is integrated with your EHR. Other formats may require manual updates. As the registry grows, it will become more useful for monitoring EBM care and facilitating outreach.
You could collect pertinent information in a spreadsheet until you select a software package. Be mindful of data privacy, security, and any legal requirements for collecting patient data. Your team may find that it is more comfortable starting with a spreadsheet and then moving to the registry function in the EHR.
If your practice is starting out with a spreadsheet as a patient care registry, you can customize this template to suit your practice's unique needs.
Ideally, 2 people should be responsible for ensuring the registry is working correctly and used by all. Every care team member should contribute to its maintenance by entering information when missing fields are identified—the more complete the data, the more effective the registry.
In addition to providing more efficient and effective care for your patients with chronic conditions, registries can help with quality improvement efforts. For example, if you learn from the registry that only 50% of your diabetic patients have their blood pressure under control, you could adapt your treatment approach, initiate a health coaching program, or pursue a more active follow-up approach with these patients. You can then use the registry to track whether these process changes improve the percentage of patients whose blood pressure is under control. Depending on the sophistication of your patient care registry, you could generate the following types of reports to improve your practice:
Patient reports at the time of the visit
Exception reports to flag patients not meeting management targets
Progress reports for care team members to measure care delivery
Population reports to monitor and stratify at-risk patients
Properly using a patient care registry improves practice efficiency, enhances patient care, and reduces liability risks. Additionally, patient care registries provide valuable data for value-based care reporting and metrics.
How do I make sure our patient care registry is adaptable and sustainable to meet ever-changing practice and payer standards?
As your practice starts to feel comfortable with the existing registry, let your patient population and practice priorities guide expansion to include another chronic condition. The registry function and process can be repeated across patient populations and disease and/or condition categories. Adding new conditions and patients should become easier with each process iteration. If clinical performance measures change or regulators or payers add more measures, you will need to actively manage parameter modifications, or the acceptable ranges set in the system.
Doesn't the patient care registry just add more work for everyone? What is the advantage?
As with any new workflow change, you may experience more work in the initial stages; however, the benefits your patients and practice can experience far outweigh the additional work in the beginning. A well-functioning registry can reduce the work you must do to identify what EBM care your patients need.
Common benefits of implementing a patient care registry that meets all 5 criteria may include:
Better continuity of care patient care and improved patient satisfaction
More even distribution of work across the care team
More efficient practice workflow
Improved engagement of the whole care team who feel a sense of duty and responsibility
Active participation in patient care by the entire care team through the use of standing orders and established protocols
Elimination of data-gathering activities by the physician during the patient visit
Clear presentation of clinical parameters that are out of range so that the physician and care team can focus on the areas that need the most attention
Potential revenue capture for pay-for-performance or other value-based payment models
A patient care registry can allow you to be proactive—rather than reactive—in your approach to providing care to patients with chronic conditions, including preventive care. This organized approach to tracking and reporting specific disease measures and management will help you and your practice team reveal opportunities for improvement and the delivery of better and more efficient care to your patients.
Journal Articles and Other Publications
Bagley BA, Mitchell J. Registries made simple. Fam Pract Manag. 2011;18(3):11-14. https://www.aafp.org/fpm/2011/0500/p11.html
Yang M, Loeb DF, Sprowell AJ, Trinkley KE. Design and implementation of a depression registry for primary care. Am J Med Qual. 2019;34(1):59-66. doi:10.1177/1062860618787056
Constructing an asthma registry [download]. American Academy of Pediatrics, Improving Chronic Care. Accessed March 19, 2023. https://downloads.aap.org/MedHome/doc/astregis.doc
Surbhi S, Brooks IM, Shuvo SA, et al. A mid-South chronic disease registry and practice-based research network to address disparities. Am J Manag Care. 2020;26(7):e211-e218. doi:10.37765/ajmc.2020.43764
Improving clinical processes and effectiveness of care through creation of a disease-specific registry. Health Catalyst. September 26, 2017. Accessed March 19, 2023. https://www.healthcatalyst.com/success_stories/chronic-disease-registry-provides-data-to-improve-care
Registries and information systems for diabetes care in the WHO European Region: preliminary findings for consultation. World Health Organization Regional Office for Europe. 2021. Accessed March 19, 2023. https://cdn.who.int/media/docs/librariesprovider2/euro-health-topics/diabetes/registries-information-systems-diabetes-consultation-eng.pdf?sfvrsn=d9f3551f_2&download=true
Computerized disease registries. Agency for Healthcare Research and Quality. Digital Healthcare Research Archive. February 2015. Accessed March 19, 2023. https://digital.ahrq.gov/key-topics/computerized-disease-registries
What is a disease/immunization registry? HealthIT.gov. Reviewed January 15, 2013. Accessed March 19, 2023. https://www.healthit.gov/faq/what-diseaseimmunization-registry
Prediabetes and Type 2 Diabetes
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