A Consumer Organisation Perspective: Important issues for patient decision aids.

Donna StephensonPolicy 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 Consumer

Person with an experience of the health system.

Patient AdvocateA 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.

Consumers Health Forum of Australia

The independent national peak body representing the interests of Australian healthcare consumers and its members.

Consumer Representative

A person who is trained and supported to advocate for

consumer-centred healthcare on committees, boards etc.

Healthcare Consumers and Organisations

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)

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

Trust and Respect Provider elicits and understands

concerns Transparent (eg Codes of

Conduct and public reporting) Accountable Complaint resolution process Risk sharing

Accessible and Affordable Care

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

Principles of Consumer-

centred Healthcare

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:

– 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?