Data Protection Act 1998

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Data Protection Act 1998

• University Secretarys Office
• Data-Protection_at_bristol.ac.uk

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The Act obliges you to

• Collect information about people only with their
  permission, unless there is a legal reason to do
  so
• Show individuals the information it holds about
  them if they request it
• Be very careful when giving this information to
  anyone else

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Personal Data

• any information
• about living people
• who can be identified by that information
• or by combining the information with other data
  that you have, or are likely to have in the future

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Examples of Personal Data

• ID number, NI number, NHS number, Postcode
• One or more factors specific to physical,
  physiological, mental, economic, cultural or
  social identity

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The Act

• Applies to all records, including
• Paper, card indexes, microfiche
• Electronic records, email
• Photographs, visual images
• Recordings, audiotape, videotape
• CCTV, X-rays

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Processing

• Applies to anything that can be done to
  records including
• obtaining/recording
• holding
• disclosing/publishing
• typing/writing
• destroying/disposing

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Rights of Data Subjects

• Subject Access
• To prevent processing likely to cause damage or
  distress
• To object to direct marketing
• To object to automated decision making

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Rights

• To receive compensation for unwarranted damage or
  distress
• To ask the Court to order rectification,
  blocking, erasure, destruction of data
• Other remedies for inaccuracy

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The Principles

• The Act says personal data shall
• be collected and processed fairly and lawfully
  (consent!)
• be held for specific and lawful purposes
  (specified in advance)
• only be disclosed to those people described in
  the register entry.

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The Principles

• The Act says personal data shall
• be adequate, relevant, and not excessive
• be accurate, and where necessary, kept up to
  date
• be held under secure conditions for no longer
  than is necessary for the purpose.

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What are Sensitive Data?

• Racial or ethnic origin
• Political opinions
• Religious, or other similar beliefs
• Trade Union membership
• Physical or mental health or condition
• Sexual life
• Convictions or alleged criminal acts

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Sensitive Data

• You must have the specific written permission of
  the data subject to hold sensitive data unless
  you already have a legal requirement to process
  those data.

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Sensitive Data

• Security must be appropriate to the degree of
  harm caused by the misuse of data

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Definitions

• recording and image include
• all types of audio and visual recordings and
  images of people
• originals or copies
• carried out for any purpose

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Images/Recordings

• NOT included
• Pathology slides containing human tissue (as
  opposed to an image of such a slide).
• CCTV recordings of public areas

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When is consent not required?

• When images cannot, on their own, identify the
  patient and are suitably anonymised
• Pathology slides
• X-rays
• Laparoscopic images
• Images of internal organs
• Ultrasound images

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Within the clinical setting

• Images made for clinical purposes form part of
  the medical record
• Images made for treating/ assessing a patient
  must only be used for the patients care or the
  audit of that care

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Within the clinical setting

• Guidelines say
• Truly anonymous recordings made for
  treating/assessing patients may be used within
  the clinical setting for education or research
  purposes without express consent as long as this
  policy is well publicised.

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Within the clinical setting

• BUT gain consent if
• images show extreme or unusual features or
  injuries that could identify the subject, or
• images illustrate a condition that is so rare
  that individuals could be identified.

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However

• Informed consent must be sought for any form of
  publication, or for use outside the clinical
  setting.

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Anonymising v consent

• Apparently insignificant features may still be
  capable of identifying the patient to others,
  such as distinguishing marks, tattoos, body
  piercings, posture and gait.
• Research shows it is usually impossible to be
  sure that a patient will not be identifiable from
  a recording

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Anonymising v consent

• Therefore no recordings should be published
  without patient consent
• Written consent must always be obtained in
  advance
• Get a signature
• Give a contact name and address

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Consent for publication

• Tell the patient
• The possible uses of the images
• The purpose for which they are held
• That it will not be possible to control the use
  of material once it has been published,
  especially if it is to be published on the
  Internet

