Open Health Data: we need to unleash the power

Dr. Davida de la Harpe and Niall O’Neil argue that to deliver change and innovation we need greater transparency, which will allow the identification of opportunities for improvement, and will ensure accountability in service delivery.

The healthcare system in Ireland is under pressure.  As spending on health plummets, demand for services grows, with increasing chronic diseases and an aging population. There is no doubting the commitment and passion of healthcare workers, but change and innovation are required to deliver better healthcare for less. How can we deliver this change? We need greater transparency, which will allow the identification of opportunities for improvement, and will ensure accountability in service delivery.

Dr. Davida de la Harpe
Dr. Davida de la Harpe

Greater transparency can be achieved by publishing data about the performance of the healthcare system and about how healthy we are as a population: drugs prescribed by GPs, hospital costs for common procedures, which surgeons have the best outcomes. Publishing this data in a structured way that allows processing by computers is known as “open data.” Open data has been described as a “secret sauce for world class patient services” and “rocket fuel for innovation.” Organisations, individuals and entrepreneurs can analyse this data and seed innovation with potential to improve quality of care, drive patient advocacy and reduce costs.

Niall O’Neill
Niall O’Neill

Each time a patient has an interaction with the health system, information is gathered. This information is increasingly gathered and stored as electronic data. There are a number of organisations, institutions, and individuals that hold elements of this data including the HSE, the Department of Health, HIQA, hospitals and healthcare professionals.  As well as information directly related to healthcare provision there is also data available about our population health such as smoking rates, housing details, obesity rates and details of local infrastructure. These rich sources of data are made available to varying levels, some published in summary format, others published in reports. However, few are made available in a structured format that enables computer analysis.

Open data has been described as a “secret sauce for world class patient services” and “rocket fuel for innovation.”

In a perfect world the data held by these different bodies would be reliable, accurate and timely, and used fairly and transparently for best outcomes for all. Access to data would be made available and accessible in a structured format to any interested party, whilst absolutely protecting the privacy of individuals. There are, however, significant challenges in moving towards this goal.

Healthcare providers and practitioners are concerned that data will reflect poorly on their service if misinterpreted or interpreted out of context.

Healthcare providers and practitioners are concerned that data will reflect poorly on their service if misinterpreted or interpreted out of context. Simply comparing mortality rates across surgeons may suggest one surgeon has a higher mortality rate than another unless complexity of cases is taken into account. Putting the data in context is key. There may be a perception that healthcare data is too complicated for non-medical people to understand, but by making data open, services can be developed to present data accessibly. The UK site drfosterhealth.co.uk shows how hospital quality data can be made consumer-friendly through simple visualisation. Such analyses facilitate benchmarking and quality improvements.

Critically, public trust must be won. There is no data more personal than healthcare data and the personal right to privacy must be rigorously protected. This must be the foundation upon which any open health data initiative is built. Health data must be effectively anonymised to ensure that individuals cannot be identified. For instance, publishing aggregate GP prescription data would require practices and rarely prescribed medications to be grouped in a way which ensures that individual patients – and their conditions – cannot be identified.

Simply comparing mortality rates across surgeons may suggest one surgeon has a higher mortality rate than another unless complexity of cases is taken into account

Other countries have demonstrated that these challenges can be overcome and that open health data can deliver increased transparency, better outcomes and innovative solutions while ensuring that personal data is protected. In the England, survival rates are published for every cardiac surgeon, and it is now one of the safest places in Europe for heart surgery. In the US, costs for the 100 most common inpatient and 30 most common outpatient services are published for individual providers. In Ireland, the Minister for Health has made the positive step of announcing that hospital mortality data will be made publicly available.

Opening health data is not cost-free.  At a time when frontline services are under threat, this may seem unpalatable.  Yet the fact that cutbacks increase patient risk makes transparency more important than ever. A focus on pragmatic steps towards greater openness will allow benefits to be realised without significant cost. Existing capability such as HIQA and the Health Intelligence Unit within the HSE could be used to manage data quality, governance and publication. Data currently published by the HSE in PDF format, such as the HealthStat metrics, could also be published as structured data.

Transforming healthcare requires a collaborative approach, with patients, clinicians, nurses, managers, technologists, data analysts and business experts working together, integrating differing perspectives around common problems. Open health data is not a magic solution, but all change starts with analysing data. Open health data will allow others – organisations, citizen journalists and entrepreneurs – to complement the existing analytical resources of the public sector. Now, more than ever, we need as many minds as possible analysing data to help deliver change, and to ensure that patients get the best possible care.

Davida De La Harpe is an independent healthcare management consultant with  healthcare risk management, and quality improvement at the clinical/IT interface among her areas of interest. She previously  developed and led  the Health Intelligence   function in the HSE.

Niall O’Neill is a Senior Manager with Deloitte Consulting’s Technology practice, and an open data advocate.