Previous Events

Next steps for patient records in the NHS and use of patient data in England

Westminster Health Forum, Wednesday, 22 May, 2024, online

Executive Group Member, John Marsh, has been confirmed as a panellist at this event 

"It will be an opportunity for stakeholders and policymakers to discuss priorities for the rollout of the Federated Data Platform, introduced by NHS England last year aiming to support health and care organisations utilise data and work together to understand patterns, solve problems and plan services for their local population."

Find the agenda here

Tickets: £260 plus VAT. Information about concessionary tickets can be found on the booking page.

To find out more and book

“Following the high calibre applications submitted for the Transparency Standards Funding call announced in September 2023, HDR UK will be hosting an Alliance Transparency Showcase on 22nd May 2024 1.30pm – 5pm (drinks and canapes will be served from 4pm), to share and celebrate the outputs and impact of all 19 funded projects from across the UK”

Wed, 22 May 2024 13:30 - 17:00

Tickets available here

Members of the use MY data Secretariat will be attending.

Health Data Research UK’s annual conference will be a free two-day, hybrid event to celebrate progress and bring people together to accelerate the trustworthy use of health data for public benefit 

The conference is now SOLD OUT on the 5 March, SOLD OUT on 6 March in-person tickets, but virtual tickets are still available for the 6 March. 

use MY data Members will be attending the event, and we are having a use MY data stand in the Exhibition area

use MY data will be at the Cancer Research UK Data-driven research conference, with use MY data Members taking speaking and chaoring roles.  We will also have a use MY Data stand in the exhibition area.

Details of the event are available here.  

“Visit Health Data Research UK at their stall in St. George’s Market, Belfast and delve into the world of health data. Learn about its diverse applications in advancing scientific understanding and improving outcomes.”

16-18 February. Find more information here

“The way people think about health data and how we use it has been changing. Views were sought on the way the Infections in Oxfordshire Research Database (IORD) has been set up and run.

IORD is a large data warehouse containing de-identified information from the Oxford University Hospitals NHS Foundation Trust. We have been using the database for 15 years to find ways to help our healthcare system become better at dealing with infections. You can see some of the things IORD has done here.

IORD has lots of systems and processes in place to protect people’s data, and we have Research Ethic Committee and Confidentiality Advisory Group approvals for this.

use MY data Members attended an online half-day group session, hosted by Chris Carrigan on Monday 12 February, 1:30-4:00pm. Before the session they were sent a summary (9 pages of text, a flow diagram and two infographics) which was the focus of discussions at the workshop

Although the focus is local to Oxfordshire (the database itself only contains information from people who have ever visited or had tests done at Oxfordshire hospitals), the principles behind the database are general/generic.

DARE UK (Data and Analytics Research Environments UK, has organised a public webinar to examine the findings from the Driver Projects projects and their implications for the future of the DARE UK programme. The Driver Projects explore some of the essential components and requirements for a UK-wide network of Trusted Research Environments (TREs).

There will be quick, public-friendly presentations on each Driver Project followed by Q&A to shed more light on their work. More about the event here: Linking Sensitive Data: Insights from the DARE UK Driver Projects, Webinar, Wednesday, 17 January 2024; 12 - 1:30 pm - DARE UK. This event is free and open to everyone to register and attend.

Thursday, 20 July, 12:00 to 13:00.

Join like-minded people and the DARE UK team to discover how they are building communities to support UK-wide sensitive data research.

This webinar, led by the DARE UK programme team, will cover a range of topics to provide you with a clearer understanding of the DARE UK Community Groups initiative.

The webinar is free to attend.  Full details and registration are available here.


Raising Public and Health Service Awareness of Metastatic Breast Cancer (MBC)

Tuesday, 13 June, 10:00 to 16:30


METUPUK partnered with the Mayor of Greater Manchester, Andy Burnham, local MP Debbie Abrahams and the Greater Manchester Cancer Alliance to host a one-day conference about improving regional and national MBC services. The Conference was to highlight a ‘case for change’ that could be shared with Cancer Alliances and health systems across England and the rest of the UK.

The conference has been driven by use MY data Member Jo Taylor, and our Expert Data Adviser, Chris, spoke in the session about data collection for metastatic breast cancer.

This was a closed conference by invitation only.

Monday, 08 June, 09:00 to 13:30

On 08 June our Member, Debbie Keatley and Expert Data Adviser, Chris Carrigan, represented use MY data at the event Utilising data to drive health and social care service developmentsThey took part in a panel that discussed public engagement and trust in the use of health data.   The themes that Debbie and Chris focused on included:

Speaking about public trust, Chris made the point that “the missing piece for me, is communications to patients to public and the NHS itself.  If you contrast the amount we spend, collectively on technology, on data collection on data science, and compare that with what we spend our communications about data to people, you see a stark difference”.  Debbie emphasised this, noting “we need everyone involved in care and research to be more open and to talk in a language that people can understand”. 

In summary, Debbie and Chris both highlighted use MY data’s mantra to those using our patient data:

Say what you do, do what you say.


Artificial Intelligence and Patient Data: what's the reality?

Thursday, 30 March 2023, 10:00 to 11:30


There has been huge interest in Artificial Intelligence (AI), in particular how to maximize the benefits of AI for healthcare, while minimizing its risks and avoiding its pitfalls.  But aside from theory, guidelines and principles, what practical progress has been made in the use of AI to improve patient care and outcomes?  And whilst we may have seen AI being increasingly used to automate the reading of digital medical images, how has AI been used with other patient data? 

Our webinar attempted to demystify AI, beginning with an outline of what is actually meant by AI.   Our speakers discussed not just how AI could improve patient outcomes and healthcare delivery, with some practical real-world examples including how the patient voice can be involved effectively and the hurdles which need to be overcome to realise the potential of AI.

The speakers were:

  • Sandra Irvine, use MY data Member
  • Anna-Grace Linton, Researcher, University of Leeds
  • John Rigg, AI Specialist, IQVIA.

The webinar summary and recording are available here


Online access to GP health records – what’s in it for patients?

Thursday, 16 March, 12:00 to 13:00


The Patients Association hosted a webinar to focus on “NHS England's programme to enable patients to access their medical records via the NHS App”.  This is very topical, as many patients are still awaiting full access to their records.

Speakers included patient representatives who spoke about the benefits of being able to access their health information digitally, NHS England and Dr Brian McMillan, Senior Clinical Lecturer, Centre for Primary Care and Health Services Research, University of Manchester and use MY data Associate Member.

The webinar was free to attend and the recording will be posted afterwards on the Patients Association website.

Health Data Research UK Scientific Conference 2022: Data for global health and society
Wednesday 14 December 2022, 9:30-17:00
Birmingham and online 

The Health Data Research UK (HDR UK) Scientific Conference 2022: Data for global health and society took place on Tuesday, 14 December from 09:30 to 17:00 running in a purely online format.  

use MY data was invited to be a partner for the Conference as an organisation “aligned with HDR UK’s mission to enable discoveries that improve people’s lives and which have a strategic connection to the themes and content of the conference".  As part of this, we had a virtual exhibition stand at the event.


