How would you like to be informed and involved in the reuse of your health data? 

Ensuring the right data is shared with patients.

Patients aren’t best equipped to make use of some highly specialized health data. Such data needs to be made usable or actionable, requiring access to resources or services in order to respond to the data presented. For instance, blood iron results available on an online patient portal might be interepreted (wrongly) as worrying or bad and result in them going to A&E or a GP. Have to be careful to avoid thinking access to data will lower dependency on the health service and administrators when it could in fact increase infrastructural burden.

Within the context of more cohesive and connected arrangements, there must be space for critical perspectives. It is therefore important to engage with the full breadth of stakeholders (not simply different regulators, a handful of influential academic institutions and industry with vested interests). This should include wider perspectives that may interrogate government policy to ensure the commitments to privacy and other rights are upheld. Mechanisms can include broader engagement with more diverse academic, policy and advocacy groups, as well as more direct contact with those most at risk of harms through mechanisms such as citizen assemblies which have given voice and support to more far-reaching measures in issues like climate change.