A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis
|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.