Conversations from the Emerging Tech in Health Symposium
As part of Techweek this year, New Zealand’s digital health community came together at the Emerging Tech in Health Symposium in Christchurch. Dame Diane Robertson, head of the Data Futures Partnership spoke about the need to keep emphasising the principle of patients owning their data.
It is important for all organisations to prioritise both data governance and data management. Governance is about responsibility and strategy, including knowing who owns the data your organisation looks after, what role data plays in your strategic goals, who can make decisions on where and how the data is used. According to Dame Diane, if we are to become a truly patient-centred health system, our data governance must reflect patient ownership and social license.
If you go and visit your GP and ask them how you can give consent to share your health data, they will likely tell you that it’s not your data, it’s their data. Similarly, before an operation, your anaesthetist will ask you, “is there anything I should know before I put you to sleep?” and they actually need your answer, because most of the time they don’t have access to your full medical record or history.
Because of the fragmentation in the health system, much of our health information does not flow freely and is stuck in silos. As we connect our systems to allow this information to be exchanged between providers, we must bring patients along on this journey, so they have control over their health data.
Also speaking at the Symposium was Dr Lloyd McCann, CEO Mercy Radiology and Clinics, Head of Digital Health, Healthcare Holdings. Dr McCann posed a scenario in how we might combine clinical decision making with data governance: What if the patient’s wishes contradict what the data is telling us?
He gave the example of a patient reported outcome measures (PROMs) tool that’s being used by NHS Wales, that was developed to inform data analysis based on the patient’s wishes. They implemented a PROMs tool using the Oxford hip and knee scores and utilised that data as a predictive tool to assess whether someone needed a follow up appointment after a hip or knee operation. The patients were assigned a baseline score before a hip or knee operation, and then they were surveyed one month after their operation to evaluate their functional improvement. 95% of these patients’ follow up appointments at 6 weeks post operation, were cancelled. By putting patients at the centre of their healthcare, NHS Wales were able to remove a significant amount of waste and duplication in the health system.
Dr McCann proposed there is a huge opportunity here, which involves a shift in mindset to “what do we know” rather than “what do we think”. Like others at the conference, he reflected on the move from an episodic model (where we interact with patients at times of poor health) to the wellbeing model (where we interact with the community, using care teams to keep people well).
We’re at the beginning of digital data journey where we are developing technologies that are enabling improvements in all areas of health. Patients must be at the centre of these technologies to ensure the highest benefits are realised.