Consent

1
Consent ConfidentialityA Lay Persons View

• Michaela Willis
• National Bereavement Partnership
• National Committee relating to Organ Retention

2
Touch on the Past

• Why the outcry?
• Media frenzy destructive and counterproductive
• Dead and living very different
• Different emotions

3
What was missing?

• The culture of the public had changed pursuant
  of medical advances
• The culture of medicine had not!
• Protect the patient tell them what they need to
  know but dont cause to much distress
• Good intentions but misguided!
• Families need information
• Need to make proper informed choices
• Where consent is not informed it is worthless
• In my experiences most people would say yes

4
Consent

• Genuine consent is one of the foundations of
  trust between doctors and patients
• Consent is a fundamental legal requirement in
  relation to the treatment of living patients

5
Why is Consent so important

• Empowerment
• Choice
• Enabling
• Personal management of risk
• Properly focused on the rights of individual
  families and relatives

6
Consent some differences

• Adults less emotive
• Children more emotive
• Parents carry risk and guilt
• The Gillick competent child depends what it is!
• A dressing for a scald or a trial for a new drug
  on a 16 year old
• Given the nature even if parent patient
  consents, the law is likely not to allow

7
Consent

• The Bill does not require consent for
• Clinical Audit
• Quality Assurance
• Education and Training that is incidental to
  medical diagnosis or treatment
• Public Health Monitoring
• The public need to be informed of this

8
Consent

• The Bill requires consent from patients for the
  storage and use of tissue for the following
  purposes
• Research into disorders of the functioning of
  the body, including new therapies
• Education or Training that is not incidental to
  medical diagnosis or treatment
• Obtaining medical or scientific information
  relevant to another person
• Wouldnt you want to be asked?

9
Consent Forms

• Time consuming and arduous why so important?
• This is how all parties benefit
• The patient understands what they consenting to
• The relatives understand the process
• The Doctor knows informed choices have been made
• Or does he if he is not the one who took consent?
• We all know now it cannot be just a tick box
• Systems should be in place to ensure that and
  clearly indicate where consent for research has
  been given
• Ensuring patient confidentiality

10
The Patient

• What is Research?
• Most people have limited medical knowledge
• Most people dont even know where their blood
  tests go
• What is done with it and by whom?
• The media again
• No shocks and surprises
• Choice may accept most types of research with a
  few exclusions

11
The Patient

• Evidence from the work I have been involved with
  would suggest
• Patients/families would say yes to teaching,
  training and researchonce informed
• No shocks and surprises
• Comfort from the benefit of others
• Some will refuse respect them

12
The Patient

• Dont be patronising but be clear
• Many people have no medical knowledge
• Dont understand the processes involved
• Fear of the unknown
• The media has a lot to answer for

13
The Patient

• Delivery is the key
• People need to know they have worth
• Information, communication, choice and
  understanding
• Desire
• Dont be afraid to ask

14
Who Benefits?

• Primarily the patient/family diagnosis
• Doctors
• Society
• Fear
• Will their loved one be cared for?
• Getting the right balance
• Rights of the individual patient and their family
  taking on board the interests of society is a
  judgement

15
Communication

• Clear unambiguous information
• What is involved plain and simple
• No shocks and surprises
• The imagination is far worse
• Dealing with reactions
• Its not personal its nothing to do with you

16
What is important now?

• The Human Tissue Authority
• Robust yet workable, flexible and responsive
  codes of practice
• Communication
• Dont hide what you do be proud
• Inform others help them to understand
• The culture needs to changemore!

17
Confidentiality

• Why is it important to patients/public
• Emotional privacy sense of selfhood
• Misuse of information to cause embarrassment,
  harm, financial loss

18
Breach of Confidentiality

• Who is damaged?
• What damage?
• Individuals and corporate damage
• Trust eroded
• Justification public good, emergencies, risk
  management (Soham)

19
Data Protection Act

• Accuracy of Data
• Justification for it being kept
• Does not apply to the dead
• Although the Access of Patient Records and GMC
  rules do
• It is a matter of trust
• Ask yourself does the patient know what you are
  doing have they been informed of process
  would they consent

20
Looking to the Future

• The Human Tissue Bill must be presented as a
  living document
• Legal language must be translated into popular
  understanding
• Embrace all medical specialties and health
  professionals
• Information should be integral to patient care
• Lessons about the diversity within our community
  must be learned