I’ve written numerous times over the past few years about the power of medical data, and the numerous issues surrounding it, whether in the new ways of collecting and analyzing it, to the importance of strong data governance.
Despite the tremendous potential for delivering better care, and also better medical research, the joined-up use of medical data remains largely overlooked. A recent paper examines some of the reasons why that is.
The study found considerable variance in the IT systems across the NHS, with a continued reliance upon paper records and limited data sharing between departments. With patient medical records remaining the primary source of data around the patient, this undermines efforts to use such records both for better care and better research.
The poor use of data wasn’t confined to the NHS however, with the study also finding that both the pharma industry and universities were not using data to its full. For instance, the pharma industry have a long and murky history over the selective publishing of data around trials, and even academia has been accused of similar practices in recent years.
Various well publicised cases have led to steps to improve matters. For instance, projects such as the AllTrials campaign strive to promote the proper reporting of clinical trials. Even then however, it’s estimated that fewer than 50% of trials are reported within two years of completion.
Better governance
The analysis also revealed there were significant problems around the way data is regulated and governed. Existing regulations exist to ensure patients, the public and medical professionals are safeguarded, but this can often result in excessive caution being used around patient data. Consent procedures can also limit the impact of studies, especially in niche fields.
“Sometimes relying on the need for individual consent can limit studies about groups that are difficult to reach, as well as problems such as substance misuse, and any issues seen as sensitive,” the authors say.
All of which adds up to a significant problem. The authors say that the misuse (or non-use) of data is costing lives. Equally, none of the problems outlined above stand in isolation but rather as part of a wider picture of data governance in healthcare. Whilst there are clearly good reasons why data governance is crucial, there are also many areas that could be improved upon.
“It can been argued that data non-use is a greater risk to well-being than data misuse. The non-use of data is a global problem and one that can be difficult to quantify. As individuals, we have a role to play in supporting the safe use of data and taking part where we are able,” the authors conclude.