Bloomsbury Festival 2022, London

Thursday 20 to Saturday 22 October 2022

use MY data Member Paul Saunders and Expert Data Adviser Chris Carrigan took part in the Discovery Hub, which ran for three days as part of the Bloomsbury Festival 2022, speaking about the work of use MY data and the importance of patient data. 

The Hub had an audience of schools and families and provided an exciting mix of science and creativity for three days at the heart of the festival. The Discovery Hub featured science and creative teams from universities and institutions, with interactive exhibitions and workshops.


TechBio UK 2022, London
Date: Thursday 13 October 2022
Time: 09:30 - 18:00

On 13 October use MY data took part in a panel at the TechBio UK conference, arranged by the UK Bioindustry Association.  David Snelson, Advisory Group Member, represented use MY data on the AI and Data Track; Data access and Governance panel.  The panel was led by Daniel Pavin of Covington; and also featured Claire Bloomfield, NHS England, Joe Day, Cancer Research Horizons and James Peach, Human Centric Drug Discovery.

The topic summary was: “The effective access to and utilisation of data is at the core of the techbio revolution…Firstly, we will consider the ever-important issue of building UK infrastructure for data access, as many companies continue to find it difficult to access the data they need to effectively develop treatments for patients. Secondly, we will review recent successful collaborations between techbio and big pharma, demystifying the ‘black box’ and helping both sides navigate the cultural and technical challenges to build relationships greater than the sum of their parts”.

David highlighted how use MY data contributes through advocacy, bringing patient voices and perspectives, support and challenge to organisations/projects which use patient data.  To the question “What did we do when companies did not follow our guidance on transparency etc.?”, David answered that use MY data would then need to withdraw its support. 

There was a general consensus from speakers and delegates, of the need for industry and the NHS to engage and involve patients on the use of their data.  And, alongside this, that it was becoming more of a challenge to find patients, willing, able and with time available.  David acknowledged this – and that increased patient engagement and involvement, also means an increasing workload for patients.

Bringing a patient voice to the discussion, David’s key points included:

  • Patient views on the use of their data vary – many are keen on the use of their data, but a number are very wary.  Patients do have a choice, via the opt outs.
  • The need to be open and transparent is vital – citing the General Practice Data for Planning & Research (GPDPR) as an example of how a lack of transparency led to mistrust and opt-out increase
  • There is a need for patients to have confidence in the NHS and industry about the handling of patient data – again, openness and transparency is essential
  • On industry best practice, David cited use MY data’s position statement – Expectations of organisations which use our patient data  
  • Promoting the use of use MY data’s Patient Data Citation, as a benchmark for acknowledging that patients are the source of the data – embedding the use of the Citation within a company and then acting in its spirit.


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

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

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

“NHS data grab!”

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

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

This webinar took a long hard look at these issues, as requested by many of our members. Our speakers offered a range of perspectives and real-life examples, from those “selling” and those “buying” our data and from those collecting and storing it, and from all four nations in the UK

The event was chaired by use MY data member Debbie Keatley, with questions coming from the delegates.




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

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

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

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

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

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

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

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

The recording and summary of the webinar are available here.


Educational “Drop in” session

Date:           Tuesday, 13 September 11.00 – 12.00

Platform:      Zoom

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

In a world where there is often significant risk-aversion to the sharing of patient data, there has been increasing interest in the topic of synthetic data (sometimes called simulated data) to make research possible in a safe, secure way. In essence, synthetic data is designed to look closely like the real data it represents, but is completely fictitious.

The Simulacrum is one example of synthetic data in real use.  It is a database of artificial patient-like cancer data, which is being used by researchers with no danger of breaching patient confidentiality.

At our interactive Education session we heard from Paul Berg, Head of Real World Solutions at IQVIA, and Julia Levy, Principal for Oncology Real World Evidence. Paul and Julia have been active users of the Simulacrum for some years, and described how the Simulacrum has been used, by whom, and for what benefit. 

If you would like some background information about synthetic data, you can read our own Position Statement here and you can read about the Simulacrum here.  You can watch the session again here, alongside all our other Members' Education sessions.

use MY data Educational “Drop-in” Session  

Date:           15 July 2022, 13.00-14.00

Platform:     Zoom 

Topic: What’s in the new NHS Data Strategy, how does it reflect our own thoughts, and what do you think?

On 13 June the Department of Health & Social care in England published the new Data Strategy; “Data saves lives: reshaping health and social care with data”.  The Strategy “sets out ambitious plans to harness the potential of data in health and care in England, while maintaining the highest standards of privacy and ethics.”

At our next Educational Drop-In Session we will be looking at the contents of the Strategy, highlighting and discussing the key areas of interest to use MY data Members, flagging good point, bad points, any areas of concern and any things which we think are missing.   

As with all our Education sessions, we will be limiting the numbers to 50, to try to keep the session as a dialogue and ensure they are interactive.

Whilst the Strategy only covers England, the session should also be of interest to those Members outside of England.  In fact it would be very helpful to bring your voices to the table to think about the overall UK perspective, where there are problems which are best addressed at the UK level, and where there are exemplars outside England which need to be recognised.

You can read the Strategy here:

Registration is now open here and will remain open until the start of the session.  However, as places are limited to 50, these will be available very much on a first come, first served basis, so if you are interested you are encouraged to register early.


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

 We held out last 1-hour educational session for use MY data Members on Friday 17 June, 15.00 – 16.00. In the session we explored the reasons why it takes so long for researchers to get access to the data they need in order to start their research.

This topic had been requested by several of our members who, having heard stories about research being stopped or abandoned because of problems in researchers getting access to the data to do the work, despite having the ethics in place, having patient support, having legal permissions and the team ready to do the work, want to understand why.  So in this session we asked the question, exactly what is the problem here? 

To give a first-hand account of the barriers researchers face trying to get hold of the data they need, we  invited Professor Richard Feltbower to join us.

Richard is the Director of the Yorkshire Specialist Register of Cancer in Children and Young People. His current research involves the use of linked datasets such as primary/secondary care and the National Pupil Database to evaluate long-term outcomes including mental health, educational attainment and treatment toxicity.  He is a member of the Childhood, Teenage and Young Adult Cancer Expert Advisory Group within Public Health England/NHS Digital and the NCRI Teenage and Young Adult Clinical Studies Group.  He is also Chair of the CCLG Epidemiology and Registry Group.

But despite Richard being one of the most respected researchers in this area, he still experiences serious problems in basic data access.  During this session Richard walked through all the steps that he has to take to gain access to data to do his work, describing where he has experienced delays, his frustrations and suggestions for areas that need improvement.


The Goldacre Review: “Better, Broader, Safer: Using Health Data for Research and Analysis” – why is it so important, what are the findings, and will it make a difference?

We held our last 1-hour educational session for use MY data Members on Wednesday 11 May, 11:00am-12:00.

Back in 2021 Dr Ben Goldacre was commissioned by the Secretary of State for Health and Social Care with “finding ways to deliver better, broader, safer use of NHS data for analysis and research: more specifically, it was asked to identify the strategic or technical blockers to such work, and how they can be practically overcome”.

The Review was published in April 2022. In this session we explained what the Review says, why it is important and what the Review means in practical terms. We also covered how the Review maps onto use MY data’s position on Trusted Research Environments (TRE’s).

