use MY data

DataLoch - Engagement opportunity Dataloch is seeking new members for the Public Reference Group and, to aid this, will be hosting an information session on Tuesday, 28 March, 12:30 to 13:30, online. "We are seeking members of the public who want: to see improvements in health and social care, to work collaboratively with other group members, to ensure research has genuine public value…members of the Public Reference Group have helped to shape the delivery of the DataLoch service. As local residents, they provide broader perspectives in the use of de-identified health and social care data for research. They advise on how best to communicate with local communities. They influence the objectives…" Some key information: - Members are sought from the south-east region of Scotland, as Dataloch is a regional data service - if spaces remain, these may be offered to those beyond the south-east region - Group members will be offered "a £100 voucher every three months in recognition of time and contribution to reviewing applications as part of the Public Value Assessment (PVA) process" - Meetings are mostly online, with one in-person meeting per year from April - The work for PVA reviews is done via email. Full details and the link to registration for the information session are here. For further information and/or any questions, please contact Stuart Dunbar, Engagement Manager - s.dunbar@ed.ac.uk. Nothing about us without us - CRUK Cancer Research UK (CRUK) has published "Nothing about us without us": Why we’re working in partnership with other leading health organisations on the Shared Commitment to Public Involvement. Marking the first anniversary of the Shared Commitment, which several patient data research organisations signed up to, CRUK details their work to deliver their commitment, including how the organisation shares decision-making across its research funding. The valuable role of patients is highlighted by Terry Kavanagh, CRUK Patient Involvement Network Member and use MY data Member: "While we patients may not know the science, we do know the cancer, which I believe gives us the right to participation, engagement, and involvement in the research process. People affected by cancer must be considered as equals in the research process." The article was published on 10 March and is available here. NCRI Working/Study Groups The National Cancer Research Institute (NCRI) is seeking consumer members to represent the patient community on the NCRI Groups and their associated Working Groups/Study Groups. "Have you experienced cancer as a patient or carer and want to help shape the development of cancer research? If so, we'd like to hear from you…The NCRI is committed to working to advance cancer research with input from cancer patients and carers. We ensure that the patient voice is not just represented, but has a clear purpose and genuine value across all NCRI activities, shaping actions at a national level." The deadline to apply is midnight on Sunday, 26 March. Can health data really save lives? The National Institute for Health and Care Research (NIHR) Cambridge Biomedical Research Centre (BRC) is hosting Can health data really save lives? on Thursday, 23 March, 19:00 to 20:30, online. "Health data has the potential to drive research leading to improved treatment and diagnosis of illness – but that data ultimately comes from patients, who may have questions and concerns about its use. So how can researchers work with patients and the public to co-create boundaries and priorities that allow the use of patient data to save and improve lives in a socially acceptable way?" Speakers include Dr Raj Jena who works with patients "to create tools for improving cancer diagnosis and care using health data from cancer scans and other treatment information". Raj has previously, and very helpfully, engaged with use MY data on this topic. The webinar is part of the Cambridge Festival and free to attend. Scotland: first Data Strategy Scotland's first Data Strategy for Health and Social Care published The Scottish Government has published Scotland's first Data Strategy for Health and Social Care. The strategy aims to "improve the care and wellbeing of people in Scotland by making best use of data in the design and delivery of services, and includes supporting research and innovation as a priority action area". The strategy was published on 22 February. Data sharing during coronavirus: lessons for Gover The Institute for Government (IfG) has published the final report in its series Data sharing during coronavirus: lessons for Government. use MY data took part in one of the roundtables that fed into the report. Included within the report is the observation: "At multiple roundtables, participants suggested there was a growing need to consider the risk of not sharing data – a concept raised elsewhere by figures including John Edwards, the information commissioner, and the National Data Guardian…" The report was published on 20 February Wales: SAIL Report Impact of COVID-19 pandemic on incidence of long-term conditions in Wales The (Secure Anonymised Information Linkage) SAIL Databank has published Impact of COVID-19 pandemic on incidence of long-term conditions in Wales. Researchers "conducted a population data linkage study using primary and secondary care data" which uncovered "a potential backlog of undiagnosed patients with multiple long-term conditions in Wales requiring resources to tackle anticipated workload as part of