use MY data - blogs

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.

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

Data blogs

Whilst some of these blog posts are from use MY data members, others come from a range of sources which have been flagged by members. As ever, the content of these blogs is personal to the author.

Fairness: The importance of diversity in health data for creating better, fairer treatment for all
Jacqui Gath, Patient and Public Involvement and Engagement Group for DATA-CAN: The Health Data Research Hub for Cancer and use MY data Member
The importance of listening and changing
Dr Nicola Byrne, National Data Guardian for Health and Social Care in England
Living with
Dr Jennifer Jones, Research Associate, Genetic Alliance UK and a use MY data Associate Member
What’s the difference between the national collection of GP Data for Planning and Research and the OneLondon Local Health and Care Record?
OneLondon’s Chief Clinical Information Officers (CCIOs)
Who should I involve in my research and why? Patients, carers or the public?
authors from the National Cancer Research Institute (NCRI) Consumers Group
PIONEER and the Health Data Research Hubs – the story so far
Professor Liz Sapey, PIONEER Director
The benefits of community mental health standards
Sarah Markham, Patient Representative for the PRSB
Figuring it out - Reflections on Patient/Public Involvement with Numbers, Statistics and Data.
Derek Stewart, Lynn Laidlaw, Irene Soulsby and Beatriz Goulão Patient advocates
Primary Care Data – Raw codes to meaningful outputs
Matthew Conroy, NHS Business Intelligence Manager
Finding the vulnerable before COIVD does
Lee Gathercole, Technical Architect, NHS Digital.
Behind the scenes: Expanding the COVID-19 dashboard
Julian Flowers, Consultant in Public Health and Director of the Eastern Knowledge and Intelligence Team, Public Health England.
Researcher Experience
Dr Feifei Bu, Senior Research Fellow in the Department of Behavioural Science and Health at the University College London (UCL)
Fighting the Pandemic With Data: Why cancer data has never been so important by
Sarah Miller, Head of Informatics, East of England Cancer Alliance
Beyond trust: collective understanding of the common good and patient data
Dr Jessica Barnes, Psychologist/behavioural scientist & qualitative researcher, Cancer Behavioural Science Group, King’s College London
Wales’ life-changing rare disease research
Health and Care Research Wales
The INSIGHT Data Trust Advisory Board: data access criteria
Walter Pasquarelli, researcher and consultant.
Using real-time data and predictive analytics to improve cancer outcomes
DATA-CAN, the Health Data Research Hub for Cancer
What are data institutions and why are they important?
Jack Hardinges, Programme Lead, Data Institutions and Jared Robert Keller, Techincal Researcher (R&D), Open Data Institute
Understanding the value of Healthcare data.
Annemarie Naylor, Director of Policy & Strategy, Future Care Capital
Understanding the value of Healthcare data.
Annemarie Naylor, Director of Policy & Strategy, Future Care Capital
The Case for Cohorts – Revealing the ‘Before and After’ Response to COVID-19
Professor Nic Timpson, University of Bristol and Professor David Porteous, University of Edinburgh.
All data matters and all matters data – how Health Data Research hubs are unlocking the power of data
DATA-CAN, The Health Data Research Hub for Cancer
Using health data during the pandemic: the need for an accurate risk prediction tool on the frontline
Dr Frances Grudzinska, Specialist Registrar in Respiratory Medicine and Chair of the Respiratory Trainee Reserch Collaborative in the West Midlands
Blind data: how do patients really feel about anonymised health data use?
Pioneer, the Health Data Research Hub for Acute Care
All data matters and all matters data
How Health Data Research hubs are unlocking the power of data. A blog by DATA-CAN, the health data research hub for cancer, for the UK Bioindustry Association
How is additional information in Summary Care Records being used?
Tamara Farrar, User Researcher, NHS Digital
Using data to combat bias against ethnic minorities
The Centre for Data Ethics and Innovation (CDEI) has published the blog Using data to combat bias against ethnic minorities by Lara Macdonald
Are data repositories the future? An eCRUSADers conversation with DataLoch
Elizabeth Lemmon, Early Career Researchers Using Scotland Administrative Data (eCRUSADers)
Why Caldicott Principles and Caldicott Guardians are still relevant in 2020
Dame Fiona Caldicott, National Data Guardian
The future of healthcare: is it all about data?