You can watch the recording of the session on our website

Use of patient records and data - health and social care improvement & delivery, innovation priorities, patient involvement & trust, and harnessing the NHS App

Friday, 29 April 09:00 - 13:00

use MY data were invited to speak at the Westminster Health Forum event Use of patient records and data - health and social care improvement & delivery, innovation priorities, patient involvement & trust, and harnessing the NHS App.  The event took place online on Friday, 29 April from 09:00 to 13:00.

“This conference will examine the next steps for the use of patient records and data within the NHS and clinical research.  The agenda also looks at the opportunities for improved patient engagement in their care, including through the NHS app which enables patients to easily access their own records.”

John Marsh, Advisory Group Member and Chris Carrigan, Expert Data Adviser represented use MY data during their session  - Encouraging patient involvement in the development of care plans, and improving public health literacy.

Full details available here.

use MY data - What does your health data actually look like? Educational “Drop-in” Session  

Date:           Friday 22 April, 10:00 to 11:00

Platform:      Zoom   

We held our last 1-hour educational session for use MY data Members on Friday 22 April. The topic was ‘What does your health data actually look like?’. The session was held on Zoom and, as always with our activities, is free to attend. 

In this session we walked through the process of how health data gets created, where it is held and what it looks like. We also covered where your data goes once it has been collected as part of your care.

This follows on from the success of our first educational session last month on ‘Data to measure inequalities’ (the recording of which you can watch on our website ), and we are now planning on holding monthly sessions to provide an overview on specific data-related topics that our Members might want to find out more about.

A link to the event recording can be found here.

use MY data - Using our voice - how our members are encouraging the use of health data to benefit others

Wednesday, 30 March, 10:00 - 11:30

Our use MY data webinar 'Using our voice, how our members are encouraging the use of health data to benefit others', took place on the 30th March 10-11.30am, when we heard how our members are incorporating the use MY data position on patient data matters and guiding principle of transparency in their work.

Through showcasing the work of some of our members, we hoped to inspire others to become more actively involved in our work and help us increase the profile and membership of use MY data.

Chaired by Richard Ballerand, use MY data Advisory Group member, we heard from the following:

Pete Wheatstone - Putting use MY data principles into practice -Pete’s experience within Patient-Public Involvement
Fran Husson - Championing patient access to their healthcare data
Emily Lam - Achievements and challenges in Patient-Public Involvement
Rob French - How we're embedding patient and public engagement in our work
Helen Bulbeck - Working with National Cancer Registration and Analysis Service (NCRAS) for patient benefit
Lauren Brown, Arun Sujenthiran & Bob White - Creating the Patient Voices Panel, and how the principles of involvement and transparency have informed our approach

This webinar also reflected on use MY data’s activities and impact over the past 12 months and gave a forward look at what our priorities are for the coming year.

As with all our events, the webinar was free to attend.  A short summary and the webinar recording is available here.

digitalhealth REWIRED 2022

Wednesday, 16 March

use MY data took part in the panel session How can we use data to empower patients to take ownership of their care? at the digitalhealth REWIRED 2022 conference, in the Innovation strand of the programme. 

This session aimed to focus on the increased use of patient data in the NHS, highlighting examples of increased patient data improving health outcomes, how person-centred remote innovation can address diverse communities and whether this is a more empowered approach for patients.

Our Advisory Group Member, John Marsh, joined the panel to explore:

  • are patients becoming more educated around their data and how it can be used?
  • do users/will they now expect a digital offering and access to their patient records?
  • how do we tackle data privacy and information governance?

use MY data: Data to measure inequalities Educational Session

Thursday, 3 March 10:00 - 11:00

On Thursday 3 March we ran a 1-hour educational session for use MY data Members, on the topic “Data to measure inequalities”.  The session was held on Zoom and, as always with our activities, was free to attend.

The session comprised a short presentation about different dimensions of equality, including an overview of what patient data exists to measure inequality.  The session included a more detailed look at ethnicity data in particular, including where data is recorded (and where it isn’t), where it has been used to measure inequality in areas of health, and how you can see some of these results.

This first educational session was a pilot for us to explore whether to run a series of similar events throughout the year. The purpose of the sessions was to provide an overview on specific data-related topics that our Members might want to find out more about. We wanted to make the event as interesting and useful as possible whilst also enabling a two-way dialogue, something which is often difficult to do online.

A recording of the session can be viewed here.


Precision Medicine Forum-Patient Week

Monday, 29 November to Thursday, 02 December (revised dates)

Precision Medicine Forum’s online Patient Week event will run from Monday, 29 November to Thursday, 02 December.  This follows the inaugural and successful Patient Week, held in March this year. 

Patient Week “convenes healthcare professionals, researchers, industry, payers and patients/patient advocates in a unique setting which puts the patient front and centre of the discussions.” 

The event will include panel discussions between industry, patient groups, patients, researchers and healthcare professionals.  There will be the opportunity to ask any pressing questions you may have during these talks.  Additionally, you will be able to join roundtables and take part in 1-to-1 networking.

use MY data is proud to be a partner for the event and will be taking part in the programme and exhibiting online.

The event is free to attend for patient advocates, researchers, not for profit organisations, charities, and health care professionals. 

Further details and registration are here  Details of the programme will be available shortly.

National Cancer Research Institute Festival

The UK’s largest cancer conference will bring together the brightest scientific and medical minds to advance cancer research in the UK

Taking place on 8-12 November 2021, the NCRI Festival will feature a number of topical sessions, panel discussions, debates and co-creation sessions on strategic topics, as well as proffered paper presentations highlighting the latest cancer research.

The programme includes a session on 11 Nov 2021 at 13:00 titled 'Harnessing the patient voice to remove the road-blocks around tissue donation and data sharing', which includes speakers from use MY data.

Registration is open here 

Primary Health Care Specialist Group (PHCSG)

Annual conference 2021

40th Annual Conference 'Doing IT better'

Friday 8th October 2021 8:30 – 16:30

The focus of the Primary Health Care specialist group is the development and dissemination of best practice in primary care informatics and seeks to influence policy makers to ensure the effective application of informatics for the benefit of patients.

The theme for this year’s conference is ‘Doing IT better’ focussing on how we use our knowledge and experience to make the future of IT and digital better. With sessions ranging from how we get evidence into practice, to interoperability and utilising big data, this day has something for everyone working in primary care health informatics.

The conference includes a panel discussion, "Information Sharing post COPI - should we go back?".  The panel includes Chris Carrigan, Expert Data Adviser for use MY data.

Details are available here.

Scientific Conference: Data Insights in a Pandemic.

Wednesday, 23 June, 14.50 - 15.40

Health Data Research UK’s (HDR UK) annual conference took place on Wednesday, 23 June under the heading Scientific Conference: Data Insights in a Pandemic.

use MY data co-convened a session with Understanding Patient Data. ‘Nothing about us without us’: Co-development with public and patients which ran from 14:50 to 15:40.  The session was co-chaired by use MY data Member, Maisie McKenzie and the patient representative on the panel was Margaret Grayson, who is a use MY data Member.

