SEER Case Consolidation Study: Design & Objective NAACCR 2009 Annual Conference San Diego, CA May 18, 2009 Lois A. Dickie, CTR Public Health Analyst NCI SEER

Case Consolidation in a Nutshell Merging multiple documents Best information Process of merging multiple cancer abstracts or documentation pertaining to the same case into a single “consolidated” record that best describes the patient’s diagnosis, stage, and treatment.

Current Consolidation Status Concept is consistent across SEER Processes differ Variations in registry software What we do know is that all central registries perform case consolidation and that while their idea or concept of consolidation is similar, they differ in processes and data management systems. They are consistent in that they are ALL striving for an accurate and consistent single record that presents the patient’s whole cancer experience.

Why Case Consolidation? More documents Evolution of medicine & patient care Technology Educated patients Registries requesting guidelines NAACCR Consolidation of Demographic Data Items *The practice of medicine and health care has changed over the years and a patients cancer care has taken on a multi-disciplined approach. The end results are multiple abstracts and documents from multiple sources that need to be reduced into one cohesive record. *There are more specialized tests- for example JAK 2 that are becoming common place and these specialized tests are performed at specialized labs. *Patients have become more proactive in their health care thanks to the internet, family, advertisements, patient advocacy groups Registries have asked for guidelines NAACCR is working on consolidation of demographics and we will communicate our findings with the Consolidation work group.

The Study Objective Probability of developing business rules & guidelines. Dictionary of Standard Terms Establish if it is possible to develop standardized business rules & guidelines that will result in improved and more consistent data throughout all of the SEER registries Dictionary- Terms for registry processes, not just consolidation, differ from registry to registry. Establishing a dictionary of standard terms is a step toward building the foundation of rules and guidelines.

Study Design Challenges Evaluate 17 registries multiple data management systems individual processes How to evaluate information Now that we’ve decided to tackle case consolidation practices, we needed to look at what we wanted to learn from the study and how to go about acquiring the information we needed.

The Design Overview Evaluate consolidation processes & business rules by Questionnaire Case scenarios Questionnaire designed to ascertain specific information: Editors consolidate case scenarios & provide rationale for their results

Overview cont’d Web-based software tool Data analysis Recommendations *We are developing a web-based software tool specifically for this study. *The software will include an audit log. This audit log will allows to track the participants actions as they work thru the cases. The editors will be able to choose from a drop down box and select the reason for the change they have made for that particular data item: example known over unknown, better information, reporting source, etc. * And finally, recommendations will be made on whether guidelines can be developed.

The Methodology Phase 1- Data Collection Editing staff will consolidate & provide rationales for changes Six sites “Editing staff” = anyone who performs editing of cancer records, quality control on cancer records, consolidation of records. These sites were selected because they are not usually a “one stop shop” in diagnosis and treatment. * each scenario will have a minimum of 2 documents Breast, lung, colon/rectum, melanoma, prostate, and hematopoietic Each scenario will include the initial cancer record and at least 2 subsequent documents

Phase 1- Data Collection Data fields are Site/laterality Histology/behavior/grade CS codes Treatment & date started NAACCR is looking at consolidating patient demographics, so our focus will be on the tumor information. The participants will not have to match the incoming documents to either the patient or tumor. The participants will be instructed to consolidate the record as they routinely do in their own registry.

Phase 2- Process Assessment Questionnaire Editing manager Process Data sources Format *The questionnaire will be completed after the data collection exercise is complete. This will be completed by the editing manager or supervisor. It is designed to ascertain specific information: for example matching algorithms, automated versus manual review, what document sources they consolidate and what format they receive them- paper or electronic, training, are there documented procedures in place and do all the editing staff adhere to these processes?

Phase 3- Data Analysis Questionnaire Study results Responses to questionnaire, scenario results and rationale will be analyzed and used to identify both commonalities and discrepancies between each registry

Phase 3- Results & Recommendations Guidelines Business rules Dictionary of standard terminology If the conclusion of the study demonstrate that there are enough inconsistencies among the registries, recommendations will be made for developing guidelines for use by the registries Dictionary of standard terminology

When? 2010 Will work with our registries to establish when in 2010 the study will be done: CS Hemato MPH rules Education for these updates

Questions? dickielo@mail.nih.gov

Case Consolidation Math 1+1+1+1+1=1