NSW Health is developing a Data and Analytics Strategy to make sure that there is one clear vision and direction for data and analytics across NSW Health.
The Council was asked for their advice on:
The Council deliberated on this issue in July 2025.
NSW Health collects and uses many different types of data to help improve individual care, understand and track diseases, plan health services, make sure care is safe and high quality, better diagnose, improve equity and access, and so much more.
The NSW Health Data and Analytics Strategy is being developed with input from people all across NSW Health. The aim is to make sure that the right information is available to the right people, at the right time to generate knowledge, support informed decision making, improve patient care, and drive better health outcomes across NSW.
Being transparent means people being clear on what data is collected about them, how, where, when and why it is used, how it is stored, kept safe and disposed when no longer required. People should be able to easily source the information that is important and helpful when it is needed.
This matters so people can have faith in the system and equitable access.
Transparency fosters trust, encourages people to seek care and share their experiences, and supports ethical, legal and human rights obligations. It can also drive organisational learning, improve health equity and enhance accountability.
The Council believes to responsibly share information with consumers, carers and the community, NSW Health should make sure that what data is shared is accessible, accurate, up-to-date and useful to many people across the state. Transparency in the responsible sharing of data and information is essential to building inclusiveness, empowerment and community trust.
Responsible data sharing should be co-produced and embedded via long-term meaningful engagement with communities, priority populations and under-represented groups.
Community trust and awareness can be strengthened by accurately showing people how their data is used in practice, what isn’t needed, and how they can control access. Transparency also means acknowledging and addressing the risks of data sharing, including data breaches, and NSW Health must clearly communicate how risks are managed.
Information and data should be useful, relevant and easy to understand. It must be free of jargon and available in multiple formats such as Easy Read, and as translated materials.
This can be achieved by ensuring a single, user-friendly portal/ web interface, or similar, to serve as a clear entry point to available health system data and tools, with intuitive navigation and accessibility features. Data should be updated at intervals appropriate to each dataset, ensuring relevance and timeliness.
This should be integrated alongside everyday planning and service delivery processes. A broad representation of community voices must be actively reflected in the data and part of decision making to decide what should be collected. NSW Health should always show how they engaged, what was heard, and what changed because of community input and use this to continuously improve. Keep the conversation going and ask communities what they want and need.
Consumers and carers should be included from the beginning and at all stages of decision-making at the highest level of participation possible. Practice should align with the Six Core Ingredients of All of Us.
Engagement should include multiple methods, opportunities and choices to reach diverse communities through regular panels, community events, and safe spaces for sharing stories and lived experiences. It should be offered in multiple formats, so people have choices, such as surveys, social media, and face-to-face conversations.
Feedback tools must be inclusive, simple, and accessible, and communities should be informed about what happened with their input and feedback. NSW Health should use digital tools to collect and respond to feedback, e.g., surveys, QR codes, and questionnaires in outpatient waiting rooms. Volunteers could be deployed for face-to-face engagement alongside digital methods to ensure broad participation.
Recommendations from the Council have been provided to the Enterprise Data Governance Enablement (EDGE) for consideration as the Data and Analytics Strategy is finalised.
If you would like to find out more about the Data and Analytics Strategy, please contact the Enterprise Data Governance Enablement.
It is accountable for the delivery of the program and is focused on ensuring patients and people are at the heart of all decisions while also achieving efficiency and maximum value from the resources available.
The SDPRIA asked the Council for their advice on:
MyChart is the consumer portal that allows consumers to interact with their health system and become more engaged in their care. In MyChart, consumers will be able to view appointments, see results and medication lists, receive discharge summaries, receive notifications and reminders about their health care. e.g immunisations.
NSW Health collects Patient Reported Outcome Measures (PROMs) and Patient Reported Experience Measures (PREMs), alongside general feedback in many ways, such as surveys, social media, incident management and complaints, and local governance committees and partnerships.
Patient Reported Outcome Measures (PROMs) are collected and used at the point of care to provide clinicians information about what matters most to patients, and to enable shared decision making. They are also used to drive improvements across the health system.
Language and equity matter to us. People are more likely to share their health experiences and outcomes openly when they feel seen, heard, respected and safe. Inclusive and respectful language choices create a personalised and supportive environment. Comprehensively enhancing decision making and treatment goals, and ensuring people feel like partners in their care begins with clear, respectful communication.
Quality, safe, compassionate and person-centred care matters to us. People deserve care based on what is happening to them right now. Up-to-date information supports safe, quality and compassionate care — and helps health services respond to what matters most. It ensures the streamlining of hospital services and minimises errors in care caused by information that is outdated, incomplete or inaccurate.
Supporting people to be empowered agents in their own health care is important to us. People have a right to choice and collaboration when identifying the ways in which they wish to engage. Improving health-related quality of life occurs when people feel in control, incorporating their own agency into decision-making and understanding.
Being fully informed matters. People should be fully informed and consent to the use of their data, and trust that their data will be handled sensitively and confidentially.
Everyone has different needs and offering flexibility ensures that everyone can participate. Flexibility matters. By providing flexibility – you enhance inclusivity and accessibility.
Partner with consumers, carers, family, kin and support people to get it right. It will ensure that PRM are user-friendly, meet various needs and preferences, and contribute to better outcomes and experiences for everyone.
Recommendations from the Council have been provided to the SDPRIA for consideration as the SDPR is rolled out across NSW Health.
Following the Council’s establishment in July 2024, the members worked in partnership across three (3) meetings to shape their Ways of Working. Aligned to best practice in lived experience engagement and All of Us: A guide to engaging consumers, carers and communities across NSW Health the Council has:
For more details or any enquiries, please contact the Council’s Support and Secretariat.