How we work with patients and the public
Our Patient and Public Involvement and Engagement (PPIE) group helps ensure we act fairly and openly, in the best interests of patients.
By working together, we are able to ensure that health data is used responsibly, and that the benefits of improved access to data for researchers are returned to the NHS and the wider UK community.
Patients are active participants and leaders in all that we do. We ensure this by:
- Having an engaged patient advocate group to represent our national ambition
- Engaging with and representing the diverse cancer population of the UK
- Engaging with existing patient advocacy champions
- Recruiting patient and public participants in an open manner
- Having a patient advocate/citizen lead on every DATA-CAN project.
An article highlighting DATA-CAN’s innovative way of working, which places the patient front and centre in all their data activities and decisions, has been published in the Partnerships in Practice section of the highly respected British Medical Journal (BMJ).
We operate by the principles of transparency developed by use MY data. Our patient and public members are proactively offered training to empower them in their role with DATA-CAN.
Members of the Patient and Public Involvement and Engagement Group have produced a lay summary of the Collaborative Agreement between the founding partners of DATA-CAN.
I am immensely proud of DATA-CAN and our achievements in making cancer data more widely accessible for research. We have demonstrated the value of genuine patient and public representation across all work programmes and the difference that DATA-CAN’s work can ultimately make to cancer patients and services.
Pete Wheatstone, Chair of DATA-CAN’s Patient and Public Involvement and Engagement Group
How can I get involved?
If you would like to find out more about getting involved please email contact@data-can.org.uk
Find out more about patient data and research
- Read more about DATA-CAN’s novel approach to patient and public involvement and engagement in the British Medical Journal – DATA-CAN: a co-created cancer data knowledge network to deliver better outcomes and higher societal value.
- Find out more about our Patient and Public Involvement and Engagement plans.
- For more information about how patient data is used in health and care and the ethical and legal considerations, please visit Understanding Patient Data.