use MY data - WorkingWith

A trusted patient voice on patient data - organisations that we formally engage with As a trusted patient voice on patient data, we engage with a variety of organisations. Our work is not about providing approval or endorsement, rather our Members use their lived experience to provide views on the use of patient data. As a priority, the Secretariat always strives to ensure that our Members are reimbursed for regular engagement work. For some engagement arrangements, use MY data as an organisation receives a contributory payment, which goes towards the running of use MY data. Current engagement work Association of the British Pharmaceutical Industry (ABPI) Arrangement use MY data’s Advisory Group will operate as an ‘ideas test bed’, offering opinions and ideas on the ABPI programme without directly advising the ABPI. Background The Association of the British Pharmaceutical Industry (ABPI) approached use MY data to discuss the possibility of engagement work. Following discussions with the Advisory Group and joint creation of Terms of Reference (ToR), the agreement is now in place, initially running from 01 July 2022 until the end of 2023, at which point it will be reviewed. The engagement work is likely to begin this September. From the ToR: “The purpose of the relationship is to enable the ABPI to work with use MY data’s Advisory Group to create a test bed for messaging and approach. This will inform the ABPI’s multi-year engagement programme to build public confidence in industry use of health data for research purposes.”. While discussions will be of a confidential nature, a condition of use MY data entering into the agreement was for the arrangement and funding details to be declared publicly by use MY data and the APBI, for transparency. The ABPI agreed to this: “The ABPI respects the position of use MY data as an independent patient movement and will make public the relationship, including details of any funding provided”. Information about the organisation The Association of the British Pharmaceutical Industry (ABPI) represent companies of all sizes who invest in discovering the medicines of the future. The ABPI exists to make the UK the best place in the world to research, develop and use new medicines and vaccines. NHS England (and previously NHSX) Arrangement no.1 Contributing to the production of Information Governance materials. Background In 2021 NHSX (now NHSE) asked the Advisory Group to review, edit or draft sections of their updated Information Governance documents, specifically for the patient-focused sections of the documentation. We continue to do this work on an ad-hoc basis as needed by NHS England. We do not have a formal contract for this work and have not requested any payment for our input to this important work. Arrangement no.2 A formal place on NHS England’s Accelerating Citizen Access to their GP held-data Senior Responsible Officer (SRO) Steering Group. This work first developed under NHSX. At present two Advisory Group Members are in a panel pool, covering our representation (we are allowed to send one representative per panel meeting). Background use MY data was invited to sit on this Steering Group following our work, first with NHSX and then with NHS England, on patient access to patient records, including our Call to Action ‘My access to my health records’. The purpose of the group is to provide advice on the relaunch of the NHS App, to make access to future GP health records more widely available to the public. Our representatives are now in the process of reviewing and discussing the Terms of Reference (ToR) with NHSE, as we did not receive the ToR prior to the first meeting and have requested an amendment. The Steering Group is a closed one and meeting content will not be made public. After discussions with our Advisory Group, the Secretariat advised NHSE that as a minimum, use MY data would need to declare our involvement with the Steering Group for transparency, first to our Membership and then on our website. We have obtained agreement that our representative on the Steering Group can provide meeting feedback to the Advisory Group. Regrettably, we are not permitted to share information more widely. You can read a more complete update on this work here. We continue to do this work on an ad-hoc basis as needed by NHS England. We do not have a formal contract for this work and have not requested any payment for our input to this important work. Arrangement no.3 Contributing to the production of public-facing materials about Federated Data Platforms. Background In November 2023 NHSE sought the help of use MY data Members across the UK, to help develop public facing web content about Federated Data Platforms. This would be to take part in two workshops, to help develop public-facing web content to explain how data is used and shared within the NHS. In particular, to explain what federated data platforms are, how they work and what information the public might want to know about them. NHSE’s current information on federated data platforms is available here. Information about the organisation “NHS England leads the National Health Service (NHS) in England” NHS Digital Arrangement We have a formal place on the GPDPR Patient & Public Engagement and Communications Panel. At present four Advisory Group Members are in a panel pool, covering our representation (we are allowed to send one representative per panel meeting). Background The invitation to sit on the Panel follows our work from May 2021 onwards, when the Government tried to launch the General Practice Data for Planning and Research (GPDPR) programme. The lack of transparency about the launch and the programme undermined public confidence in the use of patient data for research. We worked to bring a patient voice to the situation, including hosting a public webinar and engaging directly with a wide range of stakeholders. Following the pausing of the programme, we were invited to join one of three new GPDPR Assurance Groups (the other two are the Check & Challenge Advisory Group and the Information Governance Expert Liaison Group). The panel membership is made up of patients and professional representatives from organisations with an interest in patient data. It is clearly defined as an advisory group, so has no executive or decision-making remit. The group reports upwards to the GPDPR Programme Board, a group of senior leaders from NHS Digital, NHS England and Improvement, and the Department of Health and Social Care who monitor the progress of, give direction to and take decisions in relation to the GPDPR programme. Information about the organisation “NHS Digital designs, develops and operates the national IT and data services that support clinicians at work, help patients get the best care, and use data to improve health and care.” GRAIL Arrangement use MY data and GRAIL working together to recruit use MY data Members to join a focus group to support the improvement of communications to the public about the NHS-Galleri Trial. Background GRAIL approached use MY data, seeking help to find participants for a series of workshops wherein GRAIL could obtain input/insight from patient representatives on topics relating to the Galleri Trial. This then evolved into focussing on communications work. Workshops to take place up to 3 times annually, for 2 years (2022-2023), with around 8-12 patient representatives per workshop. GRAIL is keen to have as consistent a membership as possible but appreciates that circumstances may change and that this may not always be possible. Information about the organisation “The NHS-Galleri Trial is looking into the use of a new blood test to see if it can help the NHS to detect cancer early when used alongside existing cancer screening.” A brief overview video, which gives useful background on the Trial’s aims and purpose is available here.

