Full list of Patient Data News items

Federated Data Platform: “NHS to fill in the blanks on Palantir’s heavily redacted contract”

7 Mar 2024

The Good Law Project reports that in response to its legal challenge “NHS England has committed to publish a new version of Palantir’s contract with ‘fewer redactions’ . . .

Provisions on the protection of personal data – a crucial part of a contract that deals with millions of sensitive medical records – ‘will no longer be redacted’ ”.

Read more

 

Public back ‘patient passports’ to share medical records with any doctor

8 Feb 2024

Hot on the heels of a paper from the Tony Blair Institute for Global Change advocating personal health accounts to empower individuals 'with direct access to their data and ownership over it', comes a new report from The Times Health Commission calling for digital health accounts (or ‘patient passports’).

“Eight in ten people support the creation of ‘patient passports’ that would provide a single system to keep track of medical records throughout a person’s life, and which could be accessed seamlessly across GPs, NHS hospitals, pharmacies and social care.

The proposal is the first of ten key recommendations in the Times Health Commission Report, which is being published following a year-long inquiry and amid widespread backing for a data revolution in healthcare.

The commission, led by a panel of experts from across health and social care, spoke to more than 600 witnesses including senior doctors, hospital managers and politicians.”

Read the report in full

Online patient access to medical records will boost workload and litigation, GPs fear

8 Feb 2024

The Shropshire Star picked up a story from BMJ Open that GPs are sceptical about giving patients access to their medical records.

According to BMJ Open, “A significant proportion did agree that there would be benefits for patients. Among the 400 GPs who responded to the survey, 7 out of 10 (70%; 280) agreed that patients would better remember their care plan, while 6 out of 10 respondents believed that access would help patients feel more in control of their care (60%; 243).

But most (91%; 364) felt that patients would worry more as a result, or find their GP records more confusing than helpful (85%; 338). And 6 in 10 (60%; 240) believed that most patients would find significant errors in their records.”

A New National Purpose: Leading the Biotech Revolution

1 Feb 2024

Writing in The Times last week, Tony Blair and William Hague called on the NHS to create a public private partnership in the form of an NHS Data Trust. Their article promoted the ideas set out in a new report from the Tony Blair Institute for Global Change.

The wide ranging report calls for a new approach to using healthcare data to support medical breakthroughs, harnessing the masses of anonymised patient data held by the NHS, including:

An NHS Data Trust

“A new NHS Data Trust (NHSDT) to capitalise on the opportunities of health data. Owned and controlled by the NHS in collaboration with trusted external partners, the NHSDT would treat NHS data as a competitive asset whose value can be realised for the benefit of the public. This would involve providing anonymised data to research entities, including biotech companies, in return for financial profit that would then benefit our health service. A transparent governance model would ensure that our data remain safe and that NHSDT’s operations align with public-health objectives, not private capital’s.”

Access to health records

“The public’s lack of access to health records is another foundational aspect of its trust deficit. People currently have limited access to, and authority over, their own health data. As the UK moves towards a more secure and improved data-access model for researchers and health-care providers, it should also transition to a progressive model in which individuals, rather than playing a passive role, are empowered with direct access to their data and ownership over it.

On this particular topic the report aligns with use MY data’s Position Statements on access to our health records:

CALL TO ACTION - My access to my health records

Realising the benefits of a truly National Health Record

 

How the story was reported elsewhere in the media:

Morning Star, Daily Mail, BMJ, Digital Health

Rare diseases patient self-registration Have you self-registered your rare disease?

25 Jan 2024

Dr Jennifer Jones a Research Associate with Genetic Alliance UK and an Associate Member of use MY data has let the Secretariat know that for the rare disease and rare congenital anomaly registers there is now the option to self-register.   These disease registers sit within the National Disease Registration Service (NDRS) who state “In addition to NDRS collecting data at source, you can also request for your information to be included on the rare disease register”. 

 

If any use MY data Members have used this self-registration system to register a rare disease, Dr Jones would welcome hearing about your experience.

Please email her at  jennifer.jones@geneticalliance.org.uk  

Patient access to health records - your experience

18 Jan 2024

The British Medical Journal’s (BMJ) Patient Advisory Group has designed a brief questionnaire to learn about patient access to health records.

“We would like to learn more about how easy or difficult it is for people in different countries to access their electronic health records.”  

“We hope to use the results as the basis of articles on patient access to health records for submission to the BMJ and we would be delighted if you were willing to help us in this way.” You can complete the survey here.

