Case studies
Highlighting and acknowledging the contribution of patients to research.
The Patient Data Citation
The challenge The use of patient data in research not being acknowledged by researchers. The value and benefits of using patient data not sufficiently understood by patients and public.
The use of patient data is essential for research and analyses that will save lives and improve outcomes in the UK through optimising the care and treatment of individuals and by discovering new or improved therapies. From the outset, Members of the newly formed use MY data wanted to highlight the benefits of sharing our patient data and for its use to be acknowledged by researchers.
Overview
use MY data Members created the Patient Data Citation to communicate the message that research and analyses are underpinned by patient data:
“This work uses data provided by patients and collected by the NHS as part of their care and support”
Members campaigned for the citation to be included in all published research that uses patient data: to recognise the patient contribution, to acknowledge how and to what purpose patient data has been used and to highlight the value and benefits of using patient data.
The solution
If you use (our) patient data, please acknowledge it. use MY data encourages everyone who uses patient data for their research to adopt and promote the Citation in all their research reports and publications.
The Citation has been widely adopted across academic institutions, commercial organisations, national bodies and research charities. These include HDR UK, Medical Research Council, National Disease Registration Service (England), National Institute for Health and Care Research, National Joint Registry, Office for National Statistics, Understanding Patient Data, Welsh Cancer Intelligence and Surveillance Unit.
If you come across an organisation using the Citation, please let the Secretariat know, so that we can promote this – contact@usemydata.org.uk
Where an organisation is using patient data without acknowledging the source of the data, please bring the Citation to their attention and/or let the Secretariat know contact@usemydata.org.uk
Supporting the Citation
Our Stance on Transparency
The challenge
Transparency should underpin all aspects of using our patient data – this is essential to maintain and develop the trust and support of patients and public.
A lack of transparency around the use of patient data has at times resulted in:
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Beneficial data linkage programmes being stopped
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Vital research being halted
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Patients opting out of their data being used – reducing the value of datasets.
Overview
Say what you do, do what you say!
To build confidence in the use of patient data for research and analysis, use MY data has developed a set of guiding Transparency Principles.
Transparency means operating in such a way that it is easy for others to see what actions are performed.
All aspects of using patient data should be:
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Accessible – easy access to information
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Understandable – the right language for the audience
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Relevant – addresses audience concerns
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Useable – in a form that meets the audience needs
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Assessable – is checkable/provides sufficient detail
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As pro-active with ‘bad news’ as with ‘good news’
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Timely with communications.
The solution
We have campaigned to spread the message of our Transparency Principles, resulting in them being adopted by many research organisations. They form a key part of our engagement criteria with external stakeholders.
Supporting the campaign
The Issue with Tissue
A call to action to increase the usage of donated tissue samples for research
The challenge
Access to donated tissue samples is not working for researchers, clinicians or patients in the UK.
Overview
At a public workshop hosted by use MY data in May 2018, Members learned that only 15% of tissue samples donated for research are used.
Members were concerned about the practical difficulties faced by researchers trying to access samples and data and wanted to play a role in enabling appropriate research.
“There is a responsibility for those holding information to do something with it, because nobody wants to give their data, or their samples, and then nothing happen with it”
Patient Advocate, use MY data
The solution
use MY data developed a joint campaign with Incisive Health and the Medicines Discovery Catapult. The group facilitated a workshop in 2019 that identified ten key actions to increase the use of tissue samples and thereby increase opportunities for research.
One action was for use MY data Members to choose a citation that would acknowledge the use of patient samples in research and highlight the beneficial uses of donated tissue. Subsequently, Members chose the Tissue Citation –
"This research was possible only because patients have donated their tissue"
The campaign’s report The Issue with Tissue - recommendations for improving the use of human tissue samples is intended as an aid to action.
The outcome
Patient advocates are driving change by campaigning for their tissue to be used to help the next generation. “When I donate my tissue, I am not simply giving consent, I am giving an instruction: Use my tissue to benefit others!”
Supporting the campaign
use MY data continues to campaign for increased use of donated tissue samples. During the Covid-19 pandemic the work of Tissue Access for Patient Benefit (TAPb) highlighted the need for samples to be used and access coordinated.
Covid-19 hindered our follow-on engagement work, so did a lack of dedicated funding for the campaign. We are keen to resume this work and would welcome contact with those interested in being part of this effort from all parts of the research community. If you are interested, please let us know – contact@usemydata.org.uk
If you come across an organisation using the Tissue Citation, please let the Secretariat know, so that we can promote this – contact@usemydata.org.uk
Where an organisation is using patient tissue without acknowledging the source of the data, please bring the Tissue Citation to their attention and/or let the Secretariat know – contact@usemydata.org.uk