Highlights from AHRQ’s “Registries for Evaluating Patient Outcomes: A User’s Guide”

1. Adam Baus, MA, MPH West Virginia University Department of Community Medicine Office of Health Services Research 02/25/2009 Highlights from AHRQ’s “Registries for Evaluating Patient Outcomes: A User’s Guide”

2. Special Thanks to Our Funders This presentation was supported by Grant/Cooperative Agreement Numbers U32/CCU322734 and U59/CCU324180-04, and 1U50DP000675-01 from the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.

3. Agenda • What’s our reference point? • What’s a registry? • What’s our goal? • How do we go about this? • Registry planning • Registry design • Registry buy-in • Data collection and quality assurance

4. The Care Model – Our reference point Presentation from Ed Wagner on the Care Model available at: http://www.improvingchroniccare.org/ index.php?p=The_Model_Talk&s=27

5. “Registries for Evaluating Patient Outcomes: A User’s Guide” Handbook for creating, operating and evaluating registries In simple terms: What are best registry practices? Citation: Gliklich RE, Dreyer NA, eds. Registries for Evaluating Patient Outcomes: A User’s Guide. (Prepared by Outcome DEcIDE Center [Outcome Sciences, Inc. dba Outcome] under Contract No. HHSA29020050035ITO1.) AHRQ Publication No. 07-EHC001-1. Rockville, MD: Agency for Healthcare Research and Quality. April 2007. Available at: http://effectivehealthcare.ahrq.gov/repFiles/PatOutcomes.pdf User’s Guide from AHRQ

6. 1974 – E.M. Brooke, in a 1974 publication of the World Health Organization, describes registries for health information as “a file of documents containing uniform information about individual persons, collected in a systematic and comprehensive way, in order to serve a predetermined purpose.” 2007 – AHRQ describes a patient registry as “an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes.” So tell me…What’s a registry?

7. Disease or Condition Registries Understanding what a registry is and why they’re useful is essential to success • Registries differ from EHRs / EMRs • STRENGTH in disease management / reporting CDEMS is a “Disease or Condition Registry” • This type of registry uses the presence of a particular disease or condition as the inclusion criterion • CDEMS is health profile-driven • Diagnoses prompt specific measures to be associated with a patient

8. The Goal: To measure quality of care and determine opportunities for improvement To describe disparities in access to care (care patterns) To assess effectiveness of care To change behavior through feedback on data To provide transparency through public reporting To impact policy & decision making In reality, registries are multi-purpose So tell me…What’s the goal of having a registry?

9. Some general observations: Electronic medical/health records receive ample attention regarding implementation Registries, on the other hand, don’t have the same level of research and documentation Registries should be designed, implemented and evaluated with respect to their intended purpose(s) Not a data capture-all “A registry is not a static enterprise” Need a willingness to make changes to the registry due to changing times So tell me…How do we go about this?

10. Key Questions: What’s the purpose of the registry? Who are the stakeholders? Those to whom the data matter (such as patients, providers, public health, payers) What’s the scope and target population? Scope of the registry includes size, setting, duration, geography Is it feasible? What data are required? How much time and effort does this need for success? Part 1: Registry Planning

11. Building a Registry Team The types of people that should be at the table: • Experts on the subject matter / disease states • Experts in registry science • Experts in data collection and management • Experts in quality assurance • Experts in project management • Integrating the registry into the office flow • Ongoing training (not mentioned here specifically, but should likely be there) • Change management

12. Each data element should be chosen for a reason The reason ties back to the registry’s purpose Don’t want to overburden registry users with data elements that really don’t need to be collected So, the core data set is a “need to know” set of variables, rather than a “nice to know” In the registry’s case report form, or CRF, we need 2 main elements: data dictionary (including data definitions) data validation parameters (recently built into CDEMS) Defining a Core Data Set

13. The outcomes of greatest importance should be identified early, with stakeholder involvement Helps to ensure the registry is designed to fit it’s intended purpose(s) Helps to ensure good choices in the selection of the core data set Defining Patient Outcomes

