Data Saves Lives

What is the "Data Saves Lives" Strategy?

A UK government strategy showing how stakeholders can use data to bring benefits to all parts of health and social care – from patients and care users to staff on the frontline and pioneers driving the most cutting-edge research.

This plan further aims to bolster the £200M already invested in data for research and developments programmes. Enabling for the effective utilisation of health data to improve the UK’ s healthcare system as a whole.

What are the key commitments?

Investing in secure data environments to power life-saving research and treatments

Using technology to allow staff to spend more quality time with patients

Giving people better access to their own data through shared care records and the NHS App

How does this focus aim to improve healthcare?

Health and care:

This plan aims to improve people’s trust in the health and care system’s use of data through giving healthcare professionals the information they need to provide the best possible care. There is also interest in creating a collaborative data-driven approach to innovation that will improve healthcare and develop technical infrastructure.

Social care:

Focus will be placed on improving social care data to enable equitable access to information for people in social care settings, allowing for a more personalised treatment whilst taking the pressure off of families to tell their stories multiple times.

National decision-making:

National decision-makers will be supported through improved access to data, supporting the planning of national programmes, whilst improving the management of population health and proactive care.

Research:

Researchers will have access to data to develop life-changing treatments, diagnostics, models of care and insights.

What does this mean for people living with Inherited Metabolic Disorders (IMDs)?

This plan aims to create a more co-ordinated care system, breaking down barriers to the dissemination of crucial health information, potentially proving invaluable across all aspects of care, research, and decision-making.

Why is this important for me?

Individuals living with Inherited Metabolic Disorders are extremely engaged with health and social care, often accessing a multitude of different services and specialities within care.

Through health and social care services adopting the plan set out in this paper, people affected by IMDs will:

Have a greater understanding of how their data is used.

Benefit from reduced barriers to accessing health data.

Have more direct contact with health care personnel.

Be able to access their own health data, breaking down barriers to their condition and allowing them to take ownership.

Have a more tailored social-care experience.

Have better access to care based on individual needs (e.g., more at risk from lower economic background affected by disparities in care).

Benefit from better research and interventions including medicines, care and technologies including artificial intelligence