In its 2020 Strategy Update, the Office for Life Sciences committed to establishing the Centre for Improving Data Collaboration (previously referred to as the Centre for Expertise), to provide specialist advice to health sector organisations entering into data partnerships and ensure these align with DHSC’s five guiding principles for data sharing.
There are five principles that stipulate what data sharing partnerships must do:
- Have an explicit aim to improve patient care and welfare.
- Deliver fair terms for your trust and the NHS as a whole.
- Do not prevent the use of this data for other beneficial purposes.
- Clearly and transparently communicate information to patients and the public.
- Adhere to all application laws and regulations including GDPR.
In particular, Trusts have been explicitly requested to abstain from granting any exclusivity to their data, while upholding the guiding principles.
The Centre’s remit pertains to any data sharing partnership related to health and care data, providing tailored commercial and legal advice to NHS Trusts, medical charities and other health sector organisations. At its core is the goal to ensure fair value return for patients and the health system from sharing of health data assets. It also aims to:
- determine how the value of health and care data can be realised, and ways in which this value can be redistributed to improve equity across the health system.
- increase trust in health data partnerships by promoting transparency and upholding the interests of the health service and the public.
- facilitate innovation to be driven from the ground up and based on system need, with health data owners feeling empowered to seek out commercial partnerships.
- make the UK a place where industry seeks to establish health data partnerships, bringing their benefit to the health system.
The Centre for Improving Data Collaboration will facilitate data partnerships in a manner that brings standardisation while allowing for local discretion and judgement. It does not intend to act as a regulator or carry out an approvals process, but to create an enabling environment for fair and safe data sharing partnerships.