use MY data use MY data is a movement for patients; it aims to build confidence in the use of patient data for analysis and research. Timely access to data is needed to drive improvements in: the prevention of cancer and standards of cancer care clinical outcomes and experience for cancer patients. use MY data will increase the involvement of patients in decisions about how their data is used and in communicating the importance of this work. The movement began as a movement for cancer patients, but is widening to include patient advocates from all disease areas. getinvolved@usemydata.org.uk www.useMYdata.org.uk use MY data Version_111016

use MY data aims to improve the experiences of, and outcomes for, current and future patients by: Building knowledge and understanding amongst cancer patients and the wider public about how use of their health data can improve outcomes for the future. Involving cancer patients in decisions about how their data are used and sharing the details of these to build patient and public confidence in this work. Demonstrating patient support for the use of data, to increase the confidence of the large health bodies that provide and use patient data. By doing this, ensure that researchers and analysts have timely access to data needed for their research so that essential cancer research continues and is not halted for lack of access to data. use MY data Version_111016

use MY data Methods Communications Involvement and advocacy An on-going programme of data focussed events to further understanding of data. Presence of use MY data at key cancer conferences to build on and promote the movement. Work with the media to promote a positive view of data access and release and provide balance to the current negative view. Continue to work on: illustrating the costs of not using data, through examples of research projects that have been terminated because of lack of data access. a ‘how is your data spent’ breakdown (similar to a charity’s breakdown of ‘how is your money spent’). The use MY data website, www.usemydata.org.uk, includes: the rewards of cancer data - highlighting how the use of data has changed practice for the better cancer data frequently asked questions a briefing pack that can be widely used by enthusiasts & ambassadors to spread the message. Involvement and advocacy Advocate for patient representation on all committees making decisions about how patients’ data are used for analysis and research. Work to make the citation of patient data on all publications using cancer data a condition of use, to track how the data has been used and acknowledge the patient contribution. Consider the value of exploring one’s own patient data & how this might be used to strengthen the movement. use MY data Version_111016

use MY data Events – 2016 Date Item / Event Aims Version_111016 06 December Patient data – why & how it should be used Session hosted by use MY data & Independent Cancer Patients’ Voice Britain Against Cancer, London To 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.    To illustrate how easy this could be if current & proposed barriers were removed, alongside looking at the safeguards that would need to be in place.  We will do this by examining patient led initiatives and using examples from the devolved nations.  To clearly demonstrate why politicians, the NHS and the public should be accountable to patients and listen to the patient voice. 20 September Data workshop London 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. 13-14 June Cancer Data and Outcomes Conference: Using data to drive services Manchester To provide a national focus for access to patient data, with media engagement. To hear about the rewards of data use, by highlighting how cancer data is improving the prevention, diagnosis, treatment and outcomes of cancer in the UK and beyond To explore how data is being used to drive services both locally and nationally. 21 April National Consent Model workshop 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. 11 February 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. use MY data Version_111016

use MY data Events – 2015 Date Item / Event Aims Version_111016 08 December Championing a research focused NHS: How should we best use patient data? Parallel session hosted by CRUK, ICPV & the NCIN Britain Against Cancer, London 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.  03 November 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 September 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 29 July Donate Your Data Working Group meeting To discuss the aims and methods of Donate Your Data and develop a strategy, addressing patient involvement in data release, recruitment, communications and advocacy. 08 June 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. use MY data Version_111016

use MY data use MY data members & associates Members use MY data members are patient advocates who believe that their patient data should be used to improve outcomes for future patients The majority of members are cancer patient advocates. Membership is open to all patients and there are a small number of members with illnesses other than cancer. Associates As well as the patients advocates who comprise the use MY data group there is a circulation list for those interested in the work and development of the group - associates of use MY data. This ensures that all interested parties are kept up to date and have the opportunity to input into the movement. Associate members of use MY data comprise charity workers, academics, researchers, and public sector workers. use MY data Version_111016

use MY data Support & links use MY data was established in 2015 by the National Cancer Intelligence Network, with the support of Cancer Research UK. use MY data supports use MY data is supported by use MY data Version_111016

ACHIEVING WORLD-CLASS CANCER OUTCOMES: A STRATEGY FOR ENGLAND 2015-2020 – July 2015 “An inability to link data sets and make these available to providers, commissioners and researchers sustains the provision of sub-standard care. There is extensive evidence that cancer patients want their data to be used for research and to improve care. We must harness their support, ensuring cancer patients are placed at the heart of strengthening our cancer data intelligence.” use MY data Version_111016