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Consent for publication

• Make it clear to the patient
• that s/he can stop the recording at any time
• S/he is entitled to view the image in the form in
  which it will be shown before deciding whether to
  allow its use
• If s/he or she does not consent for the image to
  be used for these purposes it will be safely
  destroyed

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Obtaining consent

• Ask the patient
• To confirm specifically whether images can be
  used for
• Teaching
• Research
• Publication in books
• Publication on the internet

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Consent

• Consent must be meaningful
• Avoid jargon
• Use plain language
• Never imply consent is expected

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Suggested Wording

• This information will be held and processed for
  the following purpose(s)
• .
• I agree to the University of Bristol recording
  and processing this information about me. I
  understand that this information will be used
  only for the purpose(s) set out in the statement
  above, and my consent is conditional upon the
  University complying with its duties and
  obligations under the Data Protection Act.
• Signature.. Date .

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Consent

• Consent is a process, not merely obtaining a
  signature on a piece of paper
• Do not confuse capacity to give consent with your
  assessment of the reasonableness of the persons
  decision

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Consent by proxy

• It is not possible
• to obtain consent by proxy

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Consent and Adults

• Adults are always assumed to be competent to make
  decisions unless demonstrated otherwise.
• In England and Wales, no one (not even a spouse)
  can give consent on behalf of adults who are not
  capable of giving consent themselves.

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Help people to give consent

• Use
• Specialist colleagues such as speech and language
  therapists or experts in the field of learning
  difficulty
• Pictures or communication aids
• Appropriate, respectful, plain language
• Advocates

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Consent and children

• Once children reach the age of 18 no one else can
  take decisions on their behalf.
• No specific age when a child becomes competent
  depends on the child and the complexity of the
  proposed project (Gillick competence).

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Consent and children

• If a child cannot consent, seek consent from the
  person with parental responsibility
• Younger children who can understand can give
  consent, but it is preferable also to involve
  their parents.

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Consent and children

• Seek advice before proceeding if a competent
  child refuses but a parent agrees

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Consent and children

• Always seek ethical approval when working with
  children
• Staff/students working with children should be
  CRB checked

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Patients unable to consent

• NEVER research those who do not have the capacity
  to consent if you can achieve the same results
  researching those who do.
• If you wish to research those without the
  capacity to consent you MUST have the approval of
  an ethics committee.

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Patients unable to consent

• Guidelines say
• make recording but consent must be obtained when
  the person regains capacity
• recording must not be used until consent has been
  given
• must be destroyed if the patient does not consent
  to its use

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Unlikely ever to give consent

• If the patient is unlikely ever to be able to
  give or withhold consent discuss the matter with
  those close to the individual.
• The recording should not be used in any way that
  might be against the best interests of the
  subject.
• Seek advice from data protection officer/ethics
  committee.

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Existing collections

• Since 1997 GMC standards have required clinicians
  to obtain permission to make any recording that
  would not form part of the patients assessment
  or treatment, regardless of whether the patient
  may be identifiable.

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Existing collections

• Recordings made after 1997 from which a patient
  can be identified but for which consent cannot be
  proved must not be used.

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Pre-1997 collections

• Continue to use truly anonymised recordings
• Replace pre-1997 recordings with similar
  recordings for which consent has been obtained
• Have a documented, timetabled schedule of
  replacement.

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Working with other organisations

• Ensure they have a registration
• Gain consent BEFORE giving them data
• Gain consent BEFORE getting data from them
• (exception Secretary of State)

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Summing up

• Plan ahead
• Review patient information sheets and consent
  forms
• Have a confidential waste policy for paper,
  tapes, audiotapes
• Have a computer disposal policy with appropriate
  software

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Useful Links

• Information Commissioner
• http//www.dataprotection.gov.uk
• The Data Protection Act 1998
• http//www.legislation.hmso.gov.uk/acts/acts1998/1
  9980029.htm Secretarys Office
• http//www.bris.ac.uk/Depts/Secretary/datapro.htm

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ANY QUESTIONS? THANK YOU