AI in healthcare: learning from success stories

3 Aug 2023

The Academy of Medical Sciences has published a report on its engagement work around using AI in healthcare - AI in healthcare: learning from success stories. use MY data Members Debbie Keatley, Sarah Markham and John Marsh took part in the work, participating in “discussions around next steps to accelerate adoption of AI into health care”. “Artificial intelligence-based healthcare technologies have great potential to transform health outcomes and the UK’s healthcare system. However, there are currently barriers to their adoption and scale-up. It’s time to learn from the technologies that have overcome these challenges and harness the full potential of AI in healthcare. Our FORUM workshop in March, held in partnership with the Royal Academy of Engineering, looked at accelerating safe and effective adoption of artificial intelligence in the healthcare system. We brought together representatives from academia, industry and the health and social care sectors, along with patients and regulators. They discussed what lessons can be learnt from the AI technologies already in use in healthcare…” The report, along with an executive summary with next steps, was published on 28 July here.

Navigating Digital health: A guide to data and art

3 Aug 2023

A team at Imperial College London has published the useful summary guide - Navigating Digital health: A guide to data and artificial intelligence in healthcare focussing on how “Artificial intelligence is starting to help organise and deliver healthcare”. The guide aims to “help everyone understand more about data and artificial intelligence. We want each and every person to have the confidence to make choices that are right for them about their data and its use in healthcare”. “In the Department of Surgery and Cancer, we involve patients and the public in all stages of our research. We noticed that more and more researchers were bringing research projects involving data science and artificial intelligence to the patient and public involvement group, yet the group felt they did not have adequate knowledge of this field to contribute to the research in meaningful ways. So, we decided to design a guide to data and AI for the public, by the public. This would be a free educational resource for everyone, to encourage informed patient and public involvement in research projects and the development of apps and devices that patients would want to use to support their health.” The guide was published on 04 July and is available here. One of our Educational Sessions is on this same theme – Artificial Intelligence and Machine Learning – an introduction - and is available in our Members Learning area.

Help shape health data research in Cambridge

3 Aug 2023

The National Institute for Health and Care Research (NIHR) Cambridge Biomedical Research Centre (BRC) is hosting Help shape health data research in Cambridge on Tuesday, 29 August, 18:30 to 20:00, online. “Medical records contain a wealth of health data including tests, diagnoses, treatments, and outcomes. These data can be used in cutting edge health data research including modelling more efficient planning of services, identifying new treatments that work for specific patient groups or training AI models to help clinicians diagnosis illness faster. These innovations can ultimately help to improve services and transform the care that patients receive. It is vital that researchers work with patients and the public to ensure that health data are used in ways that protect privacy and that patients are comfortable with. CUH [Cambridge University Hospitals] have established the Electronic Patient Record Research and innovation (ERIN) database and will be setting up a patient panel to review applications from researchers for data; information on how you can get involved in and start shaping health data research will be provided at the event…” The event is free to attend and open to all. Details and registration are available here.

Patient Public Involvement in Research Using Admin

27 Jul 2023

In a new blog Patient Public Involvement in Research Using Administrative Data, Elizabeth Lemmon outlines the benefits of using administrative data (which includes NHS data), of involving the public and patients within this and of her own experiences as a researcher and patient. Elizabeth leads Early Career Researchers Using Scotland Administrative Data (eCRUSADers) and is a use MY data Associate Member. “This post is Part One of a two part post on Public and Patient Involvement (PPI) in research using administrative data. In this part, we discuss PPI, think about why it is important and I will convince you why it will benefit your research. Before we get started, I just wanted to give you an overview of my journey through PPI and set the scene that motivated this post…For me, PPI is a continuous conversation with those whose data we are using, to understand specific disease or service areas, ultimately with a view to improving their lives in a meaningful way.”

Wales - Research framework

27 Jul 2023

Health and Care Research Wales has published its new Framework to embed and integrate research in the NHS. The Framework is a “drive to embed and integrate research into all aspects of health and care services in NHS Wales…Improving health and care services in Wales using evidence-based approaches is fundamental to improving the quality of care and putting the public at the heart of everything. It is widely known that research makes a real difference to improving health outcomes and to the lives of patients and people in our communities…This Framework will be a key driver to keep research high on the agenda within the NHS and reinforce the role it plays in day-to-day care”.

National Cancer Patient Experience Survey

27 Jul 2023

Results from the 2022 National Cancer Patient Experience Survey (CPES), have recently been published, using data collected to measure patient experience and thereby improve future patient experiences. “This feedback is used to understand where care is working well and how NHS cancer services across England can be improved. Results from the survey are used by providers to improve the experience of cancer patients at a national, regional, and local level.” Historically the survey has always had a high response rate from patients and the 2022 survey received over 61,000 responses (a response rate of 53%). This year a free online dashboard has been published, allowing the results to be shown nationally, by Cancer Alliance, Integrated Care Board or NHS Trust.

My Parkinsons data - at last!

