1. 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.
@usemydata
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2. 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.
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3. 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, includes:
the rewards of cancer data - highlighting how the use of data has changed practice for the better
cancer data frequently asked questions
a library of patient stories comprising videos of patients talking about their data & case studies transcribed from these
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.
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4. 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.
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5. 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
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6. Funding
use MY data strives to be an independent patient voice and, to this end, has always received financial support from a range of funders, rather than one organisation.
Financial support is currently received from:
Leeds Institute for Data Analytics.
Previously, use MY data has received financial support from:
Cancer Research UK
National Cancer Intelligence Network, Public Health England
Macmillan Cancer Support.
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7. 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.”
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