#ProtectPatientsData - Twitter Hashtag

almost 6 years ago

No consenting patients on way into operating theatre or when under pre op meds. Patients should have to explicitly consent when data is being transferred to 3 party commercial company who will then own the data stream #ProtectPatientsData #SellingOurGenes @noteworthy_ie 3/n

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Eileen OS @eosull

about 6 years ago

#ProtectPatientsData #InformedConsent #CancerResearch 👇👇👇

Róisín Shortall @RoisinShortall

about 6 years ago

The deadline to opt-out of the Beaumont/Genuity Science Brain Tumour Research Study is this coming Monday. To opt-out, email [email protected].

RoisinShortall's tweet photo. The deadline to opt-out of the Beaumont/Genuity Science Brain Tumour Research Study is this coming Monday. To opt-out, email btis@beaumont.ie. https://t.co/bmejWRkmpE

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Eileen OS @eosull

about 6 years ago

@DPCIreland - all this time patients data is being potentially compromised. Is there an outcome to this compliance and supervision examination or when it is likely? @RoisinShortall @DonnellyStephen @paulreiddublin #GMI #GenuityScience #ProtectPatientsData #MyDataMyChoice

Privacy Kit @PrivacyKit

about 6 years ago

@klillington It is *ten months* since the DPC told @DRIalerts it had "commenced a “widespread compliance and supervision” examination" of GMI/Genuity. Since then, tumbleweed while the DNA data harvesting continues apace. https://t.co/MFeiv2dQJU

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Eileen OS @eosull

over 6 years ago

Patient advocates have these and other concerns, however they are not being taken on board, acknowledged or addressed by @HRCDC_Ireland patient trust is imperative for #CancerResearch #ProtectPatientsData @KayCurtin1 @ramonwhelan @McLoughlinSarah @IrishCancerSoc

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Eileen OS @eosull

over 6 years ago

@Tupp_Ed @Ash_OLeary @klillington Is it also accurate that patients cannot (and blood relatives) cannot be identified? That is not what current research indicates and the real value of this data is using with the associated clinical data of the patient @HRCDC_Ireland #ProtectPatientsData @IrishCancerSoc

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Eileen OS @eosull

almost 7 years ago

@sheilaghosh @stage4kelly @EU_Commission @borstkanker Research of this nature is possible with explicit informed consent and patients should be fully aware of potential risks of sharing their genomic data,not just for themselves but for their wider family members now and in the future #ProtectPatientsData #GDPR #MyDataMyChoice #BRCA

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