27 Jul 2023

As part of his Always On series Rory Cellan-Jones, independent journalist, has published My Parkinsons data - at last! The data is a result of using personal monitoring equipment supplied by a technology company. "For more than four years now I have been on a quest…it is data I have been seeking - hard numbers about my Parkinsons. How severe are my symptoms, do they vary throughout the day, do they respond to the medication I take?"

Comics for research

13 Jul 2023

UCL (University College London) Great Ormond Street Institute of Child Health is hosting Comics for research, an in-person workshop for young people on Saturday, 26 August from 14:00 to 17:00, London This workshop is aimed at young persons age 11 to 17 years who are interested in writing or illustrating a comic strip. In this workshop we will discuss the results of one research project and summarise them in a comic strip…You do not have to have any skills in writing or drawing, just your imagination and we can work together to make a great comic that helps others understand the research project better. The workshop is free to attend. Full details and registration are available here.

CRUK Trusted Research Programme

13 Jul 2023

Cancer Research UK has announced details of its new Trusted research programme and of how the programme can help external researchers access patient data in a timely manner. "Through our research data strategy, we’re aiming to unleash the potential of data-driven research to improve our understanding of cancer and create better outcomes for patients. Our new trusted research programme supports this by helping to maximise the safe and effective collection and reuse of cancer related data. We’re offering support for researchers dealing with sensitive health and related data, including anyone harnessing the latest approaches in machine learning and artificial intelligence, 'omics' and population scale data processing…" The announcement was made on 10 July with details here.

DARE UK Event

6 Jul 2023

Breaking Barriers, Building Community: Exploring DARE UK Community Groups on Thursday, 20 July, 12:00 to 13:00. Dare UK will host the webinar Breaking Barriers, Building Community: Exploring DARE UK Community Groups on Thursday, 20 July, 12:00 to 13:00. “Join like-minded people and the DARE UK team to discover how we’re building communities to support UK-wide sensitive data research. In this webinar led by the DARE UK programme team, we will cover a range of topics to provide you with a clearer understanding of the DARE UK Community Groups initiative…” This event is free and open to everyone to attend.” The webinar is free to attend. Full details and registration are available here

Government mandate to NHS England

5 Jul 2023

The Department of Health & Social Care (DHSC) has published the government 2023 mandate to NHS England. The Secretary of State has laid out a very limited number of priorities: - Priority 1: cut NHS waiting lists and recover performance - Priority 2: support the workforce through training, retention and modernising the way staff work - Priority 3: deliver recovery through the use of data and technology. It is the third priority which is of course of particular interest to use MY data - "Optimising the use of health and social care data to deliver better services and outcomes for patients, maintaining the highest standards of data protection and ensuring cyber resilience to maintain and build public trust in our protection of people’s data". The focus on data is positive, but whilst the "the highest standards of data protection and ensuring cyber resilience" are important to build trust, the document does not highlight the need to develop a wider public understanding of how we see benefits from health data, as its focus is on reducing risk through protection. A strong public conversation about the benefits of using data, is needed, rather than a solitary focus on risk. This will be an area for our new Comms & Media Lead to work on with our Members. The mandate was published on 15 June and is available here.

National Cancer Research Institute closing

5 Jul 2023

In news that will have a major impact on staff, patients and research, the National Cancer Research Institute (NCRI) has announced that it will be closing and ceasing all operations on 14 July, then winding down over the three to six months beyond that. The announcement was made on 26 June and is available here.

GP Data Trust pilot Video

5 Jul 2023

The General Practice Data Trust pilot "aims to explore how to give back control of their data to people who have opted out of NHS Digital’s General Practice Data for Planning and Research (GPDPR) programme and provide an opportunity to participate in life saving research". The pilot has now created a video as an introduction and with details of the technical side of how the Trust "could ensure health data is shared in line with patients' wishes". The video was published on 28 June and is available here.

SAIL Databank

5 Jul 2023

How the sequence of disease acquisition affects life expectancy The SAIL Databank (Secure Anonymised Information Linkage) has led on groundbreaking research that examines how the sequence of disease acquisition affects life expectancy. The research was made possible through using the routinely collected patient data that is stored in the Databank. "…these models could be used to help inform patients, clinicians, and healthcare decision-makers on the appropriate identification and management of patient care, leading to improved patient outcomes and healthcare cost reductions…" The research was published on 30 June and is available here.

SAIL Databank User Forum

22 Jun 2023

The SAIL Databank (Secure Anonymised Information Linkage) is hosting a SAIL Databank User Forum on Thursday, 20 July from 10:00 to 12:00. “This event is open to all users of the SAIL Databank platform as well as members of the public. The User Forum is a great opportunity to hear from guest speakers about the research they're undertaking and to get all the latest information about SAIL's developments across IT infrastructure, analytical software, data resources, public engagement, marketing and other developments here at SAIL.” The event is free to attend. Details and registration are here.

