|20 July, 2023|| |
Breaking Barriers, Building Community: Exploring DARE UK Community Groups
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.
|13 June, 2023|| |
Metastatic Breast Cancer Conference
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.
|8 June, 2023|| |
use MY data & Westminster Health Forum
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 developments. They 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.
|30 March, 2023|| |
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:
The webinar summary and recording are available here.
|16 March, 2023|| |
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.
|14 December, 2022|| |
Health Data Research UK Scientific Conference 2022: Data for global health and society
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.
|20 October, 2022|| |
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.
|13 October, 2022|| |
TechBio UK 2022, London
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:
|27 September, 2022|| |
use MY data Webinar: Does the NHS sell my data?
“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
Michael Chapman – NHS Digital
Claire Bloomfield & Kelly Lin – NHS England
Phil Booth – MedConfidential
David Ford – SAIL Databank
Roger Halliday – Research Data Scotland
Vicky Chico – Office of the National Data Guardian
Geoff Hall – Leeds Teaching Hospital Trust
The recording and summary of the webinar are available here.
|13 September, 2022|| |
Educational “Drop in” session
Date: Tuesday, 13 September 11.00 – 12.00
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.
|15 July, 2022|| |
use MY data Educational “Drop-in” Session
Date: 15 July 2022, 13.00-14.00
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.
|17 June, 2022||Events|| |
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.
|11 May, 2022||Event|| |
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.
|29 April, 2022|| |
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.
|22 April, 2022||Online|| |
use MY data - What does your health data actually look like? Educational “Drop-in” Session
Date: Friday 22 April, 10:00 to 11:00
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 https://www.usemydata.org/events.php ), 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.
|30 March, 2022|| |
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.
As with all our events, the webinar was free to attend. A short summary and the webinar recording is available here.
|16 March, 2022|| |
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:
|24 February, 2022||Online|| |
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.
|29 November, 2021||Webinar|| |
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 https://precisionmedicineforum.com/our-conferences/patient-week/. Details of the programme will be available shortly.
|8 November, 2021||Virtual|| |
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
|8 October, 2021||Billesley|| |
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.
|21 June, 2021||Event|| |
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.
|16 June, 2021||Webinar|| |
Trust and transparency: GP Data for planning and research
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.
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.
|25 May, 2021||Webinar|| |
A researcher's journey to accessing patient data
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.
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.
|10 March, 2021||Webinar|| |
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:
Thursday, 11th March, 14:00 - 15.00
"Putting our Faith in Technology"
The speakers were:
|3 March, 2021||Webinar|| |
Show me my data!
Wednesday, 3rd March, 10:00 - 11.30am
The recording and summary are now available here.
If you would like further information about any of our webinars please contact Emily Boldison
|24 February, 2021||Event|| |
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:
Our speaker was use MY data member, Debbie Keatley.
|8 February, 2021||Event|| |
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
Approaches to adopting Personalised Health Records (PHRs): Empowering patients to manage their care and data
Establishing a patient centric approach to managing 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”.
|10 December, 2020|| |
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 firstname.lastname@example.org
Our policy on the use of Zoom for our webinars is available here.
|25 November, 2020|| |
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 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 email@example.com
Our policy on the use of Zoom for our webinars is available here.
|30 October, 2020||Virtual Event|| |
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
The conference website is https://ai-med.io/all-events/global-summits/uk-2020/
|9 September, 2020||Webinar|| |
The COVID-19 exit strategy - what next for patient data?
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.
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.
Our policy on the use of Zoom for our webinars is available here.
|8 June, 2020||Webinar|| |
Ada Lovelace Institute - Ethics & Society Stage @ CogX
Monday, 8 June, 2020
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.
|28 May, 2020||Webinar|| |
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.
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:
The briefing, slides and recording of the webinar are available here.
Our policy on the use of Zoom for our webinars is available here.
|22 April, 2020||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, Scientist.com, to discuss these challenges and what they are doing to enable biobanks to increase access in a transparent and compliant manner.
Matt McLoughlin, VP of Compliance & Categories at Scientist.com hosted the webinar.
A recording of the event is available at https://biobankinguk.org/webinar-debrief/
|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
|16 Oct 2019||Kings Fund Event||Kings Fund Event, London
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
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
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.
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?
- Data Access Request Service (DARS) - Garry Coleman, NHS Digital
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?
|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
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
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?
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
|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.
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.
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.
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
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.
|14 March 2018||Public Health England
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.
During the workshop we examined, via a mixture of talks and discussion, the ways in which commercial use is made of patient data.
- which commercial companies can obtain your data?
The presentations are available below:
Why do commercial companies need health data
|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
- heard recent examples of data activity where patients and the public have been equal partners or in the driving seat
Wednesday, 14 June, 1345 to 1500
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 care.data, and some who had not.
The questions posed were:
1) When care.data "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 care.data 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
|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?
- The media & patient data: is the patient voice heard?
- Primary care & data collection: the impact on the GP & the patient
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
|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
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.
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
|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
|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
|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
|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.