Pharmaceutical companies commit to new principles on using NHS data for research

• Companies commit to highest levels of transparency when using NHS data to accelerate medical research
• New principles, developed in consultation with the NHS, medical research charities, patient groups and the public aim to build public trust in use of health data for research purposes
• Companies also commit to share and publish the findings which can be used to improve care across the health system

Pharmaceutical companies using NHS data to accelerate medical research today committed to following a new set of principles for use of NHS data which pledge the highest levels of transparency and sharing of insights to improve care across the health and care system.

The Association of the British Pharmaceutical Industry (ABPI), the trade association for over 120 biopharmaceutical companies supplying prescription medicines in the UK, has launched a new set of principles that members will follow when using NHS data for research purposes.

The new principles have been developed in consultation with the NHS and stress-tested through a consultation process with the general public, as well as direct engagement with stakeholders in research and citizens’ rights communities, including medical research charities. Their aim is to increase transparency and build public trust in the biopharmaceutical industry’s use of health data for research purposes.

The NHS grants secure access to data to pharmaceutical companies where there is a clear legal basis and an explicit aim to improve the health, welfare or care of patients in the NHS, or how the NHS operates in line with the Data Ethics Framework. Providing access in this way means millions of UK patients benefit from faster discovery, development and evaluation of new medicines thanks to industry researchers’ ability to analyse health and genomic data in a safe and secure way. For example, NHS data was used to measure the real-world safety and effectiveness of Covid-19 vaccines during the pandemic – saving thousands of lives by allowing targeted decision-making around dosage spacing and prioritisation of sections of the population based on their vulnerability. 

NHS data can also be used to help identify potential risk factors in patients, allowing doctors to intervene earlier in disease progression and before their condition deteriorates. For example, GP data has been used to develop an algorithm that measures a person’s chance of having a stroke based on whether they have an irregular or abnormally fast heartbeat, supporting more targeted prescribing and preventative action. 

The principles include an industry commitment to publish findings which could be used to improve care across the health system, for example tackling inequalities or helping to address the NHS backlog.

The principles are designed to build upon the existing regulations and safeguards which govern researchers’ access to secure and anonymised health data. It also complements the Government and NHS’s new “Data Saves Lives” Strategy, and DHSC’s own principles for the appropriate use of data.

The ABPI’s new Governance Principles for the Use of Health Data, to which all its members have committed, are:

1. We will be transparent about the purpose of our health data access
2. We will ensure that contractual arrangements to access health data will be clear and will return fair value to the system
3. We will actively promote Patient and Public Involvement and Engagement (PPIE) in health data projects
4. We will ensure that insights arising from the health data analysis we conduct will be appropriately shared across the health system for the benefit of patients and other researchers, as agreed with the data custodian
5. We will support robust health data privacy protections and will ensure compliance with all prevailing laws and regulations as they evolve

Further detail about the principles, and the commitments which underpin them, can be found here.

Dr Richard Torbett, Chief Executive of the ABPI, said:

“These principles demonstrate that trust, transparency and public involvement are at the heart of how the industry uses health data for the benefit of everyone.”

“Using health and genomic data can accelerate the understanding of disease, improve the efficiency of healthcare services and support the development of new medicines.

“UK health data has exceptional potential to advance these goals, as the NHS routinely collects and stores data on health services, treatments and outcomes across the country.

Kate Cheema, Director of Health Insights at the British Heart Foundation said:

“We welcome the publication of the ABPI's five principles. We are especially pleased to see the clear commitment to actively promote Patient and Public Involvement and Engagement (PPIE) in health data projects with a focus on robust measures to ensure diversity and inclusion.

“Harnessing the power of health data has a vital role to play in developing innovations in the prevention, diagnosis and treatment of heart and circulatory diseases, which affect 7.6 million people in the UK. That's why we are supporting tens of millions of pounds worth of research projects that use health data, including our £10 million BHF Data Science Centre in partnership with Health Data Research UK.”