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.
Members Learning Resources
On this page we are starting to build a series of learning resources for our Members. These are free for our Members to use. As we increase these we will notify Members in the weekly newsletter. If there are suggestions as to what you would find useful to include on this page, please email events@usemydata.org.uk
Statutory Guidance: NHS England’s protection of patient data Date: 26th June 2023 An education session with Osman Sabir and Gareth James (Department of Health & Social Care, Data Policy Department) to talk about the recent publication of Statutory Guidance issued to NHS England fdescribing to their role in the use and protection of NHS patient data.. The recording of the session is available here.
The National Disease Registration Service (NDRS) – an introduction Date: 19th June 2023 An education session giving background and understanding of National Disease Registration Service (NDRS), which includes information about the data, the processes, the uses and the challenges the service faces. The recording of the session is available here.
Artificial Intelligence and Machine Learning – an introduction Date: 15th May 2023 (repeated from 24th March 2023) An education session giving the background and understanding of Artificial Intelligence (AI) and Machine Learning (ML). The session was originally run as a precursor to our webinar “Artificial Intelligence; what's the reality?” and was repeated at the request from Members. The session includes aspects of terminology including big data, machine learning, risks, ethics and safeguards. Includes questions from the delegates. This one hour Educational Session ran on 24th February and was repeated (and recorded) on 15th May 2023. The recording of the session is available here.
Speak with the Analyst: session 2 Date: 5th May 2023 A session with Christine Delon from Cancer Research UK describing how she is using patient data to analyse cancer incidence by ethnicity in the England Cancer Registry, including how this work can help understand and address inequality. The recording of the session is available here.
Speak with the Analyst: session 1 Date: 28th April 2023 An education session Lucy Ross from Cancer Research UK on her work looking at repeat GP consultations for signs/symptoms of cancer before, throughout, and beyond the COVID-19 restrictions, and how her work can help patients and the public. The recording of the session will be available soon. Currently the results which are discussed in the session are unpublished and confidential.
Anonymised, pseudonymised, anonymous – what do these terms mean for patient data? Date: 24th February 2023 Different terms are often used to describe patient data which cannot be directly identified. As well as being confusing, these terms are often misused. The topic covered in this session has been suggested by some of our members to try and help aid people’s understanding of what these terms mean. During the session we explored what the various terms are that are frequently used, covering the differences between anonymised, pseudonymised and anonymous data, together with some of the benefits and difficulties of using these types of data. This one hour Educational Session ran on 24th February. The recording of the session is available here.
Environments & Children's Health Outcomes Date: 13th January 2023 Researchers from UCL Great Ormond street Institute of Child Health have just launched a programme called Kids Environment and Health Cohort which will allow researchers to study the link between environments in and around schools and homes, and children’s health and education. At this Members Education Session we heard the team talk about how they are linking environmental, health and education data and their research to date. We also heard about similar work which has been done over the past few years as part of the Born in Bradford project. The recording of the session is available here.
Personal Health RecordsFriday 2 December 2022 Have you ever heard the term Personal Health Record, and wondered what it is, who uses them, and if it the same as an Electronic Health Record? The recording of the session is available here.
Statistical Terms
Friday 11 November 2022 One of the common requests that we have from members is for an education session to provide a brief introduction to the various statistical terms relating to health care data that members may come across. This session was a short overview of the common statistical terms and methods used when presenting data about health care, how, where and why they are used, and what they should mean to you. A recording of the session can be viewed here
Synthetic (or Simulated) Data, what is it and how is it used?Tuesday 13 September 2022 In a world where there is often significant risk-aversion to the sharing of patient data, there has been increasing interest in the topic of synthetic data (sometimes called simulated data) to make research possible in a safe, secure way. In essence, synthetic data is designed to look closely like the real data it represents, but is completely fictitious. The Simulacrum is one example of synthetic data in real use. It is a database of artificial patient-like cancer data, which is being used by researchers with no danger of breaching patient confidentiality. At our interactive Education session, members had the opportunity to hear from Paul Berg, Head of Real World Solutions at IQVIA, and Julia Levy, Principal for Oncology Real World Evidence. Paul and Julia have been active users of the Simulacrum for some years, and described how the Simulacrum has been used, by whom, and for what benefit. The session was about real, actual, practical uses, not just the theory….! A recording of the session can be viewed here.
What’s in the new NHS Data Strategy, how does it reflect our own thoughts, and what do you think?Friday 15 July 2022 On 13 June the Department of Health & Social care in England published the new Data Strategy; “Data saves lives: reshaping health and social care with data”. The Strategy “sets out ambitious plans to harness the potential of data in health and care in England, while maintaining the highest standards of privacy and ethics.” On Friday 15th July we held an Educational Drop-In Session which looked at the contents of the Strategy, highlighted and discussed the key areas of interest to use MY data Members, flagged good point, bad points, any areas of concern and any things which we thought were missing. You can read the Strategy here: A recording of the session can be viewed here and the slides are available here. Why does it take so long for a researcher to get access to data to start their research?Friday 17, June 2022 On Friday 17 June, we ran a 1 hour educational session for our members on Why it takes so long for researchers to get access to the data they need in order to start their research. To give a first-hand account of the barriers researchers face trying to get hold of the data they need, we invited Professor Richard Feltbower to join us. During this session Richard walked through all the steps that he has to take to gain access to data to do his work, describing where he has experienced delays, his frustrations and suggestions for areas that need improvement. The slides are available here.A recording of the session can be viewed here.
The Goldacre Review: Better, Broader, Safer: Using Health Data for Research and Analysis – why is it so important, what are the findings and will it make a difference?
Wednesday, 11 May 2022 On Wednesday, 11 May, we ran a 1 hour educational session for use MY data Members on the topic The Goldacre Review: Better, Broader, Safer: Using Health Data for Research and Analysis - why is it so important, what are the findings and will it make a difference? In this session we explain what the Review says, why it is important and what the Review means in practical terms. We also covered how the Review has been influenced by use MY data’s position on Trusted Research Environments (TRE’s). The slides are available here. A recording of the session can be viewed here.
What does your health data actually look like? Educational SessionFriday, 22 April 2022On Friday 22 April we ran a 1-hour educational session for use MY data Members, on the topic What does your health data actually look like? During the session we walked through the process of how health data gets created, where it is held and what it looks like. We also covered where your data goes once it has been collected as part of your care. The slides are available here. A recording of the session can be viewed here.
Data to measure inequalities Educational SessionThursday, 3 March 10:00 - 11:00
On Thursday 3 March we ran a 1-hour educational session for use MY data Members, on the topic “Data to measure inequalities”. The session was held on Zoom and, as always with our activities, was free to attend. The session comprised a short presentation about different dimensions of equality, including an overview of what patient data exists to measure inequality. The session included a more detailed look at ethnicity data in particular, including where data is recorded (and where it isn’t), where it has been used to measure inequality in areas of health, and how you can see some of these results. This first educational session was a pilot for us to explore whether to run a series of similar events throughout the year. The purpose of the sessions was to provide an overview on specific data-related topics that our Members might want to find out more about. We wanted to make the event as interesting and useful as possible whilst also enabling a two-way dialogue, something which is often difficult to do online. A recording of the session can be viewed here. The slides for the session are available here
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