Birgit Bauer, Editorial Board Member, Data Saves Lives
What we mean by trustworthy use of patient data
Grace Annan-Callcott, and Natalie Banner, Understanding Patient Data
Protecting and valuing our healthcare data
Lord Clement-Jones for Future Care Capital
Distributing access not data: monitoring who can access patient data - What does the future for access to sensitive health data for research look like?
Richard Welpton, Associate Member, use MY data
SAIL Databank - health data research during a global pandemic
Ashley Akbari, Senior Research Manager and Data Scientist, Swansea University
eCRUSADers: one year on
Elizabeth Lemmon, Early Career Researchers Using Scotland Administrative DATA (eCRUSADers)
Lessons from setting up the INSIGHT Data Trust Advisory Board
Walter Pasquarelli, Researcher and Consultant, Open Data Institute (ODI)
Introducing NHSXs patient and public voice partners
Linn Phipps and Michelle Thompson, NHSX Patient and Public Voice partners
Transparent Health Research whats in it for the public
Derek Stewart, Patient Advocate, HRAs Research Transparency Steering Group
The value of good data to patients
Samir Dhalla, Head of THIN (The Health Improvement Network) and Richard Ballerand, co-chair of THIN’s Patient Advisory Committee
Lord Freyberg on the social and economic potential of healthcare data
Lord Freyberg for Future Care Capital
People Make Data: Part 3
A patient perspective written by use MY data member Pete Wheatstone
Why are we waiting for Better Outcomes?
Emma Bird, a patient advocate, writes about the lack of patient data for metastatic cancers
The importance of data in fighting disease during the pandemic
Sarah Wilkinson, the CEO of NHS Digital, has written the blog The importance of data in fighting disease during the pandemic
How PIES [Public Involvement and Engagement Senate] helped to improve understanding about data sharing
Debbie Parkinson, Patient and Public Involvement Lead, Innovation Agency
One Cold and Wet Night late in January 2020
Chris Curtis, CEO, The Swallows Head and Neck Cancer Support Charity
Without Charities
The Association of Medical Research Charities (AMRC)
The COVID-19 dashboard: bringing together data and statistics in one place
Julian Flowers, Public Health England
Researcher Experience: Dr Drew Altschul.
Drew Altschul, Research Associate in the Department of Psychology, University of Edinburgh
Doing good with data: what does good look like when it comes to data stewardship?
Aidan Peppin, Researcher, Ada Lovelace
Making a Case for Data Sharing in Europe
Blog published on RARE-X
Citizen’s data, healthcare and trust
John Ainsworth and Niels Peek, University of Manchester
From diagnostic odyssey to involvement odyssey – an emotional journey.
Lynn Laidlaw, University College London (UCL)
Who owns patient data? The answer is not that simple
Alison Bourke, Scientific Director, Centre of Advanced Evidence Generation, IQVIA and Georgina Bourke, Designer and Strategist, Projects by IF
Using art to engage with people often not involved in research development and production
The National Institute for Health and Research (NIHR): School for Primary Research
COVID-19 data dashboards: From prototypes to a solution serving thousands in weeks.
Alistair Bullward, Product Owner for Open Data and Data Visualisation
Follow the Science, Follow the Data: the importance of using real-time data to respond to the effect of the COVID-19 pandemic on cancer.
Mark Lawler, Co-Chair of the European Cancer Organisation’s Special Focussed Network on Covid-19 and cancer
There is no single truth about Covid-19
Miles Sibley, Director at the Patient Experience Library
Data literacy: How to skill up the nation
David Spiegelhalter, former RSS President, Chair of the Winton Centre for Risk and Evidence Communication and Co-chair of the RSS Covid-19 Task Force, explains how we might prepare for the data economy by skilling up the nation
Key take away messages for early career researchers
a blog written by the use MY data Secretariat for the eCRUSADers early career researchers, as part of their series People Make Data
Patient and public involvement in covid-19 policy making
Tessa Richards, Senior Editor, Patient Partnership and Henry Sowcroft Patient Editor, on behalf of The BMJ’s International Patient and Public Advisory Panel
Ensuring ethnic diversity in COVID-19 research
Professor Kamlesh Khunti, Director and Professor Azhar Farooqi, Clinical Director, Centre for BME Health, University of Leicester
Research Data Scotland: A conversation with Roger Halliday, Chief Statistician (Scottish Government)