COVID-19 recovery, particularly in primary care". The research was published on 07 March use MY data response to BMJ Our response to the BMJ article "GP surgery withdraws from kidney screening pilot" Paper on citizen access to patient records On the topic of patients accessing their own GP record, the British Journal of General Practice has published Putting principles into practice: A qualitative exploration of the views and experiences of primary care staff regarding patients having online access to their electronic health record, with one of the authors Dr Brian McMillan, Centre for Primary Care and Health Services Research, University of Manchester and use MY data Associate Member. The authors "examine the views and experiences of primary care staff regarding patients having online access to their primary care health record, and how this service could be supported and improved". "Most staff agreed with the principle of patient access to online health records but had mixed feelings regarding the potential benefits and drawbacks of applying this in practice… This underlines the need for additional staff training and support to expand capability and capacity to adapt practice and enhance patient engagement with, and understanding of, their health records." The paper was published on 09 February. SAIL Databank Research Estimating mental health service use in children and young people from Welsh Gypsy and Traveller communities UK Parliament Report Evaluation of Government commitments made on the digitisation of the NHS The UK Parliament has published Evaluation of Government commitments made on the digitisation of the NHS. This is a mid-term 'report card' which evaluates the delivery of digitisation across the NHS, and provides an assessment on progress on several commitments, marked as red, amber or green, following discussions with stakeholders, comprising "health and social care professionals, patients, researchers, people in receipt of social care and advocates to roundtable events". Several areas relate to direct areas of interest for use MY data’s Members, in particular that "a patient representative in our stakeholder roundtable discussions described how poor communication erodes trust but also erodes the quality of data collected, thus eroding the benefits data can bring to patients…Once you lose trust, you've lost the whole thing." The report was published on 17 February Seeking Members views Members views are needed on new Draft guidance on NHS England's protection of patient data. Published by the Department of Health & Social Care, in relation to NHS Digital moving into NHS England (NHSE), this is significant guidance, marked as 'Statutory' but published as draft. Our Expert Data Adviser, Chris, contacted NHS England seeking clarity about the guidance’s status and was advised that, while NHSE is not hosting a public consultation, use MY data would be welcome to send feedback Make it Public Week The Health Research Authority (HRA) is hosting Make it Public Week - “the UK's first ever dedicated research transparency week”. This will run from Monday, 20 March to Friday, 24 March, to “bring the research community together to share best practice in research transparency”. The events are free to attend. Northern Ireland Cancer Registry Official statistics, created using routinely collected patient data, “on all cancers diagnosed in Northern Ireland during 1993-2020” The release includes “incidence, survival trends, prevalence and mortality as well as COVID-19 impact reports for each cancer site”. The statistics were published on 09 February GP Data Trust report The University of Manchester has worked with the Patients Association to publish General Practice Data Trust (GPDT) Pilot Study: Report on Patient Focus Groups. This is the next stage of work to build trust in the use of GP data for research, via a GPDT, following the attempted launch of the General Practice Data for Planning & Research (GPDPR) and the corresponding large number of patient data opt-outs. “…patients’ concerns also point the way to possible solutions, and the discussion affirmed that improvement to the NHS’s data approach in several key areas would reassure patients considerably. The most prominent of these were: Greater transparency, with much more information presented (in a readily accessible and understandable manner) about would happen, and had happened, to a patient’s data, including information about the specific work items it has been used in…” Westminster Health Forum opportunity An opportunity for a use MY data Member to join the panel - contact alison@usemydata.org.uk Westminster Health Forum is hosting Utilising data to drive health and social care service developments and there is an opportunity for a use MY data Member to join the panel alongside our Expert Data Adviser, Chris. The event will take place on Monday, 08 June, 09:00 to 13:30, online. We will take part in the session Building public engagement and trust in data use - improving understanding of data collection, enabling access to care and treatment records, and placing patient safety at the heart of strategies for data use. This runs from 10:00 to 11:00, with each speaker having a maximum speaking time of five minutes, followed by 30 minutes of panel questions and answers. If you are interested in representing use MY data, please let me know by the end of Sunday, 19 February – alison@usemydata.org.uk. Thank you and please do let me know if you have any questions.

