Frequently asked questions about partnering with consumers

The Partnering with Consumers Standard builds on the first edition. Actions on involving consumers in the governance of healthcare organisations have been streamlined, and new actions have been added that focus on involving patients as partners in their own care.

For more information on the changes see Mapping of the first edition to the second edition

When referring to patients, consumers and consumer representatives the Commission means a:

• Patient is a person who is receiving care in a health service organisation.
• Consumer is a person who has used, or may potentially use, health services, or is a carer for a patient using health services.
• Consumer representative is a person who provides a consumer perspective, contributes consumer experiences, advocates for the interests of current and potential health service users, and take part in decision-making processes.

Healthcare professionals or clinicians, such as Visiting Medical Officers, are not considered consumers in the context of the NSQHS Standards.

Partnerships with consumers can come in many different forms. Effective partnerships involve treating people with dignity and respect, sharing information, participating and collaborating in healthcare processes.

Different types of partnerships with consumers exist including:

1. Partnerships between patients and their healthcare provider/s – to improve the patient’s own care. This could involve patients being involved in shared decision making processes, developing advance care plans and identifying people they want to be involved in their care.
2. Partnerships between consumers and a health service, department or program of care – to improve local programs or services for care. This could involve consumers being engaged as members of quality improvement and redesign teams, including participating in planning, implementing and evaluating change.
3. Partnerships between consumers and a health service organisation or system – to improve overall systems and processes for care. This could involve consumers being engaged as members of key organisational governance committees in areas such as patient safety, facility design, quality improvement, patient or family education, ethics and research

The second edition of the NSQHS Standards comprises eight standards. The Clinical Governance Standard and Partnering with Consumers Standard combine to form the clinical governance framework for all health service organisations. Together, they set the overarching system requirements for the remaining six clinical standards (Preventing and Controlling Healthcare Associated Infection, Medication Safety, Comprehensive Care, Communicating for Safety, Blood and Recognising and Responding to Acute Deterioration), which cover specific high-risk areas of patient care.

To reinforce this idea the third action in each of the six clinical standards links back to the Partnering with Consumers Standard. Health service organisations need to use the systems and processes they have established for the Partnering with Consumers Standard when meeting the requirements of the six clinical standards.

The delivery of comprehensive care is informed by, and delivered through, partnerships with consumers. Therefore strategies to implement the Partnering with Consumers Standard and Comprehensive Care Standard should be considered together.

For example, the Partnering with Consumers and Comprehensive Care Standards include actions that focus on shared decision making and care planning in partnership with consumers (Actions 2.6, 2.7 and 5.12). Health service organisations should think about where actions from the Partnering with Consumers and Comprehensive Care Standards relate when implementing strategies to meet the NSQHS Standards.

To find out more about the importance of person-centred care to comprehensive care go to the Commission’s Comprehensive Care web page.

Health service organisations should assess the competency and training needs of the workforce in line with the requirements of Actions 1.19, 1.20 and 1.21. A risk assessment should be used to inform a training schedule and identify priorities. Health service organisations can then develop, or provide access to, training and education resources to meet the needs of their workforce with regard to partnering with consumers.

Education and training to support understanding and awareness of the value of partnerships with consumers can include training and education on a range of interrelated topics such as person-centred care, shared decision making, communication techniques and health literacy. It may involve consumers sharing their stories, and providing presentations or advice on the development of training materials.

The Australian Charter of Healthcare Rights can, if needed, be adapted to meet the specific needs of the organisation; however, the seven original rights should remain in place.

There are many ways that health service organisations can inform patients, carers and families about the Charter, and make sure that they can find it easily. These strategies include:

• Discussing the Charter with patients
• Displaying brochures or posters advertising the Charter at reception desks, and in waiting areas, wards, corridors, consulting rooms and other strategic locations
• Incorporating information about the Charter into communication with patients, such as on the organisation’s website or in information brochures
• Incorporating the Charter into information packs sent to elective patients before admission
• Making information about the Charter available to patients at their bedside
• Ensuring that copies of the Charter are available in community languages, and providing copies of the Charter to any nominated interpreters
• Providing information in a format that is suitable for patients who are visually impaired, such as audio, in braille or on accessible websites.

Health service organisations need to adopt a comprehensive policy and associated procedures on informed consent by patients in clinical decision-making. Effective processes that comply with legislation and best practice are needed to:

• Inform patients (and, if applicable, their carers and substitute decision-makers) about the risks, benefits and alternatives of a treatment including any fees and charges associated with treatment and referrals
• Determine patient preferences for treatment
• Document patient consent to treatment.

Effective processes may include policies and procedures to guide and support the clinical workforce towards good standards of practice that meet legal and ethical requirements.

Some states and territories have developed informed consent templates or identified appropriate consent strategies for use in that state or territory. Health service organisations should adopt or adapt these if available.

Informed consent is a person’s voluntary decision about their health care that is made with knowledge and understanding of the benefits and risks involved.

