use MY data - Members

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 Anonymised, pseudonymised, anonymous – what do these terms mean for patient data? Date: 24^th 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: 13^th 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 Records Friday 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? Our use MY data educational session heard from one of our Members, Fran Husson, who is an active user of her own Personal Health Record. Fran explained what patient ownership of data actually means in practice and the positive difference having a Personal Health Record has had on her care. We were also be joined by Sally Rennison from Patients Know Best, the organisation which owns the most widely used Personal Health Record in the country, who talked us through how you can get a Personal Health Record and what the challenges the organisation faced in making them available. 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: https://www.gov.uk/government/publications/data-saves-lives-reshaping-health-and-social-care-with-data 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 Session Friday, 22 April 2022 On 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 Session Thursday, 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

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

Anonymised, pseudonymised, anonymous – what do these terms mean for patient data?

Date: 24^th 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: 13^th 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 Records

Friday 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?

Our use MY data educational session heard from one of our Members, Fran Husson, who is an active user of her own Personal Health Record. Fran explained what patient ownership of data actually means in practice and the positive difference having a Personal Health Record has had on her care.

We were also be joined by Sally Rennison from Patients Know Best, the organisation which owns the most widely used Personal Health Record in the country, who talked us through how you can get a Personal Health Record and what the challenges the organisation faced in making them available.

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:

https://www.gov.uk/government/publications/data-saves-lives-reshaping-health-and-social-care-with-data

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 Session

Friday, 22 April 2022

On 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 Session

Thursday, 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

Our mission

Personal Health Records

Statistical Terms

A recording of the session can be viewed here

Synthetic (or Simulated) Data, what is it and how is it used?

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?

Why does it take so long for a researcher to get access to data to start their research?

The slides are available 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?

What does your health data actually look like? Educational Session

Friday, 22 April 2022

Data to measure inequalities Educational Session

Thursday, 3 March 10:00 - 11:00