DataLoch - Engagement opportunity

Dataloch is seeking new members for the Public Reference Group and, to aid this, will be hosting an information session on Tuesday, 28 March, 12:30 to 13:30, online. "We are seeking members of the public who want: to see improvements in health and social care, to work collaboratively with other group members, to ensure research has genuine public value…members of the Public Reference Group have helped to shape the delivery of the DataLoch service. As local residents, they provide broader perspectives in the use of de-identified health and social care data for research. They advise on how best to communicate with local communities. They influence the objectives…" Some key information: - Members are sought from the south-east region of Scotland, as Dataloch is a regional data service - if spaces remain, these may be offered to those beyond the south-east region - Group members will be offered "a £100 voucher every three months in recognition of time and contribution to reviewing applications as part of the Public Value Assessment (PVA) process" - Meetings are mostly online, with one in-person meeting per year from April - The work for PVA reviews is done via email. Full details and the link to registration for the information session are here. For further information and/or any questions, please contact Stuart Dunbar, Engagement Manager - s.dunbar@ed.ac.uk.
Nothing about us without us - CRUK

Cancer Research UK (CRUK) has published "Nothing about us without us": Why we’re working in partnership with other leading health organisations on the Shared Commitment to Public Involvement. Marking the first anniversary of the Shared Commitment, which several patient data research organisations signed up to, CRUK details their work to deliver their commitment, including how the organisation shares decision-making across its research funding. The valuable role of patients is highlighted by Terry Kavanagh, CRUK Patient Involvement Network Member and use MY data Member: "While we patients may not know the science, we do know the cancer, which I believe gives us the right to participation, engagement, and involvement in the research process. People affected by cancer must be considered as equals in the research process." The article was published on 10 March and is available here.
NCRI Working/Study Groups

The National Cancer Research Institute (NCRI) is seeking consumer members to represent the patient community on the NCRI Groups and their associated Working Groups/Study Groups. "Have you experienced cancer as a patient or carer and want to help shape the development of cancer research? If so, we'd like to hear from you…The NCRI is committed to working to advance cancer research with input from cancer patients and carers. We ensure that the patient voice is not just represented, but has a clear purpose and genuine value across all NCRI activities, shaping actions at a national level." The deadline to apply is midnight on Sunday, 26 March.
Can health data really save lives?

The National Institute for Health and Care Research (NIHR) Cambridge Biomedical Research Centre (BRC) is hosting Can health data really save lives? on Thursday, 23 March, 19:00 to 20:30, online. "Health data has the potential to drive research leading to improved treatment and diagnosis of illness – but that data ultimately comes from patients, who may have questions and concerns about its use. So how can researchers work with patients and the public to co-create boundaries and priorities that allow the use of patient data to save and improve lives in a socially acceptable way?" Speakers include Dr Raj Jena who works with patients "to create tools for improving cancer diagnosis and care using health data from cancer scans and other treatment information". Raj has previously, and very helpfully, engaged with use MY data on this topic. The webinar is part of the Cambridge Festival and free to attend.
Scotland: first Data Strategy

Scotland's first Data Strategy for Health and Social Care published The Scottish Government has published Scotland's first Data Strategy for Health and Social Care. The strategy aims to "improve the care and wellbeing of people in Scotland by making best use of data in the design and delivery of services, and includes supporting research and innovation as a priority action area". The strategy was published on 22 February.
Data sharing during coronavirus: lessons for Gover

The Institute for Government (IfG) has published the final report in its series Data sharing during coronavirus: lessons for Government. use MY data took part in one of the roundtables that fed into the report. Included within the report is the observation: "At multiple roundtables, participants suggested there was a growing need to consider the risk of not sharing data – a concept raised elsewhere by figures including John Edwards, the information commissioner, and the National Data Guardian…" The report was published on 20 February
Wales: SAIL Report

Impact of COVID-19 pandemic on incidence of long-term conditions in Wales The (Secure Anonymised Information Linkage) SAIL Databank has published Impact of COVID-19 pandemic on incidence of long-term conditions in Wales. Researchers "conducted a population data linkage study using primary and secondary care data" which uncovered "a potential backlog of undiagnosed patients with multiple long-term conditions in Wales requiring resources to tackle anticipated workload as part of COVID-19 recovery, particularly in primary care". The research was published on 07 March
use MY data response to BMJ

Our response to the BMJ article "GP surgery withdraws from kidney screening pilot"
Paper on citizen access to patient records

