The Alliance has an unprecedented opportunity to work together to help shape patients, public and healthcare practitioners’ perceptions of health data research. This is achieved through developing a single coherent approach to:

  • Understanding the interests and values of practitioners, patients and the public in health data use
  • Engaging with practitioners, patients and the public in ongoing dialogue
  • Demonstrating impact, outcomes and success to population through stories
  • Being open, transparent and accountable on how and why data is gathered, stored, secured, safeguarded, accessed, used and shared
  • Being accessible and inclusive of diverse communities and groups

All Alliance member organisations are involved in efforts to engage and involve practitioners, patients and the public. Pooling these endeavours gives the Alliance the reach and influence to develop more joined-up public and patient engagement, working with Understanding Patient Data, The Health Foundation, medical research charities and frontline NHS staff.

The initial task for the Alliance Public and Patient Engagement Delivery Sub-Group is to develop a green paper on options for joined-up public and patient engagement. This is incorporating the outputs from a baselining exercise of current approaches across the Alliance, an understanding of best practice engaging with patients and the public in ongoing dialogue and pooling stories of positive impact.

It is drawing on input from the International Council of Reference and include co-ordination with other parties engaged in similar work.

If you would like more information on this project or you are interested in contributing, please contact us at