Health Index for England published

22 Jun 2023

The Office for National Statistics (ONS) has published a Health Index for England covering 2015 to 2021 looking at three domains of health: Healthy People, Healthy Lives and Healthy Places. A new interactive online tool accompanies the publication. The accompanying interactive online tool contains all of the Index data and shows how health changed in each local authority area across England between 2015 and 2021. The tool is available here.

PEDRI Anniversary event

15 Jun 2023

The Public Engagement in Data Research Initiative (PEDRI) is hosting a First year anniversary event on Wednesday, 21 June, 15:30 to 18:00, online and in-person in London. Alongside an anniversary celebration, the event will showcase work to date and future plans. It is “open to all those with an investment in public involvement and engagement in data research and statistics”. The event is free to attend. Details and registration are available are available here. .

Health Disparities

8 Jun 2023

Health Disparities: Why Medical Research is a crucial tool for change is a report by the All-Party Parliamentary Group (APPG) on Medical Research, which highlight the role of medical research and data in addressing health disparities, focussing on understanding and improving inclusion in clinical research. “A recent Wellcome-funded Race Equality Foundation project explored the views of Black, Asian and minority ethnic people, including healthcare professionals, to understand barriers to recording data on ethnicity. A lack of understanding of why ethnicity data is being asked for, accompanied by fears of racial discrimination, was found to be a key barrier to participants’ willingness to provide data.” “Researchers should be supported to transparently and securely collect data on diversity, to record it using consistent metrics and to report compete and aggregated datasets”. The report was published on 05 June and is available here.

Consultation on data access

8 Jun 2023

The Department of Health & Social Care (DHSC) has published Data access policy update: proposed draft for open consultation. The policy relates to the commitment to move to a system of “data access as default” for the secondary uses of NHS data, which will be supported by the implementation of secure data environments across the NHS in England. The draft policy was published on 26 May here. The consultation is open until 23:45, Friday, 23 June.

Review on unifying health data

8 Jun 2023

The UK Government has commissioned the independent review Unifying Health Data in the UK, seeking views “on current issues in health data including current infrastructure, hurdles and possible solutions”. Led by Professor Cathie Sudlow, the review will “map and assess the flows of health-relevant data across the four nations of the UK. It will evaluate how data can be better managed to improve public health while maintaining privacy and trust…” “Population-level health data has the potential to transform research and public health, and the UK is in a unique position thanks to the NHS and its cradle-to-grave records for a population of over 65 million people. This was shown during the COVID-19 pandemic, where rapid, secure and efficient linkage of data…allowed policy decisions to be made quickly around crucial issues…Understanding how to maintain these positive changes…is at the core of the review…” Details are here and the review is open until 17:00, Friday, 30 June.

Consultation on data standards

8 Jun 2023

The Public Engagement in Data Research Initiative (PEDRI) has launched PEDRI: Public Involvement and Engagement Best Practice Draft Standards for the use of data for Research and Statistics. “These standards are the culmination of nine months of work from the PEDRI Best Standards Working group. The standards have been drafted with input from a scoping of existing public involvement and engagements standards, public workshops, and wider consultation with members of the public involvement and engagement community. While we are proud of the work done to develop these draft standards, it is not the end point of their development. Now we would like to hear from you…” Details are here and the consultation is open until Friday, 30 June.

Statutory Guidance

25 May 2023

The Department of Health and Social Care (DHSC) has published Statutory Guidance on NHS England’s protection of patient data. use MY data submitted a response to the draft guidance, using the collated views of Members. DHSC received our response with gratitude and have supplied follow-up information for our Members – please find this attached. The DHSC is keen to maintain a direct dialogue with use MY data Members. The first step of this will be an educational session, focusing on the guidance and giving Members the opportunity to ask questions of the DHSC direct. This will take place in July and the Secretariat is liaising with the DHSC to confirm the date. The guidance was published on 23 May and is available here.

Genetic Alliance UK

25 May 2023

Genetic Alliance UK is seeking four new trustees for its Board, to “play a key role in leading and supporting the charity” which has a new strategic focus on “working together to improving “improve the lives of 3.5 million people in the UK affected by rare or genetic conditions”. Some key information: - Honoraria are not offered / necessary, reasonable expenses will be covered - Meetings are a mixture of online and in-person (location not specified) - “People from minority ethnic backgrounds and men are currently under-represented on the Board, and we would love to hear from applicants who can bring these perspectives to our work.” - “We want to hear from candidates from all walks of life, and we welcome applications from people with lived experience of rare or genetic conditions either directly or through a family member”. Full details, including the mix of skills sought, are available here. Closing date: 17:00, Monday 12 June.

