
Research in Complex Rare Diseases - Exemplars in Rheumatology @DrFiona_Pearce @lanyon_peter @meganlizi #rarediseases
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ALT Survey results for the question "do you think that you have a choice over whether the NHS can use your health data for each purpose? Individual care 41% yes 38% no 21% don't know Research 42% yes 36% no 23% don't know Planning 32% yes 44% no 25% don't know Population health 34% yes 42% no 25% don't know

ALT Survey results for the question "does it matter to you whether the data used for planning and population health is de-identified or identifiable?" Yes, I strongly prefer de-identified 29% Yes, I somewhat prefer de-identified 25% No, I have no preference 29% Yes, I somewhat prefer identifiable 9% Yes, I strongly prefer identifiable 4% Don't know 5%

ALT Survey results for the question "Should the NHS have access to people's data automatically for planning and population health purposes?" Yes, only de-identified 35% Yes, both identifiable and de-identified 30% No, the NHS should not have automatic access to my data for planning 19% Yes, only identifiable 8% Don't know 8%

ALT Survey results for the question "Do you support any of the following exceptions to your ability to opt-out from sharing your data for research and planning purposes?" Using patient data to monitor and control a risk to public health 78% support Delivering and monitoring vaccination programmes 76% support Fully anonymised data is used 75% Your data is part of an investigation into a healthcare provider 72% There are public interest reasons why you cannot opt out 67% The sharing of patient data is required by law or court order 62%





