The recording of the conference and the outputs generated are avilable to view here.

Trust and transparency: GP Data for planning and researchTitle graphic

Wednesday, 16 June, 11.00 - 12.30

Following the recent announcement about the planned General Practice Data for Planning and Research (GPDPR), we brought this webinar together as part of the need for communication and dialogue about the GDPDR, to ensure there is a balanced debate about anticipated benefits versus potential risks.  The webinar was devised by patients and brought a patient voice to the discussions.

This webinar ran as a facilitated panel discussion, taking questions directly from delegates and putting them to a panel.

Our panel:

  • Phil Booth, Coordinator, MedConfidential
  • Dr Nicola Byrne, National Data Guardian
  • Dr Arjun Dhillon, Caldicott Guardian, NHS Digital
  • Prof Mark Lawler, Scientific Director for DATA-CAN, the HDR-UK Hub for Cancer
  • Geoff Schrecker, Retired GP, Retired chair of EMIS National User Group, Deputy Chair IGARD, RCGP Clinical Champion for Patient Data Choices
  • John Marsh, Patient, use MY data 

Following an initial introduction by Dave Roberts of NHS Digital to set the context of the GPDPR, the facilitated panel discussion answered questions from delegates, to highlight areas where more information is needed, where there are concerns, where there are anticipated benefits, where there are suggestions from the delegates.

The webinar was free to attend and open to all.  

The recording of the webinar, and a short summary, is available here 

A researcher's journey to accessing patient dataTitle graphic

Tuesday, 25 May, 10.00 - 11.30am

In this webinar, we explored the steps that researchers take, to access a patient's healthcare data - from application to data access through to a completed research project.

We contrasted how this journey differs across the four UK nations and heard from researchers about the challenges and frustrations that they face.

Our patient panellist looked at where the patient voice currently sits in this data access landscape and the benefit this brings, and delegates explored the gaps, including where patient input is lacking.

Our speaker panel:

  • Paul Affleck, UK Colorectal Cancer Intelligence Hub Programme Manager, Independent Specialist Ethics Member of the Independent Group Advising on the Release of Data (IGARD) and Lay Member of the Ministry of Defence Research Ethics Committee (MODREC)
  • Dr Alex Bailey, Programme Manager, Medical Research Council Regulatory Support Centre
  • Pete Wheatstone, Advisory Group Member, use MY data
  • Dr Elizabeth Lemmon, Research Fellow, Edinburgh Health Economics, University of Edinburgh

The webinar was open to all and free to attend. The recording and short summary is available here

Precision Medicine Forum Patient Week

8-11 March 2021, Virtual Sessions
use MY data member took part in the following sessions during the week:


Wednesday, 10th March, 10:00 - 11.30am

"The Pivotal Role of Real-World Data and Real-World Evidence in Healthcare Decision Making"

This session took the form of a moderated panel discussion, including:

  • Gilliosa Spurrier-Bernard, Vice-President of Melanoma Patients Network Europe, Chair WECAN, President of Melanome France
  • Miriam Döbeli, Co-Founder and President, Colorectum
  • Tjebbe Tauber, Patient Advocate, Inspire2Live
  • Chris Carrigan, Expert Data Adviser, use MY data

Watch the session again here

Thursday, 11th March, 14:00 - 15.00

"Putting our Faith in Technology"

  • Understanding the public perception of new technologies
  • AI is our friend, but it will not replace the human touch, challenges the myths.
  • Health tech and telemedicine as a pathway to treatment choices

The speakers were:

  • Richard Ballerand, Advisory Groiup Member, use MY data (though Richard is not representing use MY data at this event)
  • Kevin Chaney, Senior Program Manager, Scientific Advancement Branch within the Office of the National Coordinator for Health IT (ONC)

Watch the session again here


Show me my data!

Wednesday, 3rd March, 10:00 - 11.30am

The idea of patients being able to see, interact and even make corrections to their own health records has been talked about for many years. But what is the reality about patient accessible, and/or patient-held records, across the UK?

Patient access to GP records is now possible, although not without constraints. However patient access to other levels of data, such as that held in hospital systems, appears to be adopted by systems at a slower rate and without the same national movement and guidance.

Our webinar Show me my data! heard from organisations who already provide patient access or patient portals and explored how these organisations fit together, taking a closer look at the NHS App.

We asked what benefits are there for patients to hold their data? Have any of the benefits to patients, or to NHS organisations, ever been quantified?

The webinar included questions from delegates, together with a series of polls and votes seeking delegates’ views on key questions.

Panel Members:
- Sally Rennison – Vice President of Sales, Patients Know Best
- John Parry – Medical Director, TPP
- David Snelson – Member, use MY data.

Our webinar was aimed at patients, relatives and carers, the public and professionals and was open to all who are interested. It was free to attend.

The recording and summary are now available here.

If you would like further information about any of our webinars please contact Emily Boldison 

Trust and transparency in health care: how can we ensure the public supports data sharing?

The King’s Fund invited use MY data to take part in the event Trust and transparency in health care: how can we ensure the public supports data sharing?  The event took place online on Wednesday, 24 February from 13:00 to 14:00.

“This online event explores the importance of patients trusting that their health and care data will be safely and responsibly used by the NHS…This event is the first in a series exploring how we put trust, transparency and fair value at the centre of digital health and care…

Topics which were debated included:

  • trust and transparency – where are we now?
  • the benefits of trust and why it is important
  • the role of leaders in creating trust and a culture of data transparency
  • the benefit of sharing data and how it can be done safely
  • the unknowns and pitfalls, including: who might get left behind without trust, and is trust dependent upon socio-economic background or ethnicity?
  • local vs central – what happens at each level to ensure trust?”

Our speaker was use MY data member, Debbie Keatley. 

The event was free to attend and the on-demand version of the event is available to watch here. with related resources on the topic available here.


The HETT (Healthcare Excellence Through Technology) Reset 2021 conference took place from Monday, 08 February to Friday, 12 February online.  The conference was called Stronger, Together: Uniting the digital health ecosystem to accelerate transformation and improve services and patient care.

use MY data was invited to participate and we took part in three sessions.

The Seismic Shifts in Management of Patient Data – reflecting on the present and long-lasting impacts of Covid-19 
Monday, 08 February, 12:10 to 13:30 – John Marsh, Advisory Group Member represented use MY data


Approaches to adopting Personalised Health Records (PHRs): Empowering patients to manage their care and data
Friday, 12 February, 12:40 to 13:25 – Dave Kelsall, Member, represented use MY data


Establishing a patient centric approach to managing data
Friday, 12 February, 15:30 to 16:10  – Richard Ballerand, Member and Chris Carrigan, Expert Data Adviser, represented use MY data


Full details of the conference and registring to watch the recorded streams are here.  

The conference was free to attend for “those working in the NHS, independent healthcare provision, the care sector, and the wider public sector”. 


Bringing the panel back together

Thursday, 10 December, 2020  12:00 - 13:00

Our 25 November webinar Secret Garden or Open Landscape – Views on Trusted Research Environments examined Trusted Research Environments (TREs) raised so many good questions from delegates with not enough time for the panel to answer these. To remedy this, we brought the panel back together for an interactive session to respond to/discuss delegate questions.

