Patients4Datais a campaign to promote the power of patient data to drive the NHS toward more effective and better joined-up care, and to deliver treatments that save and extend lives.
Too often, care is fragmented and disjointed. The NHS is working towards better connecting information from patient medical records to uncover pockets of excellent care from which others can learn, and reveal incidents of sub-par care which must be addressed. Much of this effort is underway in the Care.Data programme, which can also better inform the NHS about how to allocate its resources. In addition, medical researchers seeking new treatments and cures for diseases can apply to use our data in their work.
Surveys have found that most of us are willing to have our health data analysed, as long as our privacy is protected. Patients4Data is campaigning for policies and legislation that protect patient privacy. We are pressing Government and the NHS for:
More transparency and better communications with the public and within the NHS about Care.Data
Protection of our privacy and anonymity with the use of minimal personal identifiers when data is extracted from our medical records
Strict confidentiality policies, tough punishments for anyone who violates them, along with vigilant monitoring and enforcement
Join the Patients4Data Campaign
Please sign up to join the campaign, receive bulletins, register a message of support, and share your story.
Patients4Data (Patients for Data) is a grassroots campaign organised by an independent, patient-led group focussed on the power of patient data to drive better care and better health. We are all patients who recognise the value of patient data and patient empowerment to improve patient outcomes. While we have no official role, we are very supportive of the aims and purpose of Care.Data. We see the initiative as an important step in moving the UK closer to personalised or stratified medicine as the optimum approach to 21st century healthcare.