BHF Data Science Centre

25 May 2023

The BHF (British Heart Foundation) Data Science Centre has launched the survey Have your say! Can you help develop a smartphone app to track heart health? “Researchers at the British Heart Foundation (BHF) Data Science Centre are seeking public views to help design a new app that could better study how activity levels vary with changing heart health. The research team at the BHF Data Science Centre hope that a new app could give valuable insights into why heart and circulatory diseases develop and enable earlier diagnoses of these conditions…they are seeking your opinion about what data to collect, and any concerns about aspects such as privacy…Everyone, regardless of their background or lifestyle, is welcome to participate in sharing their views.” The survey will take about 10 minutes to complete and is available here. Closing date: Friday, 30 June.

Your Data in Action

11 May 2023

PEDRI - Public Engagement in Data Research Initiative – brings organisations together to standardise their work across patient and public involvement and engagement. On 05 May, PEDRI has launched its pilot campaign Your Data in Action, which is aimed at new families. “Informed by focus groups and insights gathered from the public, Your Data in Action aims to raise awareness of how data for research can make a difference to parents and their children. This pilot campaign is targeted at parents in Barking and Dagenham and North Tyneside, and will inform the roll-out of future national campaigns…” “Research that’s conducted by using data can improve the lives of families across the UK. When it’s used responsibly it can lead to better healthcare, education, and more, to benefit you and your children. Interested in learning more about data? Keep reading to find out about some ways data is used, how it could impact future families, and how you can get involved to shape future research…” Full details, published on Health Data Research UK’s website, are available here.

National Disease Registration Service

4 May 2023

The National Disease Registration Service (NDRS) has published its Strategic plan, April 2023-March 2024. The plan covers data collected "on every patient diagnosed with a cancer, pre-cancer or with a congenital anomaly, as well as data on over 1800 rare diseases", which will be "used as actionable evidence to improve population health, service provision, patient outcomes and support research". The strategy was published on 14 April and is available here.

Data access blog - Scotland

4 May 2023

The blog Why public sector data needs to be transformed by Nora Cooke O'Dowd, Programmes and Data Acquisition Director, Research Data Scotland (RDS), follows RDS's recent Public Sector Data Summit and highlights the difficulties in data access for research in Scotland and the RDS's role in addressing this. "The system of making data available for research is very well established in Scotland, but it is fragmented…Scotland already has excellent data on people, places and business, but barriers to accessing this data quickly and safely can delay valuable research…it takes on average 6 to 24 months to access public sector data for research. The data is sensitive, so it’s right that there are appropriate checks and balances in place…but the application process at present is more laborious and repetitive than it needs to be." The role of RDS is "to act as an independent organisation, who can listen to all parties and suggest recommendations. We have a remit to provide systems leadership in bringing data organisations, universities, researchers, and public bodies from across the data landscape together, to work as a single system and transform the way data is managed". The blog was published on 24 April and is available here.

PPV role for Rare Diseases

28 Apr 2023

NHS England's Specialised Commissioning Engagement Team is seeking a Patient and Public Voice (PPV) Partner to fill one of four PPV roles on the Rare Diseases Advisory Group (RDAG). NHS England is seeking "people who have an interest in or are knowledgeable about rare diseases and conditions". Some key information: - The RDAG meets online, approximately four times per year, with meetings four-hours long - An honorarium is offered - £75 per half-day or £150 per full-day, which includes preparation work. The closing date for application is Wednesday, 07 May with interviews on Thursday, 08 June. The application information pack is available here and information about the RDAG here. For an informal chat and/or to obtain further information, please email england.voice-crg@nhs.net.

Understanding Patient Data new team

28 Apr 2023

Understanding Patient Data (UPD) has publicised information about its new phase with new team. "UPD's success lies in its focus on supporting the health community, and in the support that it receives in return. The team will be actively seeking stakeholders’ input in the development of each UPD project to ensure that we provide the community with the research, resources and representation they need to make the way patient data is used more trustworthy." There are three workstreams: - health data policy - data transformation - population health management and use. Full details, published on 17 April, are available here. Chris, our Expert Data Adviser, has been given a place on UPD's Board, to represent use MY data. As soon as meetings are up and running, Chris will be in touch to liaise with you/update you.

