A Consumer Organisation
Perspective: Important
issues for patient decision
aids.
Donna Stephenson
Policy Director
CHF – National Peak Body
Representing the interests of the
Australian health care consumers.
CHF works to achieve safe, quality,
timely health care for all Australians,
supported by accessible health
information and systems.
Healthcare Consumers and Organisations
Healthcare
Consumer
Person with an experience of the
health system.
Patient Advocate
A person who has the training to
support a person navigate the
health system.
Healthcare Consumer
Organisation
An independent organisation of
consumers, carers and/or people
interested in working to improve
consumer-centred care.
Consumer
Representative
A person who is trained and
supported to advocate for
consumer-centred healthcare on
committees, boards etc.
Consumers Health
Forum of Australia
The independent national peak body
representing the interests of Australian
healthcare consumers and its members.
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Accessible and Affordable
Care
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Timely access to care based on
urgency
Well organised and without
barriers (eg physical, hours of
operation, telephone services)
Affordable for consumer, while
ensuring sustainability of service
Coordinated and
Comprehensive Care
Joined up care (referral and
feedback)
Integrated with supported
transitions across the system
(primary, acute, aged care etc)
Availability of range of services
Information continuity
Principles of
Consumercentred
Healthcare
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Informed Decision Making
Information provision and
understanding
Treatment options, risks and
benefits
Transparent costs, out of pocket etc
Personal choice and right to refuse
including watchful waiting
Consent (informed and timely)
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Trust and Respect
Provider elicits and understands
concerns
Transparent (eg Codes of
Conduct and public reporting)
Accountable
Complaint resolution process
Risk sharing
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Informed Decision Making
Information provision and
understanding
Treatment options, risks and
benefits
Transparent costs, out of pocket etc
Personal choice and right to refuse
including watchful waiting
Consent (informed and timely)
Consumers and Informed Consent
Project
• Funded by BUPA Health Foundation
• Completed August 2013
• Steering Group included:
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Karen Karey (CHF Board)
Donella Piper (UNE)
Luke Slawomirski (ACSQHC)
Mary Potter (Consumer Expert)
Teresa Horwath (BUPA Health Foundation)
Rick Iedema (UTS)
Finding Relevant to Patient Decision
Aids
• Policy and Regulatory Settings –
Consumer groups to lead the
development of a national standard for
informed consent (based on an agreed
definition)
Findings on Informed Consent Resources
• Information on key questions to ask a health provider
• Information on the rights and responsibilities of consumers
• An audit and assessment of existing resources and create
an online repository
• A generic healthcare decision aid should be developed for
the Australian context
• An online platform with a list of consumer advocates and
advocacy organisations
• Highlight role of patient advocates to support consumers in
making healthcare decisions
• Mechanism to provide feedback to clinicians
• Training to complaints commission staff on coding to
reduce under-identification
• Include questions in patient experience surveys
Findings on Informed Financial
Consent (IFC)
• Set of key questions
• Medicare Locals (PHNs) should be funded to develop IFC
resources and strategies
• Promote role of patient advocates
• Targeted IFC resources and strategies for consumers and
carers with specific language, communication, social and
cultural needs
• Consumer groups to work with government to develop
resources on subsidy and safety net schemes
• Information on complaints process
• Production of interactive resources or smart phone app
Findings on Education, Training and
Workforce
• Informed consent training should be included in
clinical education
• Tool for clinicians to guide a discussion re a
patient’s refusal of treatment
• Role of practice nurses and other support staff in
the informed consent process
Informed Decision Making
• Includes informed consent, informed financial
consent to allow personal choice
– Informed about the risks and benefits of a treatment
– Informed about the risks and benefits of other options,
or not being treated at all
– Know the costs of treatment (Medicare, insurance, out
of pocket etc)
– Have the chance to ask questions and have them
answered
– Have the time to discuss the plan with family or carers
– Use the information to make a decision in your own best
interest
– Share the decision with your doctor or treatment team
Key Questions
• What are my treatment options, including
watchful waiting (monitoring your health
without getting treatment)?
• What are the expected outcomes,
including possible complications?
• What is the likelihood (incidence) that
each outcome will occur?