Improving care seems like a monumental undertaking. It sounds expensive. It sounds overwhelming. But the good news is, if you have a patient registry, improving healthcare delivery and advancing research has never been more achievable.
Here are four technology essentials to consider when designing, building, and managing a patient registry that will get you moving closer to measuring and improving care.
Using Healthcare Analytics for Patient Registries
Running a successful patient registry, also called a clinical data registry or disease registry, is a significant undertaking that requires the right technology and the right approach. Today’s most valued and most effective registries use healthcare analytics that go beyond data hoarding and warehousing, and sets the stage to play a crucial role in advancing care and research.
Specifically, registry technology should cover four essentials:
- Collect various data using industry-leading technology and standards.
- Organize disparate data into high-quality data.
- Transform the data into evidence using advanced analytics and data science.
- Enable various users to act on the evidence (registry data) using dashboards, reports, surveys, and other unique decision-support tools.
1. Acquire: Collecting Data for Patient Registries
Successful data acquisition creates a large data set. Two key aspects of this step include data sources and data integration technologies.
Registry Data Sources
Registries that achieve measurable results rely on a diverse and complete data set. They harmonize data from many sources, including:
- Medical Record Data: EHR, manual case report form (eCRF) entry, lab, pharmacy, imaging, clinical trials, and others
- Patient Data: Patient-reported outcomes, patient registries, social determinants of health, population health measures, wearables
- Payer and Regulatory Data: Claims, government data sets
- Registry Data: Other medical specialty, disease, and industry registries
Data Integration Technologies
In order to drive participation, registries must use efficient electronic data collection methods that leverage industry standards and minimize workflow burden.
To accomplish this, registry technology should support:
- Push/pull connection to EHRs and other clinical data systems
- Seamless connection to administrative databases, including payer and regulatory data sets
- Smart web-based case report forms (eCRF) for collection of specialized data elements
- User-centric surveys and tools for collecting patient- and family-reported data
Importantly, successful registries should base their data acquisition strategy on their goals and purpose – not just the data most readily or easily available to them. Focusing on what you need rather than on what you can get will point your registry at a purpose that will yield long-term success.
2. Organize: Preparing Registry Data for Analytics
Once data has been collected, it needs to be organized, validated, quality-checked, and cleaned. The goal is to ensure data are as accurate and complete as possible before analytic transformation. For example, our automated data validation step includes flagging duplicate and incomplete records, and incorrect information (such as a patient born in the 1800s or who is 10 feet tall), and scrubbing the data or notifying the source of the error to be corrected. This ensures your data assets are not solely valued for “quantity” but are of the highest quality.
3. Assemble: Analyzing Healthcare Data in Patient Registries
Transforming your raw data assets into high-quality, research-grade information requires more than data cleansing and validation alone. Applying advanced analytics ensures data and reports are credible and trusted, and can be used for research publication, quality improvement, regulatory reporting, post-market surveillance, and more.
Registry Analytics Checklist
How do you use analytics to ensure measurement is fair, trusted, and engaging? Here’s a quick checklist:
- Ensure measures and reports are clinically meaningful to both your physician or provider community and your patient population – if it doesn’t matter, why measure?
- Use both standard and tailored benchmarks that draw from industry and specialty data sets to ensure you’re comparing apples to apples – this is key to building engagement and trust!
- Provide timely feedback and actionable insights down to the patient level – meaningful change happens through action.
- Enable data-driven decision support through future forecasting and predictive analytics – great technology should enable better decisions.
Specific methodological and statistical tools we use include:
- Risk Adjustment: We use scientifically and clinically validated statistical risk models to evaluate – in real-time -- all factors related to each outcome.
- Reliability Adjustment: Our methods isolate “signal” and reduce “noise” based on Bayesian statistical techniques that were pioneered by our founders to determine whether outcomes are due to chance or true differences in quality.
- Benchmarking: We provide benchmarking based on patient characteristics, condition, geography, facility type, or other meaningful groups. We can also “blind” these benchmarks to protect privacy while still supporting effective measurement.
- Peer Group Definition: We provide reporting and peer benchmarking capabilities at the physician, practice, multi-practice, multi-facility, and society/organization levels.
4. Act: Leveraging Evidence in Patient Registries
While leveraging analytics and data science unleashes the value of your registry data, making data and reports accessible, engaging, and easily understood unlocks the value of your mission. We think of your registry participants and end-users as everyday people who have a wide exposure to a variety of digital experiences. When it comes to engaging with your registry, participants:
- Expect the same technology experience as their favorite apps or websites
- Share and/or use information when it is convenient and compelling
- Need their experience to be valuable
A Focus on User Experience
Our focus on user experience ensures that every persona can get value from the data, whether their needs are simple or complex. A few of the specific reporting features we use in our registry platform to drive engagement and support analysis include:
- Intuitive Views: Analyze data at the patient, provider, or site level, either individually or in aggregate
- Flexible Interaction: Explore data at a deep clinical level by creating custom patient cohorts, analyzing case-level details, and drawing correlations within and across diagnoses
- Personalized Visualizations: Perform complex analyses and create powerful visualizations using embedded Tableau
- Custom Queries: Extract raw or analyzed data for special research projects or reports
Other Interactive Experiences for Registries
Beyond reporting and data visualizations, registries can harness emerging tools and technologies to add utility and value to their programs.
Patient Engagement and Patient-Reported Outcomes
Patient data informs a more complete view of quality, smoothing the gaps between clinical visits documented in the EHR, and helps you achieve even greater results. Modern patient-reported outcomes surveys and engagement tools allow you to collect the right data from the right patient at the right time.
Clinical Decision Support
Bringing together clinical data and patient-reported outcomes creates a powerful asset. Outcomes calculators use predictive analytics to intelligently combine registry data to predict outcomes, risks, and results of procedures, therapies, and treatments. This enables physicians to make data-driven decisions and empowers patients to engage in informed conversations about their outcomes.
Merit-based Incentive Payment System (MIPS) Reporting
Supporting CMS quality reporting not only drives quality improvement but also extends business value to registries. Physicians and other providers can use registries to report under the CMS MIPS program across all reporting categories, via a Qualified Clinical Data Registry (QCDR) or Qualified Registry (QR). By selecting and reporting on meaningful, clinically-relevant measures, monitoring performance rates, and reviewing estimated MIPS scores, they will understand their expected reimbursements in these programs.
Putting it All Together
These four essential steps to a successful registry are complex but achievable. ArborMetrix has built strong partnerships with our clients that put acquiring, organizing, analyzing, and acting on data at the center of their registry strategy.
Our clinical registry platform, RegistryX, and our strategy and partnership, puts these goals in their grasp. We bring our proven strengths in delivering clinical data registries that lead to scientific findings and actionable insights that have a real impact on real people.