1. use MY data is a movement for cancer 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 - 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. use MY data was established by the National Cancer Intelligence Network, with the support of Cancer Research UK. To become involved or to obtain more information, please email getinvolved@usemydata.org.uk Version_080316

2. - 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. Version_080316

3. Communications - An on-going programme of data focussed events to further understanding of data. - Presence of use MY data at key cancer conferences to promote and build 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 will be live by Easter 2016. It will include: 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. Version_080316

4. DateItem / EventAims 11 FebruaryData 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. 21 April (date TBC) National Consent Model workshop London It is hoped that the workshop will take place during the consultation period for the National Consent Model. 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. 13-14 June & 15 June National Cancer Intelligence Network Conference & Farr Institute event Manchester To provide a national focus for access to patient data, with media engagement. To hear about the rewards of data use. To examine areas where new academic insight needs to be developed, utilising ‘big data’ techniques TBCPatient record access session Leeds To examine data quality in detail, via people’s own experience of accessing their records. To strengthen patients’ knowledge of their data and use this knowledge to inform their work within the patient data movement. Version_080316

5. DateItem / EventAims 08 JuneNCIN 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. 29 JulyDonate 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. 29 SeptemberData 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 03 NovemberInvolving 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. 08 DecemberChampioning 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. Version_080316

6. “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.” Version_080316