Challenges of developing a cervical screening information system: the Ontario pilot project.

ABSTRACT

OBJECTIVE: To create a cervical screening information and reporting system in 2 geographic areas of Ontario. DESIGN: A pilot project involving access to, and linkage of, cervical screening-related cytology, colposcopy and histopathology records for women in the study areas, followed by development and production of woman-specific and aggregate reports. SETTING: Hospital cytology and pathology departments, colposcopy clinics, private cytology laboratories, and the provincial cancer agency (Cancer Care Ontario, formerly the Ontario Cancer Treatment and Research Foundation). MAIN OUTCOME MEASURES: Access to required records; data quality (i.e., standardization, completeness, accuracy); quality of record linkage; utility of reports to evaluators, data sources and physicians. RESULTS: The pilot project was not completed because of a number of major challenges, including multiple data sources requiring separate investigation and negotiations for access; variations in reporting terminology and coding; incompatibility or lack of computer systems; incompleteness of identifiers for record linkage; variation in legislation permitting data access and sharing and in its interpretation; and major financial, resource and time requirements. CONCLUSIONS: Although sufficient will and resources can overcome technical obstacles, changes in legislation will be required to overcome other challenges. Strong links with all sectors involved in cervical screening and attention to changes in the health care system are essential.