Federated Architecture Blueprint

28 Apr 2023

DARE UK consultation: Federated Architecture Blueprint for sensitive data research "DARE UK is pleased to share the initial draft architecture blueprint for this proposed federated network of TREs [Trusted Research Environments] for public review and comment. This marks the first step in a series of consultations that will continue in the future." The document describes a proposed technical research environment which would bring together administrative, health and other data. We learned that there will workshops on the proposal later this year and we’ll look out for these, in order to share details with you. The consultation is "for public review and comments". The document and consultation survey are available here

National Disease Registration Service

6 Apr 2023

Spring webinar series focussing on different aspects of the patient data that the NDRS holds. The webinars include “a closer look at some of the datasets, our work on congenital anomalies and rare diseases and highlighting recent partnerships...” The webinars are free to attend

Public dialogue on using health data

6 Apr 2023

Scottish Government – Public dialogue on using health data Our Expert Data Adviser, Chris Carrigan, was invited to take part in a public consultation workshop about the use of health data, led by Dr Michaela Omelkova, Ethics Director for the Scottish Government. The workshop took place on the evening of Thursday, 30 March and was organised by IPSOS Scotland. The workshop, with a Public Engagement Panel, was the latest in a wider series of workshops to explore views on private sector access and use of personal data held by the Scottish public sector. Chris gave a short presentation about use MY data - what we do, our impact and our work around sharing patient data with private organisations for public benefit. Details of the Public Engagement Panel are available

Patients Association project

6 Apr 2023

The Patients Association has announced a new project with the Department of Health and Social Care on the use of patient data - Your chance to help shape the future of patient health and care data. "…Your health and care data, contained in your records, saves lives. Health and care organisations use patient data to improve care, speed up diagnosis, plan local services and research new treatments. However, patient data are also deeply personal. There are strict rules around how your data can and can’t be used to protect your privacy, security and confidentiality. But are these protections widely understood and do they provide reassurance to the public? We will be working on a project over the next few months – based on a series of focus groups - that examines these issues in detail…" The link to register interest in the project and focus groups is here.

DataLoch - Engagement opportunity

17 Mar 2023

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

17 Mar 2023

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

9 Mar 2023

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?

9 Mar 2023

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

9 Mar 2023

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

9 Mar 2023

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

9 Mar 2023

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

8 Mar 2023

Our response to the BMJ article "GP surgery withdraws from kidney screening pilot"

Paper on citizen access to patient records

24 Feb 2023

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

24 Feb 2023

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

UK Parliament Report

24 Feb 2023

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

17 Feb 2023

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

17 Feb 2023

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

17 Feb 2023

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

17 Feb 2023

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

9 Feb 2023

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.

British Medical Journal Article

9 Feb 2023

Data privacy: GP surgery withdraws from kidney screening pilot after patients voice concerns The British Medical Journal (BMJ) has published the article Data privacy: GP surgery withdraws from kidney screening pilot after patients voice concerns. The kidney screening at home pilot was for the direct care of GP surgery patients. It was funded by NHS England and run by a private technology company. The surgery cancelled the pilot after three patients raised concerns about privacy. At least one complained that their Type 1 Opt-out* had not been applied. As the pilot was for direct care, Type 1 Opt-outs did not apply. The BMJ writes: “The case has highlighted the sensitivities and complexities concerning access to and use of NHS patients’ data”. The case also highlights the ongoing, and worrying, confusion around opt-outs, both for GP practices and their patients. The surgery states: “In future, we have decided that we will not take searches on trust and we will have a low threshold for excluding those with a type 1 opt-out code. Also, when texting patients to inform them of a service such as this, we will include an immediate opt-out option for the patient to reply to us directly”. use MY data Associate Member, Paul Affleck, submitted a rapid response to the article, under the heading Type one objections should not impede direct care. Writing in a personal capacity, Paul notes the pressures on GP practices, but also their responsibility as data controllers. He examines the difficulties of the case, including: “Had type one objections been applied other patients who had registered such an objection could have justifiably complained they were being inappropriately denied direct care”. Unfortunately, the article, published on 20 January, is not open access. *Type 1 Opt-outs –information about opt-outs in England is available at https://www.nhs.uk/using-the-nhs/about-the-nhs/opt-out-of-sharing-your-health-records/ Next steps It is a concern that GP practices, including our own, may not understand the opt-out system in England. Following discussion with the Executive Group, the Secretariat will: 1) Write a rapid response on behalf of use MY data to submit to the BMJ. As part of the response, we will call for clear information and guidance on opt-outs for GP surgeries and their patients. 2) Contact the National Data Guardian and NHS England, to highlight the issues.

Spotlight on statistical work in Scotland

9 Feb 2023

Publication of Management Information and official statistics sources on statements related to pressures facing the NHS The blog links to details of how routinely collected patient data was used, to provide statistics to measure the performance of, and pressure, on the NHS. The statistics showed “where further action will have greatest impact…” and led to planning to improve services for patients.

Cancer statistics for England

9 Feb 2023

The House of Commons Library has published Cancer statistics for England. Produced using routinely collected patient data, the statistics are “on new cancer diagnoses, deaths, and survival rates in England”.

