Citizen Data Identity Partnership (CDIP)

What do you think about access & control of personal health data? Would you like to inform the function & design of our citizen data platform? Get involved! Pls RT #datasaveslives #patientengagement #healthdataresearch

Is the tradeoff between sharing their health data in exchange for potentially life-changing solutions worth it? With #blockchain, we have the potential to bridge this gap between #dataprivacy and #healthcare. pharmaledger.eu/news/pharmaled…

Further research and experimentation of financial & business models for #datacooperatives is critical. @KapoorAstha very insightful comments at @opendatamcr #datasaveslives

Consent for data sharing needs to be an ethical process rather than a legal one. Interesting insight on the Carbon Cooperative from @Julianlstar @opendatamcr #datagovernance #datacooperative #datasaveslives

Data Cooperatives seem to be the most realistic and feasible of all of the data stewardship models considered, particularly because of the social accountability required @opendatamcr #datacooperatives #datastewardship

Multiple models that can harness the collective powers of data & address that power imbalance in the data economy. Super interesting @opendatamcr #datastewardship #datacooperatives

Looking forward hearing about how to build a data cooperative shortly @opendatamcr #datasaveslives

"I am personally open to new technologies and sharing data if it benefits me and other patients, the NHS and scientists" Read our third blog post from our #publicengagement focus groups on control & access to #healthdata. #datasaveslives #BlockchainTechnology

Communication is key and is context dependent, when engaging with the public on the use of health data for research #KFOnline #datasaveslives @HeRC_Tweets @CHCNorth

Agreeing on what the most important research questions are, when using health data, must involve the public at every stage. #KFOnline #trust #transparency #healthdataresearch

How can we ensure the public supports data sharing? Interesting discussion happening now on trust and transparency in healthcare by #KFOnline #datasaveslives #heathdataresearch

The language used to discuss patient data is often complex & confusing 😵 So we did some research to find the best words to explain patient data in a way that's accurate & accessible 💬 understandingpatientdata.org.uk/what-are-best-…

Thanks to everyone who attended today’s virtual launch event for the Digital Technology Assessment Criteria. If you’re a developer or buyer of health and social care digital tech, find out about the DTAC on our website: nhsx.nhs.uk/key-tools-and-…

"Patients have a right to have their data stored in a way that protects it from investigation by anyone without the patients’ permission" Read another one of our focus group participant's reflections here👇 bit.ly/3dDOh7K #datasaveslives #patientengagement #datasharing

Read our latest blog post, written by one of our focus group participants to provide their experience on engaging in the conversation on health data research. #datasharing #healthdataresearch #datasaveslives #blockchaintechnology #EPSRC #publicengagement cdip.lancs.ac.uk/index.php/2021…

Thank you! 😁👏🎉

Hello social research agencies with experience in health/ data 👋 We’re going to do some research to understand primary health care professionals’ views and expectations around the use of patient data. Interested? Drop us an email at 📨hello@understandingpatientdata.org.uk