Developing a regional transmural care database: A roadmap

In primary care health care systems, primary care physicians (PCPs) provide most basic care services, and if necessary, refer to secondary care for specialized work-up and treatment. If hospital care is required, agreement between PCPs and secondary care physicians (SCPs) on the conditions for patient referral and back-referral are considered crucial to providing high quality patient care. The regional healthcare network of Utrecht, a region in the Netherlands, developed a set of collaborative patient care agreements (CPCAs) for specific chronic conditions. Even though these CPCA are endorsed by all relevant regional health care organisations, the adoption of these agreements in practice remains substandard. In this project, through linkage of routine care data, as registered in daily practice by PCPs and SCPs, a regional transmural care database (RTD) was developed for monitoring the use of the CPCAs. Its data was transformed into' mirror data' used to support PCPs and SCPs in discussing and improving current practice and to support a learning healthcare system within the region.

The development of the RTD is part of a larger action research project on joint care, called ZOUT (an acronym which is translated as "The right care at the right place in the Utrecht region"). The RTD includes data from three regional hospitals, and about 70 affiliated primary care practices which are united in the Julius General Practitioners Network (JGPN). These data were extracted, linked and presented in the form of mirror data, following simple methods to allow replication of our approach. CPCAs addressing transmural care for three chronic conditions were selected. Data from the primary care practices and the hospitals were linked by an independent trusted third party. This enabled relevant hospital data to be added to the primary care dataset, thereby providing transmural routine care data for individual patients.

During the development of the RTD, a roadmap was created including a detailed step-by-step checklist of the organizational, administrative, technical and legal arrangements which needed to be made. Legal and administrative challenges proved most challenging. Also, incompleteness of data and the impossibility to translate several agreements into extractable data limited the potential for providing a comprehensive overview of the extent to which agreements in the CPCA were adhered to in daily care.

We present a systematic, comprehensive (technical as well as practical) and reproducible roadmap to developing a regional transmural care database suitable for generating mirror data on joint transmural care between PCPs and SCPs. This approach includes all technical steps in data selection and linkage, as well as the substantive steps that need to be taken in the analysis and application of the results. The mirror data, which reflects the follow-up of agreements formulated in the CPCAs, enabled shared reflection and discussion between PCPs and SCPs. This supports the search for bottlenecks and potentialities for improving daily collaborative care, thereby showing great potential to serve a learning regional healthcare system.