Is New South Wales ready to harness the transformative power of data in health and medical research?

Event Report By Anna Janssen

This month Researcher Australia launched its inaugural speaker series event ‘Is New South Wales ready to harness the transformative power of data in health and medical research?’ to a full house of health professionals and researchers. The event featured panellists Dr Jean-Frédéric Levesque, Professor Emily Banks, Dr Avi Ratnanesan and consumer representative Harry Illes-Manne. The panel was led by ABC reporter Sophie Scott.

The panel started with a discussion on why health data was valuable. It was clear from the discussion that followed that the value of health data went beyond primary uses for which it was collected. Overwhelmingly, the panel was in agreeance that a focus should be placed on the importance of health data for the patient. Focusing on the patients’ needs was particularly important for deciding what questions should be asked of health data. One panellist commented: “We should be placing the consumer, and the consumer needs at the heart of our health data. Answering the questions that they really want to know.”

The discussion quickly pivoted into a common trope of the health data world: the challenge of collecting quality data. One of the biggest challenges for harnessing health data seemed to be acknowledging the fragmented nature of healthcare, and the corresponding fragmented nature of data collected about an individual’s interactions with the health system. Again, engaging with patients and carers was discussed as a means of overcoming this challenge. The panel reinforced the central role of the patient in healthcare,  “It is really important to reconsider our thinking and realise patients are often the only witness of their entire journey.”

Although the panel saw challenges to overcome in harnessing health data for research, there was also optimism and enthusiasm for the future. One panellist commented, “probably the next frontier is to capture what is happening in hospitals without people even noticing it.” It was exciting to hear discussion about a future where technology in healthcare could be as seamlessly integrated into the patient and health professional experience as devices like smartphones are in the general population.

The panel discussion closed by ruminating on the big question: is NSW ready to harness health data? There were mixed opinions as to NSW’s readiness to harness health data. Some panellists felt the state was in a good position to invest in the meaningful use of data. Others felt infrastructure challenges still need to be overcome, in particular, a workforce skills shortage. Although NSW was seen as having invested well in solutions to harness health data, the panel felt there was more to do in designing effective systems. Even more important was to continue to iterate and evolve on existing approaches, to capitalise on existing infrastructure investments that had already been made. As had been the running theme of the panel, a closing remark focused on the important role of patients and the general population in driving future uses for health data: “Ultimately, it’s about what the people of NSW want… it’s not about whether we are ready or not, we have to do this, and we have to get better at getting this data to consumers. .. We need to communicate in better ways and we can use data to understand how patients are using our health system.”