A trusted patient voice on patient data - organisations that we formally engage with

As a trusted patient voice on patient data, we engage with a variety of organisations. Our work is not about providing approval or endorsement, rather our Members use their lived experience to provide views on the use of patient data.

As a priority, the Secretariat always strives to ensure that our Members are reimbursed for regular engagement work. For some engagement arrangements, use MY data as an organisation receives a contributory payment, which goes towards the running of use MY data.

Current engagement work

Association of the British Pharmaceutical Industry (ABPI)

Arrangement
use MY data’s Advisory Group will operate as an ‘ideas test bed’, offering opinions and ideas on the ABPI programme without directly advising the ABPI.

Background
The Association of the British Pharmaceutical Industry (ABPI) approached use MY data to discuss the possibility of engagement work. Following discussions with the Advisory Group and joint creation of Terms of Reference (ToR), the agreement is now in place, initially running from 01 July 2022 until the end of 2023, at which point it will be reviewed. The engagement work is likely to begin this September.

From the ToR: “The purpose of the relationship is to enable the ABPI to work with use MY data’s Advisory Group to create a test bed for messaging and approach. This will inform the ABPI’s multi-year engagement programme to build public confidence in industry use of health data for research purposes.”.

While discussions will be of a confidential nature, a condition of use MY data entering into the agreement was for the arrangement and funding details to be declared publicly by use MY data and the APBI, for transparency. The ABPI agreed to this: “The ABPI respects the position of use MY data as an independent patient movement and will make public the relationship, including details of any funding provided”.

Information about the organisation
The Association of the British Pharmaceutical Industry (ABPI) represent companies of all sizes who invest in discovering the medicines of the future. The ABPI exists to make the UK the best place in the world to research, develop and use new medicines and vaccines.

NHS England (and previously NHSX)

Arrangement no.1
Contributing to the production of Information Governance materials.

Background
In 2021 NHSX (now NHSE) asked the Advisory Group to review, edit or draft sections of their updated Information Governance documents, specifically for the patient-focused sections of the documentation.

