Care data against

Care data against

• 1.
  Why the NHS CareData Programme should not proceed as currently planned Aminpour Amelia Jem Mirjam Dickie Claire Trevor Miranda Johari Alia Chen Wenjia Lahiri Shaon Sandu Meda Nowlan Naomi Cox Hannah
• 2.
  Background  The CareData Programme is designed to ensure that commissioners have access to a dataset that contains linked information from all GP practices and all hospitals.  NHS can use this information to get a complete picture of what is happening across health and social care and to plan services.
• 3.
  Informed Consent vs.Implied Consent Informed Consent: o o o permission obtained from a patient to perform a specific test or procedure written in a language understood by the patient and be dated and signed Voluntary, and obtained before certain procedures Implied Consent: o o Is Agreement by a patient to allow disclosure of private health information A granting without formal agreement, e.g. a patient’s appointment with a physician the current publicity campaign sufficient to gain consent?
• 4.
  Privacy No way forthe public to work out who has their medical records or to what use their data will be put …
• 5.
  Privacy  The extractionof personal confidential data into the HSCIC  Patients may feel a loss of individual autonomy (no patient consent)  The processing of the personal confidential data when held by the HSCIC  Threats associated with ‘cyberspace’ such as hackers attempting to access the data illegally  The onward of disclosure of data from the HSCIC  Risks of jigsaw attacks increase as more effectively anonymised data are made available
• 6.
  DP Act vs.HSC Act Data Protection Act GPs have duty not to share information o Could see potential legal action from patients if practices dont take “reasonable steps” to inform them. Health & Social Care Act o  o GPs have statuatory obligation to provide data to Health & Social Care Info Centre
• 7.
  Quality of MedicalCare  Whether patients will withhold information Financial benefits or healthcare?
• 8.
  Reasons why itcan’t go ahead Need clarification regarding what “reasonable steps” to inform patients are. Need adequate information campaign & consulting process Is implied consent enough? Anonymity of data needs to be prior to extraction from GP database Doctors’ conflicting legal obligations must be addressed
• 9.
  General public healthconcerns Long established patient confidentiality being undermined. ‘Opt-out’ approach not the right way to treat public confidentiality or retain confidence. -Medical records could have significant errors in them How to create awareness amongst hard to reach groups such as vulnerable patients and patients who do not receive routinely access services (and therefore don’t visit their GP in the notice period)?
• 10.
    GPs, patientsand even an MP voice concerns...
• 11.
  GP concerns But moreworryingly: Do you plan to personally opt out of the care.data scheme? Yes - 41% No – 43%  Comments from GPs included:  - It’s just another tool to manage performance  - Patients not being told about the use of their info  - Info could be used for political reasons Don’t know 16% Source: Pulse snapshot survey of 391 GPs, January 2014 ...GPs are directly involved, shouldn’t they be consulted in the decision and  - Just all part of the creeping privatisation of the NHS... method of implementation..?
• 12.
  Patient/public concerns A phoneline setup to answer queries from patients regarding the data-sharing scheme received almost 2,400 calls in the first few weeks (Jan, 2014) of a national publicity campaign: The top five questions from patients:     “Can I change my mind?” “I can’t get to my GP practice to object what should I do?” “How long have I got to decide if I want to object?” “Do I need to do anything if I’m happy for my information to be used?”  ...Public confusion is a concern because if people don’t clearly understand how can they give informed consent?
• 13.
  An MP’s concern LabourMP Roger Godsiff has a Parliamentary ‘Early Day′ motion calling for the whole care.data scheme to be ‘indefinitely′ delayed until further consultation takes place. ...He has suggested there should be "no faith" in the official guarantees of anonymity.
• 14.
  Care Data Programme-- Itneeds to be done ethically…
• 15.
  Recommendations Anonymity of dataneeds to be prior to extraction from GP database Doctors’ conflicting legal obligations (The Health and Social Care Act vs the Data Protection Act and the GMC’s Duties of a Doctor) must be addressed Patients should be able to determine when are where their own medical information is used - patients need to be fully informed - this needs more time Government first needs to deliver the promise of being able to view our medical records online (supposedly by 2015), to allow patients to check their personal information is correct, and retain public trust in healthcare Until then at least, opt-in would appear to be the best method
• 16.
  Thanks! Aminpour Amelia Jem Mirjam DickieClaire Trevor Miranda Johari Alia Chen Wenjia Lahiri Shaon Sandu Meda Nowlan Naomi Cox Hannah