Our mission

use MY data is a movement of patients, carers and relatives

use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes.

use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all.

use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.

Organisations which use MY data members feed back to

"There is no data about us, without us, so use our data to help us, and all the other cancer patients who will be coming in the future."

Patient advocate, use MY data

Our members are linked, or feed back to the following organisations

Some of the organisations which use MY data members feedback to:

100,000 Genome Project
Academic and patient research groups - various
Academic Health Science Network for the North West Coast
Aintree Lung Support Group
Barnet Healthwatch Primary Care Group
Beat Kidney Stones
Bowel Cancer Intelligence UK (BCI-UK)
Brighton Hove Cancer Communications Group
Bromfield Hospital
Broomfield Hospital patient cancer group
Cancer Registry
Cancer Research UK
Cancer Research UK patient group
Cancer support groups
Cancer Survivors Network
Carers together
CCL Association (Chronic Lymphocytic Leukaemia)
Centre for Obesity Research
Childhood Cancer Parents Alliance (CCPA)
Chronic Lymphocytic Leukaemia Support Association
Chronic Myeloid Leukaemia (CML) Cancer Support Group
Clinical Commissioning Group
Clinical Informatics Research Group, Dept. of Medicine, University of Cambridge
Clinical Trials Dispensary, Addenbrookes
Community Voice
Connected Health Cities
Coventry, Warwickshire & Worcester local cancer group
Disability Forum
Early Diagnosis Group, Department of Primary Care, Cambridge University
East of England Cancer Alliance Patient Advisory Board
Empower Data4Health
Ethics & Governance office, Wellcome Trust Sanger Institute
Glasgow Biorepository
Glasgow Biorepository management committee
GP Patient Participation Groups
Group concerned with Early Phase clinical trials and the use of patient data including genomics in these
Guise & Dolls Head & Neck Cancer Support Group
Guy's & St Thomas NHS Foundation Trust
Harrogate Health Care Trust
Healthwatch Central West London
Healthwatch volunteers
HQIP (Healthcare Quality Improvement Partnership) Service User Network
I Had Cancer
Independent Cancer Patients' Voice
Innovation Agency North West Coast
Institute of Psychiatry, Psychology & Neuroscience (IoPPN), King's College London
King's College London
Leeds Centre for Personalised Medicine & Health
Leeds Institute for Data Analytics
Liverpool Health Lung Project
Local Cancer Alliance
Local cancer groups across West Midlands and local Health Watch
Local groups, friends, relatives and neighbours
Local hospital Cancer Management Board
Locality Patient Participation Groups
London Transferring Cancer Services (NHSE) - patient advisory group
Lymphoma Support for You
Macmillan Cancer Support
Macmillan Cancer Support patient group
Macmillan Community
Macmillan Geriatric Oncology Expert Reference Group
Macmillan volunteers LASER (London, Anglia and South East England)
Medicines Discovery Catapult
Mid Essex Cancer User Group
National Cancer Research Institute (NCRI) patient liaison group
National Cancer Research Institute / Cancer Research UK Consumer Forums
National Coalition for Cancer Survivorship (USA)
National Data Group
National Institute for Health Research (NIHR)
NCRI Cellular Molecular Pathology Initiative (NCRI CM-Path)
NCRI Clinical and Translational Radiotherapy Research Working Group (NCRI CTRad)
NCRI Consumer Forum
NCRI Consumer Forum / Brain Clinical Study Group
NHS cancer patient group
NHS Digital Programme teams (Information Representation Service and WiFi)
NHS England / Public Health England workshops, as appropriate
NHS Patient & Public Involvement representative & trainer
NI Cancer Consumer Forum
NIHR (National Institute for Health Research) Biomedical Research Centre, University College London
North Derbyshire Cancer Action Group
Northern Ireland Cancer Research Consumer Forum
Pancreatic Cancer UK
Patient & Public Involvement Advisory Group (PPIAG), Biomedical Research Centre,
Patient and carer research review panel, National Research Ethics Centre (NREC) - London - Hampstead
Patient Educator Programme, Kings College London
Patient Participation Group
Patient research advisory groups with which I am involved. Shared generally locally to home via parish nurse project. Also to the health professionals from research with which I am involved.
Patient Voice & Insight Group
Patients in research groups at local and regional trusts and universities including Research Design Service Yorkshire and the Humber (RDSYH), as well as other research involvements and contacts namely; GP Patient Participation Groups and Clinical Commissioning Group networks
PIER (Patients involved Enhancing Research) - HSC (health & social care) Research and Development
PPI panel at Guy's Hospital
Public Health England
Public Health England Screening programmes
Research Design Service Yorkshire & the Humber, PPI Research Forum
Royal College of Midwives (information gained will be used to review the Code of Practice for storage of residual blood spots - NHS Newborn Blood Sport Screening Programme)
Royal College of Radiologists
Royal Marsden / Institute of Cancer Research
Screening Quality Assurance Service London, London + national data group
SELCRP (South East London Cancer Research Panel - PPI panel)
Several patient research advisory groups with which I am involved. Shared generally in our villages via parish nurse project. Also to the health professionals from research with which I am involved.
Shine Cancer Support
South East London Consumer Research Panel for Cancer, Biomedical Research Centre,
Speak Easy
STP (Sustainability and Transformation Partnerships) Service User Advisory Group
Sussex Cancer Action Group
Sussex Cancer Patient Partnership Group
The Brain Tumour Charity
The Farr Institute
The Royal Marsden Biomedical Research Centre, Clinical Research Facility (CRF)
The Royal National Orthopaedic Hospital's Patient Group
Trials Unit
Understanding Patient Data
University College London (UCL) / UCL BioMed Central cancer
University College London Hospitals (UCLH) Cancer Patient and Public Advisory Group
University of Cambridge PC Research PPI
West Midlands Strategic Clinical Network (WMSCN) Cancer Patients/Carers Voice / Insight Group
WH Cancer Network PV + I group
WMSCN (West Midlands Strategic Clinical Network) for patients/carers
Work colleagues
Yorkshire and Humberside Consumer Research Panel
Yorkshire Cancer Network Forum
Yorkshire Cancer Patient Forum

If you would like show your support for use MY data, please email

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