Citizen Data Identity Partnership (CDIP)

EPSRC funded collaboration between Universities of Manchester & Lancaster. Goal: Create a platform for patients and clinicians to test digital health solutions

[Citizen Data Identity Partnership (CDIP) @CDIP_research]

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

[PharmaLedger Association @PharmaLedger]

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.

https://t.co/85b7AfI9RG

[Citizen Data Identity Partnership (CDIP) @CDIP_research]

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

[Citizen Data Identity Partnership (CDIP) @CDIP_research]

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

[Citizen Data Identity Partnership (CDIP) @CDIP_research]

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

[Citizen Data Identity Partnership (CDIP) @CDIP_research]

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

[Citizen Data Identity Partnership (CDIP) @CDIP_research]

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

[Open Data Manchester @opendatamcr]

Can collectives manage data better? How to Build a Data Cooperative 30/3 with @KapoorAstha from @aaptiinstitute, @hayswitt from @DriversSeatCoop, @Julianlstar and chaired by @AnoukRuhaak https://t.co/mKdpCEbWsx

[Citizen Data Identity Partnership (CDIP) @CDIP_research]

"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

[Citizen Data Identity Partnership (CDIP) @CDIP_research]

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

[Citizen Data Identity Partnership (CDIP) @CDIP_research]

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

[Citizen Data Identity Partnership (CDIP) @CDIP_research]

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

[Understanding Patient Data @Patient_Data]

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 💬

https://t.co/s0xMX6romn

[Transforming health and care @NHSTransform]

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: https://t.co/3u37e8fUI0

[Citizen Data Identity Partnership (CDIP) @CDIP_research]

"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👇 https://t.co/CVWGR6UoBi
#datasaveslives #patientengagement #datasharing

[Citizen Data Identity Partnership (CDIP) @CDIP_research]

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
https://t.co/UBhrRILX9e

[Citizen Data Identity Partnership (CDIP) @CDIP_research]

Thank you! 😁👏🎉

[Understanding Patient Data @Patient_Data]

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 📨[email protected]