use MY data - events

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.

Upcoming events

Date	Location	Details and registration
27 Sep 2022		Title: Does the NHS sell my data? Date: Tuesday 27 September 2022 Time: 2.00-5.00pm (including a 15 minute break) “NHS patient data to be made available for sale!” “NHS shares English hospital data with dozens of companies!” “NHS data grab!” Just what is the NHS doing with our data? What are the facts behind these headlines? Our next FREE webinar is the opportunity for you to find out! Our webinar 'Does the NHS sell my data?' will explain the reality behind the NHS ‘selling’ our data, explore and explain “cost-recovery” models, and consider how the NHS might best exploit our data as an asset to add value to our care and to research. This webinar will take a long hard look at these issues, as requested by many of our members. We have secured nine speakers to offer a range of perspectives and real-life examples, from those “selling” and those “buying” our data and from those collecting and storing it, and from all four nations in the UK The event will be chaired by use MY data member Debbie Keatley, with plenty of opportunities for you to ask questions and make comments. Registration is now open for what we know will be a very popular event, but places are limited. Book now to avoid disappointment. Speakers: Jo Gumbs – use MY data Advisory Group Member Jo is a use MY data Advisory Group Member. Jo will challenge the other speakers on how they can address the concerns of patients and the public. Michael Chapman – NHS Digital NHS Digital are the people who store our data in England. At any time, NHS Digital has around 1,000 active data sharing agreements (published in the NHS Digital Data Uses Register) and the organisation receives a similar number of new applications or requests for amendments each year. Running this process incurs a cost. Michael will talk about how data held by NHS Digital is being used to improve health and social care and the current approach to recovering the costs to the NHS of managing these applications and making data available to users for the benefit of health and social care. Claire Bloomfield & Kelly Lin – NHS England As well as improving care now, using high quality data allows innovators and researchers to develop technologies and techniques that will improve patient care in future. But it costs money to collate and clean this data and to provide it in secure environments for analysis. Kelly will discuss NHS England’s current thinking around how to support Research and Development (R&D) whilst also making sure that there is value coming back for the NHS. There is a new joint funding package of up to £200 million between NHS England and NHS Improvement, Department of Health & Social Care and Department for Business, Energy & Industrial Strategy. This will fund investment in NHS data infrastructure to help put the NHS in the driving seat of data-driven research and innovation. Claire will discuss how this will help accelerate key pieces of work already underway across the NHS, including moving from data-sharing to data-access, creating and using Secure Data Environments and Trusted Research Environments. Phil Booth – MedConfidential With the Government’s commitment to end the dissemination of patients’ data, and with all data access for purposes beyond patients’ individual care taking place by default in Trusted Research Environments or their ‘Five Safes’ equivalent, the question will not be so much about “selling” data so much as who pays for any additional processing power required, and what public value is generated. Phil will talk about what he believes needs to be fixed to gain public trust. David Ford – SAIL Databank The SAIL Databank has been able to grow though a mixture of core support from Welsh Government; grants from academic funders, such as the ESRC; and from cost recovery charges levied on researchers wanting to access the data within SAIL. David's talk will provide further detail of this model and discuss some of the issues that SAIL has wrestled with over the years to make sure it remains sustainable but also fully accountable to the public. Roger Halliday – Research Data Scotland Roger will discuss Research Data Scotland's (RDS) pricing and how it is dependent on datasets requested and the level of assistance required and how all results from research conducted through RDS must be capable of being published for the public benefit. Vicky Chico – Office of the National Data Guardian The narrative around NHS data grabs and the NHS selling data does not sit well with the expectation that public benefit should be driving decisions about uses of health and care data. Vicky will talk about their public dialogue work in which they found that people were readily prepared to recognise that a benefit to the health system broadly was a public benefit. The feeling that the NHS should receive something in return where it provides data for an initiative that produces profit, is a common theme in the literature exploring public attitudes in use of data collected through health and care. Geoff Hall – Leeds Teaching Hospital Trust Geoff will talk about how Leeds Teaching Hospital Trusts/University of Leeds have developed ways of working for mutual benefit, so the Trust learns more from the data it holds, to improve care, efficiency and outcomes. Such partnerships with outside organisations are often overlooked but are increasingly important to the way the NHS runs and the ways that individual Trusts improve their services.