The briefing and recording of both the webinars are available here.


If you have any questions about the event please contact Emily Boldison, our Events & Website Manager 

Our policy on the use of Zoom for our webinars is available here.

Secret Garden or Open Landscape – Views on Trusted Research Environments

Wednesday, 25 November, 2020  10:00 - 11:30

Our webinar focused on Trusted Research Environments (TREs) – how they work, why they are potentially so important and where the patient voice sits in their design, development and running.

The webinar was devised by use MY data members and we were keen to ensure the patient voice is embedded throughout.  There was the opportunity for delegates to ask questions, raise concerns and put suggestions forward.

Our panel comprised:

  • Health Data Research UK - Tim Hubbard, Professor of Bioinformatics at King's College London & Associate Director, Health Data Research UK London Site
  • SAIL Databank - Kerina Jones, Professor of Population Data Science
  • NHS Digital - Brian Roberts, Head of the TRE Service for England
  • MedConfidential - Sam Smith, Coordinator
  • use MY data - John Marsh, Advisory Group Member
Our webinar was aimed at patients, relatives and carers, the public and professionals and is open to all who are interested.  It was free to attend.

The briefing and recording of the webinar are available here.

If you have any questions about the event please contact Emily Boldison, our Events & Website Manager 

Our policy on the use of Zoom for our webinars is available here.

Delivering patient-driven innovation

Friday, 30 October, 2020

The only clinician-led health AI event in the UK, the event was to move the conversation on from the potential of artificial intelligence in healthcare to actual implementation. Chaired by Dr Anthony Chang, Chief Artificial Intelligence Officer at the Children’s Hospital of Orange County (CHOC) and Founder of AIMed, and featuring real use cases from within the NHS, the programme was to support healthcare organisations and innovators to overcome the key barriers to deployment of AI, all viewed through the lens of patient experience.

AIMed are passionate advocates of patient involvement. This session seeks to get people thinking about the ultimate objective of health AI: to deliver better, faster, more targeted care for the people who need it.

use MY data were asked to take part in the event, and Pete Wheatstone, use MY data Advisory Group member, was part of the panel discussion:

The event included

  • Securing patient involvement in the design process
  • Sharing examples of patient-facing AI in deployment
  • Proving the value of AI: are things better or worse?
  • Tackling challenges around public perception and trust

The conference website is

The COVID-19 exit strategy - what next for patient data?Graphic

Wednesday, 9 September, 2020

In order to respond to the unprecedented challenge that COVID-19 brought to the health and care system, the Secretary of State issued a wide package of measures enabling healthcare organisations, Arms’ Length Bodies and local authorities to be able to process and share the data they need to respond to COVID-19.

One part of this package is a range of notices referred to as the Control of Patient Information (COPI) regulations, which allow the processing of confidential patient information for a specific purpose. These notices are due to end in March 2021.

We were joined on our webinar by:

  • Andy Moody, Senior Data Policy Advisor, NHSX
  • Emma Rush, Head of data policy, NHSX
  • Sami Mansoor, Policy Engagement Manager, IG Policy Team, NHSX
  • Suki Panesar, Deputy Director, Strategy and Development, Data, Analysis and Intelligence Service, NHS England and NHS Improvement

Andy, Sami, Suki and Emma explained more about the COPI notices and what they have meant for the use and sharing of patient data, touching on some projects that are currently underway using these notices. In particular, what could happen in March 2021 when the COPI notices are due to end.

Andy covered how the COPI regulations have affected a patient’s right to opt-out of their data being used.

The briefing and recording of the webinar are available here.

Our policy on the use of Zoom for our webinars is available here.

Ada Lovelace Institute - Ethics & Society Stage @ CogX

Monday, 8 June, 2020

Ada Lovelace Institute hosted the first day of the Ethics & Society Stage at CogX - see the full list of Ada-curated sessions here.


  • Anja Thieme, Senior HCI Researcher, Microsoft Research Cambridge
  • Chris Carrigan, Expert Data Adviser, useMYdata
  • Simon Burall, Senior Associate, Involve
  • Kerry Furini, Citizen and online public deliberation pilot participant

Topics for discussion

As we enter into a new industrial revolution, many people are being left behind by technological advancements. This is exacerbating trends of political disenfranchisement and polarisation. Bringing the wider public into discussions around technology policy and governance is critical to ensuring the legitimacy and quality of technology, ensuring it works for people and society. 

A recording of the discussion is available here.

Uncharted territory – Using patient data to tackle COVID-19

Start time: 10:00, duration 1.5 hours

The May 2020 use MY data event took the form of a virtual meeting with a focus on how the use of data has changed amid the COVID-19 pandemic.

The event was aimed at patients, relatives and carers, the public and professionals and was open to all who are interested and is free to join.  Over 150 delegates registered for the webinar.

We are currently in uncharted territory with changes happening rapidly within the health data landscape. Although the COVID-19 pandemic has seen a significant focus on data, it has also raised a number of important questions about the sharing and use of data as well as highlighting the challenges that are associated with the use of data.

We invited three speakers to talk us through what is happening and what the future opportunities and challenges are:

  • Natalie Banner, Understanding Patient Data
  • Paul Charlton, use MY data Advisory Group member
  • James Peach, DATA-CAN, the Health Data Research Hub for Cancer

The briefing, slides and recording of the webinar are available here.

Our policy on the use of Zoom for our webinars is available here.

UKCRC Webinar

Overcoming Challenges in UK Biobanking, Part 1: Maximizing the Use, Value and Impact of Human Samples

Biobanks in the UK have a duty and responsibility to ensure that the human biological samples donated by patients with the intent to forward medical research are in fact doing so. This is proving to be a challenge despite the fact that academic and industry research organisations around the country seek to utilise such samples. Why is that?

use MY data was invited to be part of a panel key stakeholders within the UK biobank landscape, including the UKCRC Tissue Directory and Coordination Centre (TDCC) and Medicines Discovery Catapult and software solution provider,, to discuss these challenges and what they are doing to enable biobanks to increase access in a transparent and compliant manner.

The panel comprised Phil Quinlan, PhD, Director at UKCRC TDCC; Helen Hind, Clinical Samples Manager at Medicines Discovery Catapult; and Richard Stephens, Patient Advocate at use MY data

Matt McLoughlin, VP of Compliance & Categories at hosted the webinar.

A recording of the event is available at



5 Dec 2019 Leeds use MY data Workshop

Say what you do, do what you say - trust and transparency around patient data

This workshop followed our May 2019 workshop "Patient data - balancing access and protection; All talk and no access?" which highlighted the number of organisations who already play a part in the management, access and release of our patient data. The organisations gave specific commitments to improve access to patient data.

Since then we had the launch of the Health Data Research Hubs, charged with a priority to make patient data available for innovative commercial uses. The general focus on commercial use of patient data is increasing significantly. The Office for Life Sciences has ambitious plans to seek new insights about public views on what constitutes a “fair deal” for patients.

Our workshop examined what is happening in all these areas of data access, what do patients think is fair and how informed are the public? We asked how the different custodians of patient data fit together and work together. We also explored which bodies have patient/public representatives sitting on decision-making committees/boards, and examined how they fit together.

