The Association of the British Pharmaceutical Industry (ABPI) has proposed a set of draft principles on the use of health data. This aims to implement lessons learned from the COVID-19 pandemic response, and ensure increased transparency as to the use of health data.
The collection of health data is increasingly important, both in the development of new therapies and treatments, and in enabling patients to receive better care. Throughout the pandemic, the NHS has collected an enormous amount of health data from the general public, which has been crucial to developing COVID-19 vaccines and treatments. However, it is essential to build public trust around the collection of health data, and provide enhanced clarity and transparency as to how the data is being used.
The new principles, designed to address these concerns, are outlined below.
The proposed principles
- Transparency. Company researchers must be open and clear as to what they are going to do with health data. The public should know why their data is being collected and what it is going to be used for.
- Clarity of arrangements. Data custodians should receive a fair value for their data contribution, regardless of the outcome of individual projects. Whether the health data collected and used was or was not useful, the contractual arrangement in place should be fair.
- Patient/public involvement and engagement (PPIE). Patients and members of the public providing the data should be consulted and engaged throughout the process.
- Non-exclusivity of arrangements. Contractual arrangements should be in place to ensure that benefits can be felt by all appropriate patients, and across the entire United Kingdom health service.
- Compliance with prevailing laws and regulations. All legal, compliance and regulatory (including privacy and security) obligations, should be adhered to. This will help to ensure that data is safely protected and will provide comfort to the public.
As is evident from the proposed principles, the aim is to ensure health data is used properly and in ways that build trust, with the public, that the scientific community will use and protect data correctly.
The ABPI is currently running a consultation on the draft principles – you can access the consultation here and provide feedback by 11th March 2022. This timely initiative promises to provide a useful framework in this fast-growing area.