14. Focus on the major purpose(s) of the registry Keep it practical, and achievable Data elements: What data elements are absolutely necessary? Which are desirable but not essential? Where can the data be found? Are existing data available for import into your registry? AHRQ notes that EMR use is increasing, but that difficulties can arise in using EMR data due to import abilities, scanned docs rather than actual data values in a relational database, and terminology that doesn’t match across systems Part 2: Registry Design

15. Once data elements have been selected, a data map should be created. This identifies all sources of data and explains how the sources will be integrated. Useful for defending the validity and/or reliability of the registry data Integral part of the overall data management plan Registry Data Map

16. Cohort studies follow a group of people over time who possess a certain characteristic to see if they develop a particular disease or outcome A good fit to evaluate effectiveness of the registry measuring changes in quality of care Study Design – The Cohort Analysis

17. Recent Publication – Journal of Rural Health, Winter 2009 “Electronic Patient Registries Improve Diabetes Care and Clinical Outcomes in Rural Community Health Centers” (WVU OHSR) • Purpose: Examine effects of basic registry utilization on diabetes care processes and clinical outcomes according to level of registry use • Methods: Pre-Post registry analysis of cohort patients from 6 FQHCs (N = 661).Patients were included if they had 2 years of continuous care, including an office visit during the year prior to registry implementation (baseline) and during the year following implementation (follow-up). • Findings: Registry assisted in significant improvements in care practices (12 of 13) and clinical outcomes (HbA1c, LDL, Cholesterol) in patients seen at health centers with at least moderate levels of registry utilization Full-text available at: http://www3.interscience.wiley.com/cgi-bin/fulltext/121585395/PDFSTART

18. Buy-in effects the overall quality of the data and whether or not the data are used Provider buy-in receives much attention, but it’s more far-reaching than that Goals of registry use must be understood at the user-level What are the incentives? California Clinics Receive Funding to Enhance Chronic Disease Care, Using Electronic Registries From the California HealthCare Foundation. Available at:http://www.rwjf.org/qualityequality/digest.jsp?id=8002&c=EMC-ND142 Online Registry Improves Diabetes Care in Kansas From HealthCare IT News. Available at: http://www.nxtbook.com/nxtbooks/medtech/hitn0608/#/16 WV FQHC received federal funding for CDEMS use Part 3: Registry Buy-In

19. Quality data (and meeting your goals) depends on proper registry structure, data definitions, user training and problem solving Points to consider: Data collection Data cleaning Data storing Data monitoring / reviewing (Quality Assurance) Checking for errors in data interpretation / coding Checking for errors in data entry and transfer Part 4: Data Collection & Quality Assurance

20. Putting this information to use – An example Inactive clinic – Private provider in WV • Family-run practice • Staff referred to as family • Dedication to their patients • Welcoming to our office / Supportive of our efforts • ~5 year work history with this site. They used CVDEMS at the start; transitioned to CDEMS; eventually, found themselves unable to maintain registry and stopped using it • Told us that time is the barrier

21. Putting this information to use – An example Assess the situation: • What are the strengths we can use? • What are the barriers that need to be overcome?

22. Putting this information to use – An example

23. Questions?

24. Contact Information Cecil Pollard, Director (304) 293-1080 cpollard@hsc.wvu.edu Trisha Petitte, Assistant Director, Health Improvement Consultant (304) 293-1084 tpetitte@hsc.wvu.edu Mary Swim, Applications Programmer, Technical Support (304) 293-1079 mswim@hsc.wvu.edu Adam Baus, Program Coordinator, Sr., Technical Support (304) 293-1083 abaus@hsc.wvu.edu Nell Stuart, Health Improvement Consultant (304) 276-3785 nstuart@hsc.wvu.edu Marie Gravely, Health Improvement Consultant – Marshall University (304) 482-6016 gravely3@marshall.edu Office website: http://www.wvuohsr.org