Cleft Registry and Audit Network

9 Feb 2023

CRANE (Cleft Registry and Audit Network) Annual Report published CRANE (Cleft Registry and Audit Network) – the database with “information about all children born with cleft lip and/or cleft palate in England, Wales and Northern Ireland” - has published the CRANE 2022 Annual Report, emphasising the value of collecting, using and linking patient data. “With your data we have been able to write 11 scientific research articles over the past decade…This work helps to improve…the treatment pathways and experiences of current & future patients.” A follow-up event focussed on learnings from the report, including identifying data submission barriers.

BBMRI-ERIC Stakeholder Forum

9 Feb 2023

Our membership of the Forum has now been terminated, due to the UK Government terminating its membership of BBMRI-ERIC

NHS Digital merger with NHS England

3 Feb 2023

An overview of the key reasons for NHS Digital becoming part of NHS England. It is great to see that the ‘data sharing agreements section’ requests the acknowledgement of patients and their data, via use MY data’s Patient Data Citation: “The application process for data remains the same and any applications in progress will continue to be processed as usual. We will continue to publish details of the data we share. If you are publishing outputs that arise from the data then you should quote the following: ‘This work uses data provided by patients and collected by the NHS as part of their care and support.’” The article was published on 01 February 2023

Chief Scientist Office Public Engagement Group

2 Feb 2023

New members are sought for the Chief Scientist Office Public Engagement Group in Scotland. The requirements of being a member include an interest in health research. The final deadline for expressions of interest is Friday, 31 March.

Lessons from data sharing during the pandemic

2 Feb 2023

The Institute for Government (IfG) has published Lessons from data sharing during the pandemic: General Practice Data for Planning and Research. This forms part of a series case studies from the IfG and summarises a roundtable event, July 2022. use MY data was invited to attend and was represented by Executive Group Members, Dave Chuter and John Marsh. A key point: “Greater public involvement at all stages…with honest communication from government about risks as well as benefits, and better collaboration between government, the NHS and expert non-government organisations, are vital. This should help improve a project as well as earning public trust."

Welsh Senedd data event

2 Feb 2023

What impact does living with type 1 diabetes have on children’s education - Wednesday, 15 February, 12:30 to 13:30

National Cancer Registry of Ireland report

2 Feb 2023

Cancer inequalities in Ireland by deprivation 2004 to 2018, uses routinely collected patient data. Key findings include: “Although cancer incidence rates have fallen and survival rates have improved overtime across the majority of cancers, there is no evidence of any reduction in disparities between the least and most deprived areas”. The contribution of patients is acknowledged via the Patient Data Citation.

Consultation with citizens about data

2 Feb 2023

The International Journal of Population Data Science (IJPDS) has published Researchers in Kent, Surrey and Sussex consult with citizens about “unlocking health data” – an overview of a study led by Dr Elizabeth Ford, Brighton & Sussex Medical School. What comes through clearly is the view of participants that transparency is essential for trust in the use of their data. As part of this, there should be “a commitment to involvement of the public from the outset and also a commitment to acting upon the advice given to them by public contributors. Participants were worried that a public panel might be set up but that no-one would act on the advice…” The study was published on 30 January 2023

Dare UK Survey

19 Jan 2023

Dare UK is hosting a survey to develop a deeper understanding of the UK’s data research infrastructure landscape. This is for those who “manage an infrastructure within the UK that enables research on sensitive data – for example, a trusted research environment (TRE) or other secure data environment which provides access to and/or enables research and analysis using sensitive data…” The survey is open until Wednesday, 15 February.

UK Covid Vaccine Research Hub Report

19 Jan 2023

The new report Patient and public involvement in COVID-19 research: bridging the gap between theory and practice from the National Core Studies Immunity Programme, part of the UK Covid Vaccine Research Hub, aims to “encourage more research teams to consider involving patients and the public in their work, and to provide practical examples of how this can be done to great effect”. The report “produced with substantial contribution from a group of patients, carers and members of the public…describes how research teams…involved patients and the public in their work…it offers insight into the challenges overcome, the lessons learned and the positive impact of the involvement…”.

Usher Institute Report

19 Jan 2023

The Usher Institute, University of Edinburgh, has published Early Pandemic Evaluation and EnhancedSurveillance of COVID-19 Patient and public involvement in EAVE II: the first two years. EAVE II is the Early Pandemic Evaluation and Enhanced Surveillance project, which was set up to track the COVID-19 pandemic and vaccine effectiveness for people in Scotland, through using routinely collected health data. The report details the involvement and positive impact of patients and the public on the project.