On the topic of patients accessing their own GP record, the British Journal of General Practice has published Putting principles into practice: A qualitative exploration of the views and experiences of primary care staff regarding patients having online access to their electronic health record, with one of the authors Dr Brian McMillan, Centre for Primary Care and Health Services Research, University of Manchester and use MY data Associate Member. The authors "examine the views and experiences of primary care staff regarding patients having online access to their primary care health record, and how this service could be supported and improved". "Most staff agreed with the principle of patient access to online health records but had mixed feelings regarding the potential benefits and drawbacks of applying this in practice… This underlines the need for additional staff training and support to expand capability and capacity to adapt practice and enhance patient engagement with, and understanding of, their health records." The paper was published on 09 February.
SAIL Databank Research

Estimating mental health service use in children and young people from Welsh Gypsy and Traveller communities
UK Parliament Report

Evaluation of Government commitments made on the digitisation of the NHS The UK Parliament has published Evaluation of Government commitments made on the digitisation of the NHS. This is a mid-term 'report card' which evaluates the delivery of digitisation across the NHS, and provides an assessment on progress on several commitments, marked as red, amber or green, following discussions with stakeholders, comprising "health and social care professionals, patients, researchers, people in receipt of social care and advocates to roundtable events". Several areas relate to direct areas of interest for use MY data’s Members, in particular that "a patient representative in our stakeholder roundtable discussions described how poor communication erodes trust but also erodes the quality of data collected, thus eroding the benefits data can bring to patients…Once you lose trust, you've lost the whole thing." The report was published on 17 February
Seeking Members views

Members views are needed on new Draft guidance on NHS England's protection of patient data. Published by the Department of Health & Social Care, in relation to NHS Digital moving into NHS England (NHSE), this is significant guidance, marked as 'Statutory' but published as draft. Our Expert Data Adviser, Chris, contacted NHS England seeking clarity about the guidance’s status and was advised that, while NHSE is not hosting a public consultation, use MY data would be welcome to send feedback
Make it Public Week

The Health Research Authority (HRA) is hosting Make it Public Week - “the UK's first ever dedicated research transparency week”. This will run from Monday, 20 March to Friday, 24 March, to “bring the research community together to share best practice in research transparency”. The events are free to attend.
Northern Ireland Cancer Registry

Official statistics, created using routinely collected patient data, “on all cancers diagnosed in Northern Ireland during 1993-2020” The release includes “incidence, survival trends, prevalence and mortality as well as COVID-19 impact reports for each cancer site”. The statistics were published on 09 February
GP Data Trust report

The University of Manchester has worked with the Patients Association to publish General Practice Data Trust (GPDT) Pilot Study: Report on Patient Focus Groups. This is the next stage of work to build trust in the use of GP data for research, via a GPDT, following the attempted launch of the General Practice Data for Planning & Research (GPDPR) and the corresponding large number of patient data opt-outs. “…patients’ concerns also point the way to possible solutions, and the discussion affirmed that improvement to the NHS’s data approach in several key areas would reassure patients considerably. The most prominent of these were: Greater transparency, with much more information presented (in a readily accessible and understandable manner) about would happen, and had happened, to a patient’s data, including information about the specific work items it has been used in…”
Westminster Health Forum opportunity

An opportunity for a use MY data Member to join the panel - contact alison@usemydata.org.uk Westminster Health Forum is hosting Utilising data to drive health and social care service developments and there is an opportunity for a use MY data Member to join the panel alongside our Expert Data Adviser, Chris. The event will take place on Monday, 08 June, 09:00 to 13:30, online. We will take part in the session Building public engagement and trust in data use - improving understanding of data collection, enabling access to care and treatment records, and placing patient safety at the heart of strategies for data use. This runs from 10:00 to 11:00, with each speaker having a maximum speaking time of five minutes, followed by 30 minutes of panel questions and answers. If you are interested in representing use MY data, please let me know by the end of Sunday, 19 February – alison@usemydata.org.uk. Thank you and please do let me know if you have any questions.

Our mission

DataLoch - Engagement opportunity

Nothing about us without us - CRUK

NCRI Working/Study Groups

Can health data really save lives?

Scotland: first Data Strategy

Data sharing during coronavirus: lessons for Gover

Wales: SAIL Report

use MY data response to BMJ

Paper on citizen access to patient records

SAIL Databank Research

UK Parliament Report

Seeking Members views

Make it Public Week

Northern Ireland Cancer Registry

GP Data Trust report

Westminster Health Forum opportunity