A movement for patients, relatives and carers Harnessing the patient voice to build confidence in the use of to save lives and improve outcomes

Read about some of our areas of policy lobbying and advocacy

Priority 1: Faster, safer and more transparent access to data for research

We want to help simplify the processes and reduce the timescales for ethical researchers (healthcare professionals, academics and companies) to access the data they need

Priority 2: The National Data Opt-out: Implementing patients wishes

Ensure that the National Data Opt-out is upheld effectively by the 54,000 organisations that it affects so that public confidence is gained and maintained

Priority 3: Highlighting the benefits of data usage

In a world which is largely focused on the risks of data, we work to help reassure the general public that our data is safe AND is being put to good use for public benefit

Project: The Patient Data Citation

"This work uses data provided by patients and collected by the NHS as part of their care and support"

Read about the development

Project: National Data Opt-out: information to patients?

Our work to examine what information is available to patients in GP Practices about the National Data Opt out

Read about this

Paper: Recognising patient responsibilities for data

A paper written by use MY data to examine whether the NHS Consitution could be rewritten to place as much emphasis on our responsibilities as patients as we have about our rights

Read our article

Project: Campaign for the use of tissue samples

A joint campaign with the Medicines Discovery Catapult is seeking to gain recognition that only 25% of tissue samples which are stored in tissue banks are actually used.

Read more here

Workshop: How to give active control to patients

Exploring the potential and current work which may be underway around the topic of data donation (similar to tissue donation). Begin with a workshop involving key organisations such as NHS Digital.

Read about the workshop here

Workshop: Improving the controls for access to data

Exploring the current controls which are in place, how these protect our data, but also how they may be preventing research from taking place.

Read about the workshop here

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