The summary report for the event is available here.

The speaker slides from the workshop are available below:

- Views on commercial access to data, Juliet Tizzard, Director of Policy, Health Research Authority
- Previous committments on data access, Richard Welpton, Health Foundation
- Improvements in data access, Garry Coleman, Associate Director, Data Access, NHS Digital
- Update from the Office for Data Release, Public Health England
- A robust health data research infrastructure, Caroline Cake, Chief Operating Officer & Deputy Director, Health Data Research UK

16 Oct 2019 Kings Fund Event Kings Fund Event, London
Kings Fund

Emerging technologies: what does the future of health care look like?

use MY data was invited to be part of a panel of senior experts to assess the promise and dangers of emerging technologies.

The panel explored topical issues at the intersection of AI, data and health care, separating myth from reality and giving practical examples of how emerging technologies might be used.

The event was run by the Kings Fund and ran on 16 October in London.   

use MY data was represented on the panel by John Marsh, Advisory Group member. The panel also included speakers from NHSX and Health Education England.


16 Oct 2019 ABPI Event ABPI Event, London

The ethics and regulation of innovation

The Research, Medical & Innovation and Legal teams at the ABPI ran an event for their regulatory/medical and legal colleagues across our membership.

use MY data was asked to take part in a panel session looking at the regulation of patient data.

The panel comprised:


2 Oct 2019 HETT Conference
HETT Conference, London

Harnessing the potential of patient-generated data to shape population health & genomics

use MY data was invited to take part in the panel session ‘Harnessing the potential of patient-generated data to shape population health & genomics’ at this event.  The event was being run by Healthcare Excellence Through Technology (HETT) and ran on 01 & 02 October in London.   

The panel comprised:

The content discussed was:

The workshop took place on Wednesday, 2 October.


11 Sept 2019 Tissue Workshop
use MY data workshop, London

use MY data campaign - The Issue with Tissue

use MY data is coordinating a campaign to increase the use of tissue samples held in UK biobanks.  As a key part of the preparations for this we organised a small stakeholder workshop, in partnership with the Medicines Discovery Catapult, and facilitated by Incisive Health.  We received a grant from Roche to support the costs of the work. 

The workshop took place on Wednesday, 11 September.

Some details about the campaign and workshop:

Workshop attendees comprised representatives from use MY data, Medicines Discovery Catapult, UK biobanks, the Medical Research Council, the Human Tissue Authority, the Health Research Authority, charities and academia. 

We will publish a report which will be both a summary of the day and a call to action. 


4 Sept 2019 RSS Annual Conference
Royal Statistical Society – Annual Conference, Belfast

use MY data participation

The Data Ethics Special Interest Group of the Royal Statistical Society (RSS) invited us to take part in a session Bridging public understanding of health and data sharing at the annual RSS conference. 

“Until recently professionals and organisations have taken responsibility for regulating ethical health research, protecting patients by requiring informed consent. But in the case of big data, individual project-specific informed consent from each patient for each research project is infeasible. This session will hear from three projects which have been engaging with patients to find out what their views are: their understanding of the nature of use and their enthusiasm for research and discrimination between potential outcomes.  Animation, video and interactive content from engaging patients will be showcased.”

use MY data member Debbie Keatley took part in the session, focussing on The patient imperative to use MY data


16 May 2019 St Giles in the Field, London
The European Health Innovation Collaborative
Visual Minutes

Saving lives & improving treatment - why sharing patient data is good

use MY data took part in this event, which was organised by St Giles Medical. This was the second of these patient-orientated conferences, which this year took place in London on Thursday 16th May 2019.

Our session focused on why sharing patient data is good and included speakers from use MY data.

Details of the event can be found here.

7 May 2019 London
use MY data workshop
Visual Minutes

Patient data - balancing access and protection; All talk and no access?

Patient data saves lives and improves outcomes and yet researchers are struggling to access patient data. This workshop brought together data access bodies - the controllers/guardians of patient data - for a collective discussion.

The aim of the workshop was for the patient voice to help the organisations find solutions.

The agenda for the event can be found here and the summary is available here.

A morning panel presented on the topics of: What data is held about patients? What are the roles, controls and processes for access to this data?

- An introduction to the problem - Richard Welpton, The Health Foundation

- Data Access Request Service (DARS) - Garry Coleman, NHS Digital
- Independent Group Advising on the Release of Data (IGARD) - Kirsty Irvine
- Office for Data Release (Public Health England) - Tariq Malik
- Use of data in research (Health Research Authority) - Janet Messer

My take-away from the day was "how can I communicate clearly why you should trust me to always act in your best interest with your health/data?"

Chief Technology Officer, commercial company

All of the questions I had were answered, plus questions I had not even thought of


An afternoon panel contrasted research data access in the different parts of the UK, including opportunities to learn. Given what has been heard so far, how are the new developments and partnerships in health research going to make a difference? What actions from this workshop do they need to take forward?

- The current UK landscape (Medical Research Council) - Alex Bailey
- Uniting the UK's health data to make discoveries that improve people's lives (Health Data Research UK) - Amanda White

28 March 2019 London
Public event on free-text medical data

Sharing your healthcare data safely – public views on using patients’ medical reports, letters and doctors’ notes for research?

To improve current research using free-text data, we need to find a way to make them more accessible and, simultaneously, to do this in a safe, secure way. Several use MY data members took part in this event which sought to engage all stakeholders to check that safeguards and governance frameworks are trustworthy and meet all the expectations of the public.

use MY data representatives were in the audience, at workshops and on the main discussion panel.

Details of the event can be found here.

13 March 2019 London
Staff Training Event - National Cancer Registration and Analysis Service (NCRAS)

A patient perspective on data collection and usage

A member of use MY data presented at the annual training event for NCRAS staff. The presentation was from a personal perspective, highlighting a personal "data journey", including feedback on what the member found when he examined his own data record.

28 Feb 2019 Leeds
King's Fund Event
Patient Voice

Health and care explained: how the system works and how it is changing

use MY data were taking part in a session within an all-day King’s Fund event – Health and care explained: how the system works and how it is changing.

The event examined how data is used in the NHS (for evaluation, research, improvement, direct care etc.) and how that is changing, along with a brief background on Information Governance, GDPR and the National Data Opt-out.

A use MY data representative talked about use MY data and what we do, giving their views on some of the points above.

The link to the event website is available here

4 Dec 2018 Central London
All Party Parliamentary Group on Cancer

Britain Against Cancer 2018 Patient Voice

use MY data had a joint exhibition stand with Cancer52. Our focus for the day was on "The patient and carer voice", continuing the work of use MY data and Cancer52 in ensuring the voice of people with rare and less common cancers is heard alongside those with the more common cancers.

We used the event to do some short filming of patient views, in partnership with Cancer52. The films will be available shortly.

Fo information, the link to the conference website is available here

22 Nov 2018 Queens Hotel, Leeds use MY data Workshop

The patient voice in the expanding data world

The workshop examined the latest patient data initiatives and how (or whether) the patient voice is being incorporated into these.

