A movement of patients, carers and relatives
Harnessing the patient voice to build confidence in the use of patient data to save lives and improve outcomes
Our Impact
Recognising the patient contributionRead about the development and implementation of our Patient Data Citation Education and informationWe host regular events examining patient data topics, as requested by our Members. We update our Membership on a weekly basis, with a recent patient data items and engagement opportunities Listening and engagementOur unique status as a patient-led movement has enabled us to cut across the ‘worry spectrum’ and bring different views together The National Data Opt-out: Getting information to patientsA use MY data survey across Primary Care Helping patients understand their data choicesThe National Data Opt-out and what it means for cancer patients Stimulating national debate‘What-if’ paper on patients’ rights and responsibilities Campaighing and influencingJoint campaign on low use of tissue samples Specialist patient input to national patient data workuse MY data members provide expert input into a range of activities & bodies Coordinating a patient voice on consultations and policyUniquely, as a patient movement, we have coordinated responses to several national consultations, directly using the words of our members. Read more here.
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