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Data Protection Act 1998

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Title: Data Protection Act 1998


1
Data Protection Act 1998
  • University Secretarys Office
  • Data-Protection_at_bristol.ac.uk

2
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

3
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

4
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

5
The Act
  • Applies to all records, including
  • Paper, card indexes, microfiche
  • Electronic records, email
  • Photographs, visual images
  • Recordings, audiotape, videotape
  • CCTV, X-rays

6
Processing
  • Applies to anything that can be done to
    records including
  • obtaining/recording
  • holding
  • disclosing/publishing
  • typing/writing
  • destroying/disposing

7
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

8
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

9
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.

10
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.

11
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

12
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.

13
Sensitive Data
  • Security must be appropriate to the degree of
    harm caused by the misuse of data

14
Definitions
  • recording and image include
  • all types of audio and visual recordings and
    images of people
  • originals or copies
  • carried out for any purpose

15
Images/Recordings
  • NOT included
  • Pathology slides containing human tissue (as
    opposed to an image of such a slide).
  • CCTV recordings of public areas

16
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

17
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

18
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.

19
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.

20
However
  • Informed consent must be sought for any form of
    publication, or for use outside the clinical
    setting.

21
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

22
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

23
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

24
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

25
Obtaining consent
  • Ask the patient
  • To confirm specifically whether images can be
    used for
  • Teaching
  • Research
  • Publication in books
  • Publication on the internet

26
Consent
  • Consent must be meaningful
  • Avoid jargon
  • Use plain language
  • Never imply consent is expected

27
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 .

28
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

29
Consent by proxy
  • It is not possible
  • to obtain consent by proxy

30
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.

31
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

32
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).

33
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.

34
Consent and children
  • Seek advice before proceeding if a competent
    child refuses but a parent agrees

35
Consent and children
  • Always seek ethical approval when working with
    children
  • Staff/students working with children should be
    CRB checked

36
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.

37
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

38
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.

39
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.

40
Existing collections
  • Recordings made after 1997 from which a patient
    can be identified but for which consent cannot be
    proved must not be used.

41
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.

42
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)

43
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

44
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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