Elizabeth Lemmon, Early Career Researchers using Scottish Administrative Data
People Make Data
Elizabeth Lemmon, eCRUSADers
New Research in Oesophageal and Gastric Cancers
Pete Wheatstone, Patient Representative
Challenging Inequalities in Involvement for Black and Minority Ethnic Communities in Research
Derek Stewart, Patient Advocate
Data in the time of Covid-19
Grace Annan-Callcott, Communications Officer, Understanding Patient Data
Data and Covid-19: why standards matter.
Olivier Thereaux, Head of Research and Development, The Open Data Institute
Sharing health data for public good: a challenge rooted in trust and legitimacy.
Walter Pasquarelli, Researcher and Consultant, Open Data Institute (ODI)
Sweeping aside patient involvement during pandemic was too easy.
Rachel Power, CEO, the Patients Association
Back to the future? Patient participation in general practice during covid-19
Dr Jessica Drinkwater, General Practitioner
Using standards to make care safer and more personalised.
Professor Maureen Baker, Chair, The Professional Record Standards Body (PRSB)
The Issue with Tissue: towards a national registry of human tissue sampling.
Sarah Markham, use MY data member
Contact tracing app: implications for medical research and patients
The Association of Medical Research Charities (AMRC)
The researchers’ experience when attempting to access health data for research
National Cancer Research Institute
The Whys and Hows of applying to the Public Benefit and Privacy Panel for Health and Social Care (PBPP).
Elizabeth Lemmon, Early Career Researchers Using Scotland Administrative Data (eCRUSADers)
Reliable, real-world data on excess mortality are required to assess the impact of covid-19
London School of Hygiene and Tropical Medicine and Newcastle University.
Reflections of a new Director for Public Voice.
Jeremy Taylor, National Institute for Health and Research (NIHR) Director for Public Voice, NIHR Centre for Engagement and Dissemination (CED)
COVID-19, Cancer and Comorbidities: A Deadly Triumvirate
Mark Lawler, Health Data Research UK Associate Director
We’re all in this together’ – what does this mean for COVID-19 research?
Katherine Wright, published on Nuffield Council on Bioethics
Information Commissioner sets out new priorities for UK data protection during COVID-19 and beyond
Elizabeth Denham, Information Commissioner at the Information Commissioners Office
Public acceptability of data sharing for research: Trust, security and public interest
Elizabeth Waind, Communication and Engagement Officer, Administrative Data Research UK (ADR UK
Easier said than done: the challenge of transparency during Covid-19
Natalie Banner, Lead for Understanding Patient Data (UPD)
The human side of health data
Published by naturemedicine, featuring Natalie Banner, Understanding Patient Data
The toll beyond the covid-19 deaths
Tessa Richards, Senior Editor, British Medical Journal
The toll beyond the covid 19 deaths.
Tessa Richards, Senior Editor, British Medical Journal (BMJ)
Why safety will be paramount as digital care booms
Professor Maureen Baker, Chair, Professional Record Standards Body (PRSB)
Light amid the gloom
Tessa Richards, Senior Editor, British Medical Journal (BMJ)
A doctor’s view from the COVID frontline
Liz Sapey, Director of PIONEER, the Health Data Research Hub for Acute Care
The views of patients and the public should be included in policy responses to covid-19
Kaisa Immonen, Director of Policy, The European Patients’ Forum
The power of data in a pandemic.
Matthew Gould, Dr Indra Joshi and Ming Tang for NHSX
Data-driven responses to coronavirus are only as good as the trust we place in them
Aidan Peppin, The Ada Lovelace Institute
Using NHS Digital data to improve care
Dr Tom Foley, Senior Clinical Lead for Data at NHS Digital
GDPR for Biobanks - A sheep in wolf's clothing?
Heather Coupar, Programme Manager, Medical Research Council Regulatory Support Centre
Regulating Artificial Intelligence in health and care
Matthew Gould, Chief Executive Officer of NHSX
Patient Opinion: Challenges of information sharing in pathology
Sophia Turner, use MY data Advisory Group Member
World Cancer Day: a blog by patient advocate Richard Stephens
use MY data Advisory Group Member
Data analytics for better health - realising the potential for all
Adam Steventon, The Health Foundation
Early Career Researchers Using Scottish Administrative Data - Researcher experience
David Henderson, Edinburgh Napier University
Stronger Together � Key to transparency and trust
Sinduja Manohar, HDR-UK Public Engagement and Involvement Officer
A Patient Engagement Manifesto - 6 Principles of Partnership

