use MY data is a movement of patients, carers and relatives
use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes.
use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all.
use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.
Upcoming events
Date | Location | Details and registration |
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8 Feb 2021 | Event | The HETT (Healthcare Excellence Through Technology) Reset 2021 conference takes place from Monday, 08 February to Friday, 12 February online. The conference is called Stronger, Together: Uniting the digital health ecosystem to accelerate transformation and improve services and patient care. use MY data has been invited to participate and we are taking 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 registration are here. The conference is free to attend for “those working in the NHS, independent healthcare provision, the care sector, and the wider public sector”.
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10 December, 2020 | Webinar | Bringing the panel back togetherThursday, 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 emily@usemydata.org.uk Our policy on the use of Zoom for our webinars is available here. | ||||||||||
25 November, 2020 | Webinar | Secret Garden or Open Landscape – Views on Trusted Research EnvironmentsWednesday, 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 emily@usemydata.org.uk Our policy on the use of Zoom for our webinars is available here. | ||||||||||
30 October, 2020 | Virtual Event | Delivering patient-driven innovationFriday, 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 @ CogXMonday, 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. Panellists
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 | 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, 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/
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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 |
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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.
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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:
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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.
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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.
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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.
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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. |
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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. 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 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
Delegate
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 |
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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. |
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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. |
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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 |
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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 |
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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
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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.
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.
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 |
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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.
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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.
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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) |
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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. |
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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. Programme 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? The presentations are available below:
Why do commercial companies need health data |
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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 Delegates : - 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. https://www.phe-events.org.uk/hpa/frontend/reg/absViewDocumentFE.csp?documentID=11399 |
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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 |
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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 |
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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. |
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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
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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 |
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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 |
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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 |
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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. |
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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. |
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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 |
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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. |