Date

Location

Details and registration

27 Sep 2022

Title: Does the NHS sell my data?
Date: Tuesday 27 September 2022
Time: 2.00-5.00pm (including a 15 minute break)

“NHS patient data to be made available for sale!”

“NHS shares English hospital data with dozens of companies!”

“NHS data grab!”

Just what is the NHS doing with our data? What are the facts behind these headlines?

Our next FREE webinar is the opportunity for you to find out!

Our webinar 'Does the NHS sell my data?' will explain the reality behind the NHS ‘selling’ our data, explore and explain “cost-recovery” models, and consider how the NHS might best exploit our data as an asset to add value to our care and to research.

This webinar will take a long hard look at these issues, as requested by many of our members. We have secured nine speakers to offer a range of perspectives and real-life examples, from those “selling” and those “buying” our data and from those collecting and storing it, and from all four nations in the UK

The event will be chaired by use MY data member Debbie Keatley, with plenty of opportunities for you to ask questions and make comments.

Registration is now open for what we know will be a very popular event, but places are limited. Book now to avoid disappointment.

Speakers:

Jo Gumbs – use MY data Advisory Group Member
Jo is a use MY data Advisory Group Member. Jo will challenge the other speakers on how they can address the concerns of patients and the public.

Michael Chapman – NHS Digital
NHS Digital are the people who store our data in England. At any time, NHS Digital has around 1,000 active data sharing agreements (published in the NHS Digital Data Uses Register) and the organisation receives a similar number of new applications or requests for amendments each year. Running this process incurs a cost. Michael will talk about how data held by NHS Digital is being used to improve health and social care and the current approach to recovering the costs to the NHS of managing these applications and making data available to users for the benefit of health and social care.

Claire Bloomfield & Kelly Lin – NHS England
As well as improving care now, using high quality data allows innovators and researchers to develop technologies and techniques that will improve patient care in future. But it costs money to collate and clean this data and to provide it in secure environments for analysis. Kelly will discuss NHS England’s current thinking around how to support Research and Development (R&D) whilst also making sure that there is value coming back for the NHS.
There is a new joint funding package of up to £200 million between NHS England and NHS Improvement, Department of Health & Social Care and Department for Business, Energy & Industrial Strategy. This will fund investment in NHS data infrastructure to help put the NHS in the driving seat of data-driven research and innovation. Claire will discuss how this will help accelerate key pieces of work already underway across the NHS, including moving from data-sharing to data-access, creating and using Secure Data Environments and Trusted Research Environments.

Phil Booth – MedConfidential
With the Government’s commitment to end the dissemination of patients’ data, and with all data access for purposes beyond patients’ individual care taking place by default in Trusted Research Environments or their ‘Five Safes’ equivalent, the question will not be so much about “selling” data so much as who pays for any additional processing power required, and what public value is generated. Phil will talk about what he believes needs to be fixed to gain public trust.

David Ford – SAIL Databank
The SAIL Databank has been able to grow though a mixture of core support from Welsh Government; grants from academic funders, such as the ESRC; and from cost recovery charges levied on researchers wanting to access the data within SAIL. David's talk will provide further detail of this model and discuss some of the issues that SAIL has wrestled with over the years to make sure it remains sustainable but also fully accountable to the public.

Roger Halliday – Research Data Scotland
Roger will discuss Research Data Scotland's (RDS) pricing and how it is dependent on datasets requested and the level of assistance required and how all results from research conducted through RDS must be capable of being published for the public benefit.

Vicky Chico – Office of the National Data Guardian
The narrative around NHS data grabs and the NHS selling data does not sit well with the expectation that public benefit should be driving decisions about uses of health and care data. Vicky will talk about their public dialogue work in which they found that people were readily prepared to recognise that a benefit to the health system broadly was a public benefit. The feeling that the NHS should receive something in return where it provides data for an initiative that produces profit, is a common theme in the literature exploring public attitudes in use of data collected through health and care.

Geoff Hall – Leeds Teaching Hospital Trust
Geoff will talk about how Leeds Teaching Hospital Trusts/University of Leeds have developed ways of working for mutual benefit, so the Trust learns more from the data it holds, to improve care, efficiency and outcomes. Such partnerships with outside organisations are often overlooked but are increasingly important to the way the NHS runs and the ways that individual Trusts improve their services.