By Nadine Andrew
From birth until death information about us is collected by different agencies and government departments. Data linkage is the method of bringing together information about people from different sources. This is particularly useful in stroke research because people with stroke have many contacts with different sectors of the health system before, during and after their stroke. Data linkage therefore, enables us to obtain a comprehensive view of the patient care journey and identify ways of improving the health system.
The Public Health Stroke Research groups at The Florey and Monash University, under the direction of A/Prof Dominique Cadilhac, have been leading the way in linking hospital and death data with clinical registry data in stroke, across Australia. This proved to be a lot more difficult than anticipated. Multiple data custodian and ethics approvals and the development of new and better ways to link data to ensure that peoples’ privacy was maintained at all times were required. The issues in achieving this cross-jurisdictional linkage project have been described in our recent publication: Andrew NE et al., Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health data, Aust N Z J Public Health, 2016:40: 436-42).
However, it was worth the effort as we now have comprehensive information on pre- and post-stroke hospital contacts and long-term survival. We have used these data, so far, to show that people who receive recommended care, such as being admitted to a stroke unit, are more likely to be alive one year after their stroke and have identified factors that may reduce hospital readmissions. We hope to continue our work in this area by obtaining future linkages with data sets such as Medicare and the Australian Rehabilitation Outcomes Registry (AROC) so that we can answer questions about the types of care that survivors of stroke are receiving in rehabilitation and community settings.