We continue to do this work on an ad-hoc basis as needed by NHS England. We do not have a formal contract for this work and have not requested any payment for our input to this important work.

Arrangement no.2
A formal place on NHS England’s Accelerating Citizen Access to their GP held-data Senior Responsible Officer (SRO) Steering Group. This work first developed under NHSX. At present two Advisory Group Members are in a panel pool, covering our representation (we are allowed to send one representative per panel meeting).

Background
use MY data was invited to sit on this Steering Group following our work, first with NHSX and then with NHS England, on patient access to patient records, including our Call to Action ‘My access to my health records’.

The purpose of the group is to provide advice on the relaunch of the NHS App, to make access to future GP health records more widely available to the public. Our representatives are now in the process of reviewing and discussing the Terms of Reference (ToR) with NHSE, as we did not receive the ToR prior to the first meeting and have requested an amendment.

The Steering Group is a closed one and meeting content will not be made public. After discussions with our Advisory Group, the Secretariat advised NHSE that as a minimum,
use MY data would need to declare our involvement with the Steering Group for transparency, first to our Membership and then on our website. We have obtained agreement that our representative on the Steering Group can provide meeting feedback to the Advisory Group. Regrettably, we are not permitted to share information more widely.

You can read a more complete update on this work here.

We continue to do this work on an ad-hoc basis as needed by NHS England. We do not have a formal contract for this work and have not requested any payment for our input to this important work.

Arrangement no.3
Contributing to the production of public-facing materials about Federated Data Platforms.

Background
In November 2023 NHSE sought the help of use MY data Members across the UK, to help develop public facing web content about Federated Data Platforms. This would be to take part in two workshops, to help develop public-facing web content to explain how data is used and shared within the NHS. In particular, to explain what federated data platforms are, how they work and what information the public might want to know about them.

NHSE’s current information on federated data platforms is available here.

Information about the organisation
“NHS England leads the National Health Service (NHS) in England”

NHS Digital

Arrangement
We have a formal place on the GPDPR Patient & Public Engagement and Communications Panel. At present four Advisory Group Members are in a panel pool, covering our representation (we are allowed to send one representative per panel meeting).

Background
The invitation to sit on the Panel follows our work from May 2021 onwards, when the Government tried to launch the General Practice Data for Planning and Research (GPDPR) programme. The lack of transparency about the launch and the programme undermined public confidence in the use of patient data for research. We worked to bring a patient voice to the situation, including hosting a public webinar and engaging directly with a wide range of stakeholders.

Following the pausing of the programme, we were invited to join one of three new GPDPR Assurance Groups (the other two are the Check & Challenge Advisory Group and the Information Governance Expert Liaison Group).

The panel membership is made up of patients and professional representatives from organisations with an interest in patient data. It is clearly defined as an advisory group, so has no executive or decision-making remit. The group reports upwards to the GPDPR Programme Board, a group of senior leaders from NHS Digital, NHS England and Improvement, and the Department of Health and Social Care who monitor the progress of, give direction to and take decisions in relation to the GPDPR programme.

Information about the organisation
“NHS Digital designs, develops and operates the national IT and data services that support clinicians at work, help patients get the best care, and use data to improve health and care.”

GRAIL

Arrangement
use MY data and GRAIL working together to recruit use MY data Members to join a focus group to support the improvement of communications to the public about the NHS-Galleri Trial.

Background
GRAIL approached use MY data, seeking help to find participants for a series of workshops wherein GRAIL could obtain input/insight from patient representatives on topics relating to the Galleri Trial. This then evolved into focussing on communications work.
Workshops to take place up to 3 times annually, for 2 years (2022-2023), with around 8-12 patient representatives per workshop. GRAIL is keen to have as consistent a membership as possible but appreciates that circumstances may change and that this may not always be possible.

Information about the organisation
“The NHS-Galleri Trial is looking into the use of a new blood test to see if it can help the NHS to detect cancer early when used alongside existing cancer screening.” A brief overview video, which gives useful background on the Trial’s aims and purpose is available here.

Our mission