The need for data beyond primary diagnosis

To the Editor: A recent editorial in the Journal1 is another in a long line of articles arguing that national linkage of routine care-delivery data will enable us to improve the health care provided to Australian patients.2 However, over the past three decades, progress on national data linkage has been painfully slow. Anyone who has ventured down the path of obtaining national linked data can attest to the fact that it is a frustrating and capricious process.

The problem is that progress has been left in the hands of data custodians (middle-ranking bureaucrats), whose job it is to maintain the status quo by continuing to collect and disseminate data (eg, via annual reports) the same way as has been done for the past 30 years.3 This lack of progress has been entirely predictable.

It is difficult for bureaucracies to adopt innovation, except when the particular innovation is a priority for senior executives.3 Although data linkage is a dry topic, we need to make directors-general and ministers aware that it is a key component of improving the health care delivered to Australian patients.

Because of the way their jobs are structured, data custodians are concerned about the remote risk of a privacy breach, although history shows that this risk is extremely small.4 They are also concerned about the legislation under which the data are collected, although all such legislation allows for release of data to competent researchers for bona-fide research.5 Finally, they are concerned that analyses will embarrass the government of the day, but history shows that it is the single anecdotal report of a mishap that embarrasses health ministers, not aggregate analyses of routine data where the aim is to improve delivery of services.4

The solution is not more layers of bureaucracy so that data custodians can mitigate risks that are already vanishingly small. In other sectors of the economy, industry leaders have been convinced that big data are a key factor in delivery of services, along with capital and labour. We need to do the same in health care.