Action 2.09

Consumers can play an important role in supporting health service organisations to develop information that is clear, easy to understand, and relevant to the needs of consumers and the local community.^{1, 2}

Review existing processes for involving consumers in the development of consumer information

This could include identifying the publications that the organisation has produced, looking at how they were developed and determining whether consumers were involved in their development.

If consumers were not involved in developing the publications, develop and implement a process to involve consumers for all relevant new consumer information. Strategies may include:

• Establishing a consumer-based patient information working group to lead and advise on developing consumer information¹
• Attending community meetings to discuss the information needs of consumers, and the barriers and facilitators to understanding health information in the community
• Holding waiting-room discussions, focus groups or workshops to plan and develop consumer information
• Engaging consumers to co-author information in conjunction with the organisation
• Collaborating with local health consumer organisations to develop information
• Conducting interviews or one-on-one consultations with consumers to inform the development of information.

Engage consumers to review and provide feedback on existing patient information

Strategies may include:

• Conducting email, mail or phone surveys of consumers who have used the organisation’s publications
• Making follow-up phone calls to consumers who have been provided with patient information publications, to identify any problems they had with understanding the information
• Holding waiting-room discussions, focus groups or workshops for consumers to review and provide feedback on consumer information.^{1, 2}

Further information on involving patients in developing and testing information publications can be found in:

• Illawarra Shoalhaven Local Health District Patient information Portal (PiP) resources
• The Agency for Healthcare Research and Quality Health Literacy Universal Precautions Toolkit
• Can they understand? Testing patient education materials with intended readers
• Health Consumers Queensland Consumer Representatives Program Agency Handbook.

Incorporate feedback and report on how this was done

Feedback from consumers could be³:

• Directly incorporated into the development of patient information publications (for example, feedback might indicate that language needs to be modified so that the information is understandable for consumers with low levels of literacy)
• Used as a basis for the development of new publications (for example, if feedback indicates that there are gaps in the information, a new publication could be developed to avoid misunderstanding)
• Analysed by committees or groups tasked with the development of patient information publications to identify key themes for action (for example, many consumers may be experiencing a similar misunderstanding, which might require changes in programs and policies)
• Used as a basis for a broader organisation-wide communication strategy or policy to reduce health literacy barriers.

When a publication has been refined after consumer feedback, show the revised document to consumers to check that the interpretation and changes are appropriate. This could be through one-on-one conversations, committee meetings, discussions in waiting rooms or workshops.

Provide feedback to the community about the kinds of changes made to the publications in response to consumer feedback. This could be through information and updates in newsletters, meetings or reports for the people who were involved in identifying, developing and implementing the changes.

If the organisation does not develop its own information publications, source and use publications that have been developed in partnership with consumers, such as those developed by state and territory health or other government departments, professional associations or external providers. Publications from other organisations may need to be tested with the local community and adapted.

Consumers can play an important role in supporting health service organisations to develop information that is clear, easy to understand, and relevant to the needs of consumers and the local community.^{1, 2}

Day procedure services may not have the resources to develop their own consumer information. If this is the case, source and use publications that have been developed in partnership with consumers, such as those developed by state and territory health departments, professional associations or external providers. Publications from other organisations may need to be tested to ensure that they suit the patients who use the day procedure service, and adapted if necessary.

Review existing processes for involving consumers in the development of consumer information

This could include identifying the publications that the organisation has produced, looking at how they were developed and determining whether consumers were involved in their development.

If consumers were not involved in developing the publications, develop and implement a process to involve consumers for all new consumer information. Strategies may include:

• Holding waiting-room discussions, focus groups or workshops to plan and develop consumer information
• Engaging consumers to co-author information in conjunction with the organisation
• Collaborating with local health consumer organisations to develop information
• Conducting interviews or one-on-one consultations with consumers to inform the development of information.

Engage consumers to review and provide feedback on existing patient information

Strategies may include:

• Conducting electronic, mail or phone surveys of consumers who have used the organisation’s publications
• Making follow-up phone calls to consumers who have been provided with patient information publications, to identify any problems they had with understanding the information
• Holding waiting-room discussions, focus groups or workshops for consumers to review and provide feedback on consumer information.^{1, 2}

Further information on involving patients in developing and testing information publications can be found in:

• Illawarra Shoalhaven Local Health District Patient information Portal (PiP) resources
• The Agency for Healthcare Research and Quality Health Literacy Universal Precautions Toolkit
• Can They Understand? Testing patient education materials with intended readers
• Health Consumers Queensland Consumer Representatives Program Agency Handbook.

Incorporate feedback and report on how this was done

Show the revised document to consumers to check that the interpretation and changes are appropriate. This could be done on a one-on-one basis, or through discussions in waiting rooms or workshops.

Provide feedback to the community about the kinds of changes made to the publications in response to consumer feedback. This could be through information and updates in newsletters, meetings or reports for the people who were involved in identifying, developing and implementing the changes.

Examples of evidence

Select only examples currently in use:

• Committee and meeting records that show consumer involvement in the development and review of patient information resources
• Feedback from consumers who have used the health service organisation’s information publications
• Evaluation reports on existing patient information publications that identify how consumers were involved in development and review
• Examples of publications that have changed in response to consumer feedback
• Communication with consumers who provided input into the development or review of resources about the types of changes made in response to their feedback.

Consumers can play an important role in supporting health service organisations to develop information that is clear, easy to understand, and relevant to the needs of consumers and the local community.^{1, 2}

Some MPSs and small hospitals may not develop their own publications. If this is the case, use publications that have been developed in partnership with consumers, such as those developed by state and territory health departments, professional associations or external providers. Publications from other organisations may need to be tested with the local community and adapted.

If the MPS or small hospital develops its own consumer information, review existing processes for involving consumers in the development process. This could include identifying the publications that the organisation has produced, looking at how they were developed, determining whether consumers were involved in their development, and engaging consumers to review and provide feedback on existing patient information.