Our guiding principles for data partnerships
Commercial data partnerships are essential to maximising the impact of Patient-Derived Data but must be established in a safe, secure and transparent manner. To ensure this we have developed, in close consultation with patients, a set of guiding principles for commercial data partnerships that protect patients, our partners and our data.
Protecting our data
Over the past five to 10 years, thanks to advancements in data generation and analytical technologies, the role of data in tackling cancer has become increasingly important.
Cancer Research UK is the leading non-governmental funder of cancer research in the world. This means our research network is responsible for the generation of huge amounts of data generated through clinical trials or research projects performed outside standard clinical care (Patient-Derived Data). At Cancer Research Horizons, we believe that through establishing commercial data partnerships, we can maximise the impact of this Patient-Derived Data and drive further patient benefit.
We recognise the sensitivities involved in sharing of Patient-Derived Data, and are committed to maintaining trust, transparency and accountability in our data partnerships. That's why, in consultation with patients, we've developed our 'Guiding Principles for Commercial Data Partnerships'.
These principles cover
- Transparency & Accountability
- Data Security & Management
- Protecting Academic Research
- Fair Partnership
What do we mean by data partnerships?
‘Data partnerships’ are collaborations, licences and other forms of formal partnerships with a commercial entity that relate specifically to Patient-Derived Data in which the commercial entity acquires rights or access to the underlying Patient-Derived Data.
How did we develop these principles?
We conducted several consultations with people affected by cancer during development of these principles. From these consultations we wanted to understand
1) how to effectively involve patients in decisions around commercial data partnerships
2) the principles we should adopt to ensure any partnerships involving Patient-Derived Data have clear benefits for people affected by cancer without unacceptable risk.
Patient involvement formed the bedrock from which our guiding principles were built in addition to public and private sector consultation, ensuring they represent emerging best practice. These principles will be reviewed and updated in consultation with patients at least annually to ensure that they are up to date and reflect the evolving landscape.
Our guiding principles form just one part of our overarching framework for ensuring commercial data partnerships are in the interests of people affected by cancer. In addition to these principles, Cancer Research Horizons carries out detailed due diligence, involve people affected by cancer and enforce legal contracts before any commercial organisation accesses patient-derived data.