The programme featured:

- Do we need opt-outs, active data donation or just a new NHS social contract?
- The Local Health and Care Record Exemplars (LHCRE) programme
- Auditing your own health record - how, what, why?
- GDPR, Common Law, Consent. Where are researchers struggling and how could the patient voice help?

Patient Voice

Delegates heard the latest thinking from experts on different aspects of the uses of patient data. They also heard about some of the challenges and were asked for their thoughts and suggestions throughout the day. The workshop was interactive and discussive and was an opportunity for delegates to feed their views directly into several developing areas.

The workshop was aimed at patients, relatives and carers, the public and professionals. It was open to all who are interested and was free to attend. Expenses were covered for delegates who are patients, relatives and carers.

The workshop agenda is available here.

A summary report of the workshop agenda is available here.

The workshop presentations are available below. Not all presentations are available

Session Session Description
Session 1 Can Data Volunteering, Data Donation and the National Data Opt-out empower citizens to optimise data use? We have organ donation, but not data. Why?

"[Slides not currently available but information and questions on this topic can be directed to Emma Summers, Programme Delivery Lead at NHS Digital to support the development of the strategic options]

Session 2 The Local Health and Care Record Exemplars (LHCRE) programme - The joined up Yorkshire and Humber engagement
Joined Up Yorkshire & Humber - report

Session 3 Auditing your own health record - how, what, why? What is proposed, what are the plans, and how do you get involved?
Session 4 GDPR, Common Law, Consent - where are researchers struggling and how could the patient voice help?


20-21 June 2018 Manchester
PHE Cancer Data and Outcomes Conference 2018

use MY data members attended, sharing a stand in the exhibition hall with Cancer52.

Patient Voice Our joint focus for the event was "the patient voice in data", showing how use MY data and Cancer52 are working together to help ensure the voice of people with rare and less common cancers is heard.

We also used the stand to promote the data animations produced by Understanding Patient Data, which use MY data were part of developing.

We had details on the stand of the launch of a new national award, led by patients/carers, to showcase examples of excellence where data from the National Cancer Patient Experience Survey has been used to drive improvements in patient experience.

Data Citation We encouraged the continued use of the use MY data "data citation", which has been adopted by Understanding Patient Data and which organisations are being encouraged to use.

During the course of the conference we used a graphic artist to produce two illustrations, one per day, on the separate themes of "the patient pathway" and "rare and less common cancers". These illustrations are available for members to use freely.

Meeting Illustration Meeting Illustration

The conference link is available here

2 May 2018 The Kings Fund, London use MY data Workshop

Your data, your control

The workshop agenda is available here.

The workshop flyer is available here.

The workshop, for patients and the public, examined and discussed a range of activities around patient data, including:

- Session 1: Patient data and information - what we know
- Session 2: Primary care preparations for the National Data Opt-out – The Royal College of General Practitioners
- Session 3: Machine-learning and patient inclusion – Microsoft Research
- Session 3: SHERLOC – Microsoft Research
- Session 4: Use my data, use my DNA– Medicines Discovery Catapult

Delegates heard from experts on how patient data is being used, how patients are being involved, what safeguards are in place and, how patients can play a stronger part. 

A summary of the workshop is available here.


26 April 2018 Central London
ABPI Annual Conference

Keynote speech and panel session

use MY data were invited to give a keynote speech at the Annual Conference of the Association of the British Pharmaceutical Industry, followed by use MY data taking part in a panel session. 

Details of the programme are available here.

14 March 2018 Public Health England
ODR Seminar

About use MY data

use MY data were invited to speak to staff by Public Health England's Office for Data Release (ODR)

5 Dec 2017 Britain Against Cancer - London
use MY data session

Primary Care’s pivotal role regarding patients and their data

GPs receive no formal training about data & yet statistics show that GPs are the first point of contact for patients seeking advice about whether to opt in or out of their data being used.

With clinical time constraints, is it actually possible to explain to a patient all of the potential rewards and risks of their data being used?  If it is not possible to explain, how can a patient make a truly informed choice?

The Government’s response to the National Data Guardian’s recommendations about the new National Consent Model state “we will support professionals to implement the national opt-out successfully”.  

Given that the GP practice is one of the main places for patients to have conversations about their health and about the uses of their data, this session will discuss issues such as the lack of training and materials for GP staff and the risk to the continued use of data for analysis and research. 

In this session we heard about what is being done to help GP staff in this area, examined what more needs to be done and how best this might be achieved. Attendees discussed the current status of the proposed National Consent Model and how patients can work with GPs to better understand the rewards and risks of data sharing.

The session summary is available here.

12 October 2017 Patient workshop - London
Commercial uses of patient data

The use MY data workshop, Commercial uses of patient data, took take place on Thursday, 12 October at the offices of Quntiles IMS in London. 

The workshop programme is available here.

The workshop summary is available here.

During the workshop we examined, via a mixture of talks and discussion, the ways in which commercial use is made of patient data. 

Topics included:

- which commercial companies can obtain your data?
- what are the controls around commercial access to patient data?
- what levels of data can commercial companies see?
- what do commercial companies do with patient data?
- how do commercial companies benefit from patient data?
- how does the NHS benefit from commercial use of patient data?

The presentations are available below:

Why do commercial companies need health data
How are patient data used to provide the insights and evidence that the NHS needs to deliver and evaluate services to provide better outcomes for patients?
How does a commercial company support the NHS and pharmaceutical industry in conducting clinical trials and real world evidence studies in disease areas?
How does the pharmaceutical industry use patient data (part 1)? [slides were only approved for single use presentation and not distribution]
How does the pharmaceutical industry use patient data (part 2)?
What steps does a company need to go through to be able to access patient data? [awaiting slides]
Openness and transparency - could it be improved? What do patients want?

13, 14 June 2017 PHE Cancer Data and Outcomes Conference - Manchester
use MY data at the PHE Cancer Data and Outcomes Conference

The conference provided a national focus for access to patient data.  It explored how data is being used across the patient pathway, from prevention, early diagnosis and treatment through to patient experience, quality of life and patient outcomes.

use MY data took part in two sessions:

Tuesday, 13 June, 1625 to 1730
Working with data workshop 2: Driving the data decisions: How patients and the public can set the direction

Delegates :

- heard recent examples of data activity where patients and the public have been equal partners or in the driving seat
- discussed and suggested other ways patients and the public can be involved
- learnt about new opportunities to work with a range of organisations

Wednesday, 14 June, 1345 to 1500
Data - How can patients make an informed choice if we can't inform them?

We now have between 1 and 2 million people who have "opted out"of having their data shared outside of their direct care. They made a choice. But with so much emphasis on choice being "informed", exactly how well informed were patients when they made that choice?

A workshop took place in January 2017, organised by use MY data, to bring together a panel of GPs with cancer patients, some of whom had opted out of, and some who had not.

The questions posed were:

1) When "hit", what did the GP community have available by way of briefing, and what did they know (or find out) about patient data, so that they could advise any patient who asked?

2) if a patient were to ask the same question (about data usage) tomorrow, is the GP community any better equipped to answer the question, so that patients can make a fully informed choice.

Not unexpectedly, the GP community felt ill-equipped to cope with the questions asked of them by patients about data usage when was announced. However, there seems to have been little or no improvements in equipping the GP community with additional information, balanced assessments of risks and benefits, and other facts to allow them to advise any of their patients about data usage.