Under Australian legislation, all adults are presumed to have the capacity to decide whether they wish to receive health care, except when it can be shown that they lack the capacity to do so.

A person has the capacity to make a decision about their care if they can:

• Understand and retain the information needed to make a decision
• Use the information to make a judgement about the decision
• Communicate the decision in some way, including by speech, gestures or other means.

If a patient does not have the capacity to make decisions about their own care, a substitute decision-maker may be appointed.

Health service organisations should consult local legislation and best-practice guidelines to identify who is authorised to provide substitute decision-making in the state or territory. Examples of substitute decision-makers are a nominated carer, an attorney, or a person nominated under an enduring power of attorney or guardianship arrangement.

Health service organisations should incorporate a list of appropriate substitute decision-makers into the organisation’s informed consent policy and educate the workforce about appropriate substitute decision-makers during orientation and ongoing training sessions.

For private sector organisations where informed consent may be obtained in a process separate from the health service organisation, it is not intended that visiting medical officer practices are monitored. Rather, the health service organisation should take a risk management approach and confirm with patients on admission, or at the commencement of an episode of care, that they understand why they are there and what treatment they will receive.

There are a range of tools and resources that can be used to assist shared decision making including:

• Patient decision aids to support decision making for particular conditions or treatments. Examples can be found at the Ottawa Hospital Research Institute’s international inventory of decision aids.
• Generic decision guides to support people to plan, track and share health-related or social decisions. One example is the Ottawa Personal Decision Guide.
• Question prompt lists are a prepared list of questions that people can take to a medical appointment or use when considering a health decision. Examples include the Question Builder and the five questions:
  • What will happen if we watch and wait?
  • What are your test or treatment options?
  • What are the benefits and harms of these options?
  • How do the benefits and harms weigh up for you?
  • Do you have enough information to make a choice?

Communication and knowledge exchange between clinicians and patients can be supported by:

• Reviewing the current admissions process in collaboration with consumers to see what information is provided to patients and how that information is given, with a view to identifying opportunities for improvement
• Providing consumers with access to information and resources in a format that meets their needs
• Providing patients with timely and open access to their healthcare record, test results and other clinical information relevant to their care
• Encouraging clinicians to create an environment in which patients feel confident asking questions, and in which clinicians respond positively to patient needs
• Using technology such as telehealth, and mobile and tablet apps to interact and share information with patients before, during and after their care
• Developing a policy and procedure to support active engagement of patients during bedside rounding and clinical handovers
• Supporting patients to take part in shared decision making with appropriate tools and resources, such as information sheets, pamphlets and videos that provide structured information about their health options.

Effective partnerships between clinicians and patients require:

• Organisational development and promotion of person-centred care
• Education and training to equip clinicians with a rounded mix of skills
• Tools and resources to support communication and shared decision making
• Integrated care models
• Meaningful ways of measuring success, such as recording patient experience and patient-reported outcome measures.

Health service organisations and clinicians can use a range of strategies to encourage patients to become partners in their own care. Key strategies include:

• Providing health information in engaging and accessible formats, such as print, mobile apps and online channels
• Eliciting and documenting individual needs, preferences and goals
• Using patient decision aids
• Encouraging and prompting patient questioning during clinical encounters
• Providing education to support self-management
• Establishing self-help and support groups
• Developing programs to encourage treatment adherence
• Providing consumers with open access to their own healthcare record.

Health service organisations can also look at strategies for engaging with patients’ carers and families. Carers and families can often provide unique insight into a patient’s health history, and provide valuable reassurance to the patient during their treatment.

Health services should have an understanding the diversity of consumers that use its services. This includes an understanding of common cultures and backgrounds; conditions experienced; barriers to accessing and understanding consumer information; and language and literacy needs of people within the community. This understanding should be used to inform organisational decisions of the types of consumer information resources that are needed, and in what format.

There are many ways that consumer information can be tailored for the local community including:

• Adapting existing consumer information into culturally appropriate formats by changing the design and messaging used in a resource
• Adapting the information for an alternative delivery channel, such as video, audio, large font or braille
• Translating existing consumer information into community languages
• Developing both simple and more complex information resources, so that clinicians have access to the most appropriate information for an individual patient
• Providing multiple opportunities for consumers to gain access to information in a variety of formats
• Employing or engaging interpreters to be part of the patient care team
• Using techniques to check a consumer’s understanding of information, such as a ‘teach back’ method
• Using symbols or cue cards for communicating with patients during care, such as instructions for the correct use of medicines
• Using technology, mobile apps or social media to help communication, if appropriate.

The Commission has developed fact sheets describing how to tailor information for consumers. These can be found on the heath literacy Supportive resources page.

The Commission’s User Guide for Measuring and Evaluating Partnering with Consumers provides an overview of the key concepts and issues that should be addressed when measuring and evaluating consumer partnerships, and to inform the development of evaluation strategies and monitoring plans for the Partnering with Consumers Standard.