The case for sharing health data

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Picture: Ministry of Health chief technology and digital services officer Anne-Marie Cavanagh

Digital Vision: A regular column by Ann-Marie Cavanagh, Ministry of Health

It is important to strike the right balance between access to information and constraints on information sharing, especially if we are seriously considering the creation of a national health information platform. 

There is no doubt that data is a valuable currency in this modern, digital age. However, as we have seen recently with some social media organisations, the power of data can be misused unless the right controls and foresight are in place. But what about health information?

A person’s health information is some of the most valuable data that is held about them – it is made up of sensitive, private details about their health and wellbeing, treatment and care. At every point of contact with the healthcare system, health information is recorded about a person.

Historically there has been debate about who owns health information, who can access it and how it will be used.

The Privacy Commissioner has said that rather than thinking in terms of ownership, it is more accurate to say that a person has rights over health information about themselves and that health organisations have obligations over the health information they hold.

Health information has enormous value as it allows a person to manage their own health and wellbeing, including supporting their interactions with the public health system.

It is also valuable to health professionals who need to use it to treat and care for their patients, to planners who make decisions about how best to allocate limited resources, and to researchers and policymakers who need to use large anonymised datasets to analyse in making medical discoveries and decisions.

Security and confidentiality of health information is of paramount importance – we want to constantly improve health outcomes for patients while protecting their privacy. We must maintain public trust and confidence and be transparent about the sharing of personal health information in the health sector, how it is protected and what it is used for.

The current situation

Each time a person encounters the New Zealand public health system, information is generated about their visit or treatment with a healthcare provider. That information is stored and registered against their NHI number – their health identity.

Health information about people is already shared within the sector to enable and improve the treatment and care they receive – but sharing is currently limited, and often occurs only when a provider decides to share it.

Most information is held in the systems used by the healthcare providers the individual has visited, which means each healthcare provider – such as a GP or a hospital – can’t always access information that the other holds about a person.

Currently, the extent to which organisations are digitised is highly variable, digital services often exist as silos and information does not adequately support clinical workflows across services and organisations. Quality of care can be compromised when patients transfer across healthcare organisations and their information does not travel with them.

This approach is centred on the provider, not on the patient. We want these systems to be joined up to enable better care and treatment, with the person at the centre. There is a real risk of harm to patients when information is not connected, and we want to ensure people understand the benefits of having their information shared between healthcare professionals.

The solution

Going forward, we want to ensure a person-centred focus for the health service in New Zealand, which is at the centre of our Digital Health Strategy.

Sharing and communicating information is fundamental to a digitally connected healthcare system, and allows for better health outcomes through availability and analysis of data.

Developments in emerging technologies and advances in innovation offer new ways to join up sources of data to add value by informing the way individuals are treated across healthcare systems.

The Ministry of Health already supports information sharing in appropriate ways, times and with appropriate access and security controls. The Health Information Governance Guidelines set out how health providers, working in partnership with consumers, can share information legitimately in the performance of their duties without infringing a person’s right to privacy.

It is important to strike the right balance between easy access to information and constraints on information sharing.

Taking an approach that is too conservative in the sharing of information can lead to undesirable outcomes for patients and ongoing inefficiencies in the health system. Conversely, making information too easily accessible risks privacy breaches and a loss of consumer and provider trust.

Getting this balance right is critical to being able to move forward, especially if we are seriously considering the creation of a national health information platform. We need to clearly understand the public’s view and establish the appropriate strategy for managing access to health information.

Fundamentally, a person should be able to access information about themselves, seek correction of information that is inaccurate or misleading, be informed about who has accessed their information and for what purpose and have some control over who is able to access it.

Equally importantly, health providers must be able to access and use health information that would ultimately improve patient care and be able to share it with others appropriately.

Having a record of a person’s health information easily accessible to them and their health providers will make people more engaged and aware, empower them to be active participants in their own wellbeing and lead to healthier New Zealanders.

We need to be open and transparent to ensure public trust and confidence in the way health information is shared and used across the sector. We want a dual focus on protecting sensitive health information while maximising the usefulness of data to enable improved individual and population health outcomes.

Read more about the Vision for Health Technology theme ‘Accessible, trusted information’

Anne-Marie Cavanagh is the Ministry of Health’s chief technology and digital services officer

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