A Patient Engagement Manifesto - 6 Principles of Partnership
Patient Empowerment Network
Why I want � and expect � my data to be used for cancer research

Margaret Grayson, Why I want � and expect � my data to be used for cancer research
Margaret Grayson
Patient data was used by the brainstrust to show that non-malignant brain tumours are not harmless

Patient data was used by the brainstrust to show that non-malignant brain tumours are not harmless
Innovative use of patient data
The reality of NHS patient record access

Daniel Bayley, blogger with an interest in 'Information Technology, programming, health, fitness and photography enthusiast'
The reality of NHS patient record access
Begging to work for free - patient advocates speak up

Liza Bernstein, patient advocate and Consultant for Insights and Development at Symplur
Begging to work for free - patient advocates speak up
Data driven innovation and meeting patients reasonable expectations about data use

Dame Fiona Caldicott, National Data Guardian
Data driven innovation and meeting patients reasonable expectations about data use
Not just about the numbers: the power of data to drive change

Filipe Santos, The Health Foundation
Not just about the numbers: the power of data to drive change
Blog from Cancer Mum

Cancer Mum
So what do Patients and Citizens want from accessible Health Records?
Patient involvement in PROMS - individual opportunity and strategic challenge

Patricia Holch, Roger Wilson, Jennifer Bostock in bmjopinion

Patricia Holch, Roger Wilson, and Jennifer Bostock in bmjopinion
Towards a Sovereign Health Fund

Anne-Marie Naylor, REFORM

Anne-Marie Naylor
Blog about the use MY data workshop; All talk and no access?

UKCRC Tissue Directory and Coordination Centre

UKCRC
Blog about the use MY data workshop; All talk and no access?
How medicine is broken, and how we can fix it

Paul Affleck, Programme Manager, Bowel Cancer Intelligence UK (BCI-UK)

Paul Affleck
How medicine is broken, and how we can fix it
People powered genomics

Vivienne Parry, Head of Engagement at Genomics England

Vivienne Parry
People powered genomics
Consent - too much of a good thing?

Ben Johnson, Public Advisory Board member, HDR-UK

Ben Johnson
Consent - too much of a good thing?
Making Public Engagement work for all. Lynsey Cross, Swansea University & HDR UK Public Engagement Officer for Wales and Northern Ireland

Lynsey Cross
Making Public Engagement work for all
Free text: to share or not to share?

