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

use MY data events

"There is no data about us, without us, so use our data to help us, and all the other cancer patients who will be coming in the future."

Patient advocate, use MY data

Date Item/Event Aims
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.

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

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

The workshop programme is available here.

The workshop summary is available here.

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

Topics included:

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

The presentations are available below:

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

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

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

use MY data took part in two sessions:

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

Delegates :

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

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

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

A workshop took place in January 2017, organised by use MY data, to bring together a panel of GPs with cancer patients, some of whom had opted out of 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
The pathologist in the sample to data pathway
Epigenetics in Breast & Ovarian Cancer
Using and disclosing confidential patient information and the English common law: what are the information requirements of a valid consent?
Public dialogue on consent for tissue and linked patient data
Consent and the Human Tissue Authority

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

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

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

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

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

The agenda is available here.

The workshop summary is available here.

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

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

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

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

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

use MY data / ICPV workshop details available here.

Workshop flyer available here.

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

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

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

Agenda available here

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

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

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

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

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

To aid patients and charities in responding to the consultation

Workshop Summary Report available here
Agenda available here

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

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

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

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

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

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

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

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

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

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

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

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

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

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