Who owns Olivia’s health data? 3 things to consider

By Shmuley Goldberg - September 5, 2017

Seven-year-old Olivia had a severe asthmatic attack during school playtime. Olivia was rushed to the emergency department where medical staff welcomed Olivia and initiated medical care. While obtaining Olivia’s medical history, the nurse learned that Olivia has an extensive medical history and is on a daily medicine regimen.

This occurred during normal trading hours, her mum was present and it was not the first time Olivia spent time here at the hospital. However, the nurse struggled to obtain an accurate medical history from Olivia’s family, school, primary care provider or even that very hospital. As a result, necessary patient care was delayed.

In the age of wearables, EMR’s, smart medical devices and home monitors, there is a proliferation of health data generated by providers, patients and machines. In fact, only a small percentage of health data in the future will be generated within the health facility. However, more information does not instinctively translate to the right person having access to the right information at the right time.

The complex question of ‘who owns the data’ has long been debated from a philosophical, commercial, ethical, political and regulatory perspective. Yet the question to be asking is ‘who uses the data’? Health data is valuable to patients, providers, public health, pharmaceuticals and researchers and also to cyber criminals. We need to be addressing who should have access to the data and who is responsible for the privacy and integrity of the data.

3 things to consider:

1. Data custodian vs. data owner

As the topic is debated one thing is certain; health organisations must view themselves as data custodians. Rather than it being a question of technical control of data assets, it is one of accountability, security, entrustment and enablement.

2. Value and risk of health data

Unusable health data is not valuable. If health data sits in an expensive yet non-interoperable IT application, or if we adopt inflexible data policies, the data will not support better patient care outcomes, clinical pathways, improved patient experience, organisational capability or diagnostic and treatment breakthroughs.

Understanding how transformative health data can be, let’s revisit the incumbent risks. Patient information and care can equally be compromised in the absence of the correct risk approach, whether these risks be from data breaches, existing yet siloed and inaccessible data, inappropriate usage and sharing of data, or poor data quality.

3. Information governance in your organisation

American Health Information Management Association (AHIMA) defines information governance as “an organization-wide framework for managing information throughout its lifecycle, and for supporting the organization’s strategy, operations, regulatory, legal, risk, and environmental requirements”.

Information governance is critical to patient-centred care. An appropriate information governance plan should be a top priority for your organisation. AHIMA recommends beginning with an information governance gap analysis, placing an emphasis on patient safety, privacy and compliance. AHIMA also recommends that an information governance plan should enlist organisational leaders and key stakeholders, include guiding principles, clearly defined goals, measurable benchmarks and a clearly communicated action plan.

By embedding the right approach to ‘who uses the data’ into your organisation’s DNA, you’ll ensure that Olivia gets the care and patient experience that she deserves. 

Read: Australia’s first 24-hour video consultation and prescription service

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