Lamiece Hassan
Free text: to share or not to share?
Leave no patient behind: lessons from genetics on the risks of biased data

Karen Hodgson
Leave no patient behind: lessons from genetics on the risks of biased data
Patient participation ensures data are accurate and useful

Sarah Markham
Patient participation ensures data are accurate and useful
"Say what you do; Do what you say" - a REFORM blog by use MY data

use MY data
"Say what you do; Do what you say" - a REFORM blog by use MY data
The importance of good-quality hospital data - "there is room for improvement in the quality of hospital data"

Therese Lloyd
The importance of good-quality hospital data
�Researchers don�t know what they�re missing� � the impact of patient involvement in research

Kristina Staley
�Researchers don�t know what they�re missing�
Harnessing the value of NHS patient data

Jessamy Bagenal and Annemarie Naylor
Harnessing the value of NHS patient data
Patient data is all about asking questions

Simon Denegri
Patient data is all about asking questions
The new Gift Relationship between the public and the NHS. Not blood but data

Paul Corrigan
The new Gift Relationship between the public and the NHS. Not blood but data
My fiancee is gone but she�s still helping others fight cancer. A moving article by Henry Scowcroft printed in the Guardian newspaper.

Henry Scowcroft
My fiancee is gone but she�s still helping others fight cancer
Macmillan�s Julie Flynn guides us through the complicated world of cancer data

Julie Flynn
Sharing is caring - or is it?
Big data: Everyday opportunities to improve care?

Dr Tom Foley & Dr Neil Lawrence
Big data: Everyday opportunities to improve care?
Data protection versus health protection

Professor Peter Saseini
Data protection versus health protection - the need to balance data sharing and data protection
Cancer Research UK - Patient data saves lives. Here�s how we use and protect it

Richard Welpton
Cancer Research UK - Patient data saves lives. Here�s how we use and protect it
Insight research programme: unlocking the power of audits and registries

Diane Redfern-Tofts
Insight research programme: unlocking the power of audits and registries
Your data, your power: How you can help save lives

Melody Paton Borchardt
Your data, your power: How you can help save lives
Alison Stone, Coordinator for use MY data, "Patient data saves lives, lets acknowledge it"

Alison Stone, use MY data
Patient data saves lives, lets acknowledge it
Dan Wellings from The Kings Fund, talks about public engagement � pitfalls, barriers and benefits

Dan Wellings, The Kings Fund
Public engagement � pitfalls, barriers and benefits
If you want something done well, do it yourself....

After Breast Cancer Diagnosis
If you want something done well, do it yourself....
Big Brother Watch - NHS, DeepMind and the ICO: The importance of privacy in a modern NHS

Big Brother Watch
NHS, DeepMind and the ICO: The importance of privacy in a modern NHS
James Hargrave, Empower: Data4Health

James Hargrave
Empower: Data4Health
Shrenik Shah, 20 year Cancer Survivor

Shrenik Shah
Shrenik Shah, 20 year Cancer Survivor
David Gilbert, Patient Director, Sussex MSK Partnership (Central)

David Gilbert
Patient Director, Sussex MSK Partnership (Central)
Chris Carrigan, Patient advocate

Chris Carrigan
Patient Advocate, use MY data member
Roger Wilson

Roger Wilson
Cancer Patient, Member of Independent Cancer Patients Voice (ICPV), Member of use MY data
Heather Lawrence

Heather Lawrence
Breast Cancer Now supporter and media volunteer
Jem is Director of the

National Cancer Registration

and Analysis Service (NCRAS).

He is a keen advocate of the

uses of cancer data,

and a regular blogger.

Jem Rashbass
Director, National Cancer Registry and Analysis Service
Lucy is the Head of Analysis

at the National Cancer

Registry and Analysis service.

She blogs about uses of

cancer data, in

particular Routes to Diagnosis.

Lucy Elliss-Brookes
Head of National Analysis, National Cancer Registry and Analysis Service