Webinar: The impact of the national data opt-out on rare diseases
How might the national data opt-out impact on rare diseases?
On 25 May 2018 the national data opt-out launched. The opt-out allows people to choose whether or not they want their confidential patient information shared for purposes other than their own individual care.
This webinar will specifically look at how this new choice for patients might impact on rarer diseases and conditions.
Rachel Merrett, Head of Stakeholder Engagement at NHS England, will discuss what the national data opt-out is, before Philippa Shelton, Communications Manager at Understanding Patient Data, explains some of the current ways health data is used. We’ll then have plenty of time for you to ask questions, raise any concerns and discuss ways forward.
In particular we would be keen to hear:
- Your concerns about how the opt-out might affect the people you support
- Your concerns about how the opt-out might affect research or planning for the condition(s) you represent
- What's unique to rarer conditions that you think needs to be taken into account with the opt-out going forward
- What you think all of us can do to better talk to people with rare diseases about their choices?
To register, please email firstname.lastname@example.org. They will send you details on how to join the webinar.
If you have any questions or want to discuss this further please contact Hannah Chalmers at National Voices on email@example.com.