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Care data   against
Care data   against
Care data   against
Care data   against
Care data   against
Care data   against
Care data   against
Care data   against
Care data   against
Care data   against
Care data   against
Care data   against
Care data   against
Care data   against
Care data   against
Care data   against
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Care data against

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  • An informed consent: permission obtained from a patient to perform a specific test or procedure. Informed consent is required before most invasive procedures are performed and before a patient is admitted to a research study. The document used must be written in a language understood by the patient and be dated and signed by the patient and at least one witness. Signed consent should be obtained by the person performing the procedure. Also required is a statement that care will not be withheld if the patient does not consent. Informed consent is voluntary. By law, informed consent must be obtained more than a given number of days or hours before certain procedures, and must always be obtained when the patient is fully competent. An individual must be of a certain legal age to give consent .
    implied consent An agreement by a patient to allow disclosure of private health information in cases in which the patient has been informed about the information to be disclosed, the purpose of the disclosure, and his or her right to object to the disclosure, but has not done so. Implied consent is indicated by the behaviour of an informed individual. It is essential that people with higher support and communication needs are given the time and assistance they need to give their consent on issues that involve them.
  • http://www.england.nhs.uk/wp-content/uploads/2014/01/pia-care-data.pdf
  • The programme doesn't just have a social good, or multiple individual health ones. It has economic value too. such data will offer financial benefits--it's about boosting the UK life sciences industry, not only patient care. This is science policy – where science lies under the auspices of the Department for Business, Innovation and Skills – not just health policy.
  • Medical records could have significant errors in them (stories of people being denied insurance payouts for a condition they didn’t know they had or never even had).
  • Transcript

    • 1. Why the NHS Care Data 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 Care Data 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 for the public to work out who has their medical records or to what use their data will be put …
    • 5. Privacy  The extraction of 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 Medical Care  Whether patients will withhold information Financial benefits or healthcare?
    • 8. Reasons why it can’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 health concerns 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, patients and even an MP voice concerns...
    • 11. GP concerns But more worryingly: 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 set up 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 Labour MP 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-- It needs to be done ethically…
    • 15. Recommendations Anonymity of data needs 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 Dickie Claire Trevor Miranda Johari Alia Chen Wenjia Lahiri Shaon Sandu Meda Nowlan Naomi Cox Hannah

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