Usher Institute Research

19 Jan 2023

The EAVE II team has published Uptake of monoclonal antibodies and anti-viral therapies for COVID-19 in Scotland, along with an overview and a plain English summary. The research was made possible through using and linking routinely collected patient data. The plain English summary highlights the value of this data; identifying those “who were less often treated can help to improve care pathways, and in turn reduce the need for hospital or intensive care admission”.

use MY data article published in BMJ

12 Jan 2023

Our article published in the British Medical Journal (BMJ) brings patient voices to the discussion about full access to patient records in England

Public Engagement in Data Research Initiative

12 Jan 2023

PEDRI has published a survey about Resources for Research and Statistical Public Engagement and Statistics

New Statistics: Metastatic Breast Cancer

12 Jan 2023

Estimated Prevalence of Metastatic Breast Cancer in England, 2016-2021

New home for Understanding Patent Data

12 Jan 2023

Understanding Patient Data (UPD) has a New home at NHS Confederation until the end of 2024

Public Engagement Strategy workshop

15 Dec 2022

Health Data Research UK is hosting a Public Engagement Strategy workshop on Tuesday, 10 January from 14:00 to 15:30, seeking views on engaging with the public about health data research

Closing gaps in patient data for Black and South A

15 Dec 2022

Written by Liberating Knowledge as part of their project partnership to investigate the inequalities in patient data for Black and South Asian communities

What do we mean by public benefit?

15 Dec 2022

National Data Guardian for Health and Social Care in England, has published new guidance that is the culmination of public attitude research

The health data gap for Black and South Asian peop

8 Dec 2022

Liberating Knowledge is hosting a webinar on Tuesday, 13 December, 12:30 to 13:30

Educational Attainment and Childhood-Onset Type 1

8 Dec 2022

All the individuals living with diabetes who have provided the data that underpin this study

National Audit of Breast Cancer in Older Patients

8 Dec 2022

Information forhow NHS organisations in England and Wales can improve their data for breast cancer audit

Charities in action: involving patients and the pu

8 Dec 2022

New Association of Medical Research Charities (AMRC) report published

Health and Care Research Wales

17 Nov 2022

Comments sought on: Research matters: our plan for improving health and care research in Wales; deadline 6 Dec 2022

First UK study of COVID-19 waning

17 Nov 2022

The Usher Institute, University of Edinburgh, has published research which uses routinely collected patient data

Podcast - Saving lives with data

17 Nov 2022

The Open Data Institute (ODI) hosted the podcast Saving lives with data as part of its Data Decade

HDR UK Public Advisory Board roles

1 Nov 2022

Health Data Research UK (HDR UK) is advertising for Public Contributors to join its Public Advisory Board - deadline 13:00 on Monday, 21 November

Synthetic data workshop

20 Oct 2022

Research Data Scotland (RDS) is hosting a Synthetic data workshop on Monday, 22 November, at 14:00

Health and Care Research Wales – Annual report

20 Oct 2022

Health and Care Research Wales has published its annual report 2021/22- Where would we be without research?

Information Commissioner’s Office Research Guida

20 Oct 2022

Discusses the research provisions in the UK General Data Protection Regulations (GDPR) and the Data Protection Act 2018 in detail

Engagement opportunity extended

13 Oct 2022

STANDING together - A project to Develop Standards for data Diversity, INclusivity and Generalisability - closes 17 October

Health data collection survey

13 Oct 2022

Survey aimed at Black & South Asian people: How do you think your health data should be shared and used by the NHS?

Engagement opportunity

29 Sep 2022

Researchers seeking views on the General Practice Data for Planning and Research (GPDPR) programme

SAIL Databank Annual Review

29 Sep 2022

The (Secure Anonymised Information Linkage) SAIL Databank has published its 2021/22 Annual Review

NHS England – Policy paper

22 Sep 2022

NHS England has published Secure data environment for NHS health and social care data - policy guidelines

Health Data Research UK Conference

15 Sep 2022

Health Data Research UK (HDR UK) is hosting its Scientific Conference on 14 December - bursaries are available

NCRI Event

8 Sep 2022

Missing data in clinical trials: how to reduce it, handle it and report it - online, Thursday, 22 September, 11:00 to 12:00

Secure Data Environments (SDEs)

8 Sep 2022

NHS England has published a summary about Secure Data Environments (SDEs)

National Data Guardian Report

8 Sep 2022

National Data Guardian (NDG) for Health and Social Care in England has published the NDG 2021-2022 report

Genomics England Job role

8 Sep 2022

Genomics England is seeking a new Chair of their Access Review Committee (ARC)

Scottish data strategy

17 Aug 2022

use MY data has responded to the Scottish Governments consultation on its first Data Strategy for health and social care. Our response is published on our website here.

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