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- Improving the UK's health data capability & the industry's access to data
Improving the UK's health data capability & the industry's access to data
Harnessing the unique potential of UK health data, provides huge opportunities to improve outcomes for patients, reduce costs and enhance efficiency in the NHS, and discover, develop and deliver new treatments. To achieve this, patients, the NHS and the biopharmaceutical industry need to be able to use the increasing amount of digital health data being collected.
However, the full potential of health data cannot be realised until structures and processes enable straightforward, safe, and efficient accessibility. The pharmaceutical industry has decades of experience handling health research data generated in clinical trials securely and is well placed to support UK policymakers and the NHS creating frameworks which enable efficient, and legitimate health data access for research and care.
I'm Dr. Janet Valentine. I'm the Executive Director of Innovation and Research Policy at the ABPI.
The UK's NHS health data is considered to be a unique asset because the NHS is a universal free at point of care health provider and that means we have cradle-to-grave health records on the whole population.
The pharmaceutical industry needs to use health data right across the medicine's development pathway. It's important when a company is developing a new product that they understand the characteristics of the people who have that particular condition. They also need to use health data to find how many people in the UK might be eligible for a clinical trial to test that particular product.
There's enormous potential for NHS data to be used to benefit patients and how care is actually delivered. The situation at the moment is that data is in different parts of the NHS and it's not connected up. So, it's not accessible for research. To realise the benefits of NHS data, we need to have these systems connect to one another and we need to have collaboration across the NHS to allow this.
We need clear rules for how health data can be used to discover new medicines and diagnostics and to monitor the safety of medicines in the population. And we need government backing to make sure that we have a service that provides data that is safe and usable by the NHS and researchers. Protecting the confidentiality of patient data is paramount. We remove patient identifiable information such as their name, their address, their date of birth, and their NHS number. And then researchers are able to use this data without being able to identify who these individuals are.
Once a medicine is available in routine care, it's very important that we continue to monitor its safety to make sure that there are no unexpected side effects. This is why it's really important that researchers have access to whole population level anonymised data to make sure that we don't leave anyone out and that we're able to ensure that everyone benefits here in the UK and globally from the fantastic NHS data.
UK Health Data for medical research
Dr Janet Valentine, ABPI Executive Director, Innovation and Research Policy discusses why NHS data is crucial for research, developing innovative, safe, and effective medicines.
Industry Use of Health Data Case Study Library
Explore our case studies library to understand how the pharmaceutical industry uses anonymised NHS data in research to understand the cause and progression of disease, to develop new medicines and evaluate the best care pathways for patients with different conditions.
Unlocking NHS data for research - how to improve the regional Secure Data Environment network
This report outlines the essential requirements from the 11 regional SDEs
within the Data for R&D Programme, referred to throughout the report as ‘the regional SDE network’, to meet industry research needs.
Options appraisal to deliver a Health Data Research Service in England
The government is seeking to maximise the value of data to stimulate growth, productivity and population health through the creation of a National Data Library. As part of this policy development, and in response to recommendations in the recent Sudlow Review of the UK’s health data, the government has signalled an openness to establishing a Health Data Research Service. There is a brief window of opportunity to shape a Health Data Research Service to ensure it delivers a truly internationally competitive service that meets the needs of all stakeholders.
To assist the government in adopting an approach that will demonstrate immediate value with the capability to grow over time, the ABPI and Health Data Research UK (HDR UK) have:
- distilled the critical national datasets that should form the starting point of a service
- defined the essential criteria for an internationally competitive and sustainable service, which can be used to benchmark service options
- appraised seven different service model options, outlining pros and cons of each model, highlighting where existing models already deliver to international standards and models that pose substantial inherent challenges.
We hope that these new insights, based on expert experience and feedback, will support the government in their decision-making process. With this in mind, we make four recommendations for next steps.
These include appointing the Strategic Advisory Group for the Data for R&D Programme to develop a shared vision and realistic implementation plan and engaging with the public, patients and GPs to hear their views on the proposed service model.
Principles for analysis and use of health data by ABPI members
This document sets out principles that ABPI members will adhere to when analysing and using NHS health data. These will complement the governance processes established by the data custodians.
Models of access to health data in the UK
This report describes the range of current models for UK health data access for pharmaceutical company researchers, with details on major datasets and case studies.
Unlocking the promise of UK health data
This report highlights a where action must be taken to address the key challenges and barriers which limit our potential to harness health data.
Introduction to health data
Over the last thirty years or so, advances in digital technology have enabled exponential growth in the amount of data we can collect, store, manage, analyse and share.
Health data and new medicines
Health data is playing an increasingly important role in the discovery and development of new medicines. Around 40 new medicines are approved for use each year, helping people extend and improve their daily lives.
Building trust in health data use
Health data is collected from patients and members of the public, and – in order for it to be used to support the development of new treatments – patients and members of the public must have trust and confidence that their personal information will be used only in the way that they choose, it is securely protected when it is used, and that its use will be carefully governed.
Harnessing the opportunities
The biopharmaceutical industry engages in a variety of ways with UK health data.
Enhancing the UK health data environment
The UK health data environment offers much promise to both UK-based and global researchers.
NHS Health Data Use Case Study Library
Explore how the use of health data in research is unlocking better care for patients, supporting NHS efficiency, and driving scientific innovation.