Any choice is complex. Given the clinical time constraints, is it actually possible to explain to someone all the secondary uses of their data, the potential risks and the major benefits that can be accrued for such data usage? And if it is not possible to explain, how can any patient make a truly informed choice?

The findings from the workshop, together with follow up actions and feedback from primary care and patients, and recommendations, were presented and discussed with the audience.

9 May 2017 Patient workshop - London
Patient data and tissue samples - benefits, barriers and concerns

This workshop, jointly organised by UKCRC, ICPV, CM-Path and use MY data, examined and discussed:

- Tissue samples and the data pathway
- Current governance and what it could/should be
- Consent including dynamic consent versus broad consent
- How the use of data might influence the decision to donate

Delegates heard from pathologists, patients, researchers and governing bodies. Via a mixture of talks, questions & answers and debate, we examined the benefits of and barriers to donating tissue.

The workshop was aimed at patients, the public, researchers, biobankers and charities, but was open to all who are interested.

The flyer is available here.

The summary from the workshop will be available shortly. The slides are available below:

My pathway through research, tissue and data donation
The pathologist in the sample to data pathway
Epigenetics in Breast & Ovarian Cancer
Using and disclosing confidential patient information and the English common law: what are the information requirements of a valid consent?
Public dialogue on consent for tissue and linked patient data
Consent and the Human Tissue Authority

26 Jan 2017 use MY data workshop - London
The patient voice - who is listening?

This workshop examined the role of the patient voice in relation to patient data, examining how influential the patient voice could and should be.

- Can patients control how their data are used?
This session examined existing initiatives where patients lead on the use of their data and the impact of this. It looked at potential initiatives where patients want to lead on the use of their data and the potential impact for research and outcomes.

- The media & patient data: is the patient voice heard?
Via an expert panel this session presented balanced perspectives about the role of the patient voice in the media. We examined how influential the patient voice could be, why it is not heard at the moment and how a more balanced media view of the uses of patient data could be achieved.

- Primary care & data collection: the impact on the GP & the patient
After an overview highlighting the current issues affecting primary care and data collection, we heard from GPs about how this currently feels in primary care and the ways in which conversations with patients are approached, or why they are not approached. In turn we aimed to provide a balanced patient perspective & voice to aid GPs.

The agenda is available here.

The workshop summary is available here.

Why seeing my cancer registration record is important, what I found & why this could be important to others
Other options for linkable lifestyle data – what about your supermarket loyalty card? What sort of insights could be gained & who would benefit most?
My data in the Health Bank initiative – why it’s there and how does the health bank want to use it

6 Dec 2016 Britain Against Cancer - London
use MY data/ICPV workshop

Patient data – why & how it should be used more effectively - a call to action
This session will set out a proposal for how the patient community can drive the data agenda, so that patient data is collected and used in the most effective way. 

The session will examine how easy this could be if current & proposed barriers were removed, alongside looking at the safeguards that would need to be in place.  It will do this by examining patient led initiatives and using examples from the devolved nations. 

The session will clearly demonstrate why politicians, the NHS and the public should be accountable to patients and listen to the patient voice.

use MY data / ICPV workshop details available here.

Workshop flyer available here.

20 Sept 2016 Patient data workshop - London
Who uses your data?

To explore who uses patient data, why they use it and the benefits and risks of its use.
To present the balanced argument for using data, hearing from data privacy campaigners and patients who want their data to be used.

Speakers included prominent data privacy campaigners, discussions around the insurance industry and representatives from the pharmaceutical industries.

Agenda available here

Review of Informed Consent for Cancer Registration, CRUK & Macmillan
Independent Patient Data Taskforce, Wellcome Trust
Update on the National Data Guardian’s Review and consultation, including the views of patient advocates / questions and answers
Consensual, Safe and Transparent? How privacy protections encourage data use (no slides used)
Public attitudes to commercial access to data
Patient data and the pharmaceutical industry
How can/should the media present a balanced view of patient data?

13, 14 June 2016 Cancer Data and Outcomes Conference, Manchester 
To provide a national focus for access to patient data, with media engagement.  

To hear about the rewards of data use. Organised by the PHE National Cancer Registration and Analysis Service, and in collaboration with the UK & Ireland Association of Cancer Registries. 

This conference is renowned for its high inclusivity of active patient voices. Patient bursary places are available, and the use MY data team will be at the event and taking part in plenary and parallel sessions. 

In previous years you may have known this as the NCIN Annual Cancer Conference. To examine areas where new academic insight needs to be developed, utilising ‘big data’ techniques Presentations are now available here 21 April 2016 National Consent Model workshop, London
To provide background information, updates and balanced perspectives on the National Consent Model and its implications for data collection and research.

To aid patients and charities in responding to the consultation

Workshop Summary Report available here
Agenda available here

Why the USE of cancer data is so important, and why the current model is so valuable
Cancer registration – how will it change if consent is needed?
Routes to Diagnosis reimagined [Slides withdrawn]
The devolved nations and England – contrasting approaches to patient consent
How patients are currently informed. Using patients’ experiences to define how new patients could/should be informed?

11 February 2016 Data workshop, London To follow up from the 29.09.15 data workshop, providing information on a range of data issues (requested after the workshop and via the use My  data working group).

To aid those who wish to promote the use of their data for research
Download the agenda here

How patient data is used in London
Benefits for cancer patients - now and in the future
Consent, the law and Caldicott
The four devolved nations
EU directoves and the UK
Primary care data
Changing the public's perception of data access - Media engagement

8 December 2015 Championing a research focused NHS: How should we best use patient data?  To explore the current landscape for the use of data in research in the NHS - and the rules in place around access. 

To generate solutions for how cancer patients, charities and politicians can support the organisations entrusted with our medical records to strike the right balance between protecting confidentiality and enabling effective and timely research. 3 November 2015 Involving patients in the use of their data. 

Lunchtime session hosted by the NCIN & CRUK
NCRI Cancer Conference, Liverpool To bring together the patients whose data is held, with the researchers who need access to this data to drive improvements in diagnosis, treatment, care and outcomes.

To explain the difficulties in getting access to data for research, including what has stopped, and where we are now.  

To explore ways in which the patient voice can to help unblock these difficulties. 

To describe and help plan a wider programme of activities aimed at education for, involvement of and support from patients for the usage of their data to save and improve lives. 29 Sept 2015 Data workshop, London To help increase the understanding of the collection, ownership and use of cancer patient data, as well as looking at data protection and data access.  

To aid those who wish to, to promote the use of their data for research.
Download the
agenda here

A brief history of cancer registration
Risks and rewards of data use
The Data Protection Act
Who can access your data and how?

29 July 2015 Donate Your Data Working Group meeting, London To discuss the aims and methods of Donate Your Data and develop a strategy, addressing patient involvement in data release, recruitment, communications and advocacy. 8 June 2015 NCIN Dragons Den
Cancer Outcomes Conference, Belfast To launch Donate Your Data (the forerunner to use MY data).

To explain the concept, obtain the reactions and help of patients to develop the idea and sign up members. <-- -->