Genomics and
Your Hospital

Involve consumers in genomic medicine services

Consumer involvement refers to how the people who use health services can work with the providers of these services, to shape decisions about priorities, policy, service design and practice.

‘Consumers’ can include patients (people who are currently receiving care through the service) and their family members, former patients, and members of relevant communities (for example, people who have the same health condition or people who speak the same language).

This webpage can help you plan how to involve consumers in developing or strengthening genomic medicine services in your hospital.

Consumer involvement is a key action in the Genomics and Your Hospital toolkit, which supports hospitals to plan and implement genomic care.

• Why is consumer involvement important?
• How to identify consumer representatives
• Planning for meaningful consumer involvement
• Tool: Recommendations to support hospitals involve consumers in genomic medicine services
• How was the guide developed?
• Other useful information

Why is consumer involvement important in genomics?

It’s widely accepted that consumer involvement leads to safer and higher-quality healthcare. Genomics has unique and uncommon features that make consumer involvement both necessary and challenging.

Consumer involvement in genomic care services can help ensure that:

• Services are designed to meet the needs of patients and their family members or carers
• Staff have the necessary skills to engage patients and families in critical aspects of their care, including decision making
• Information on genomic testing and results is accessible and understandable for all patients
• Patients have the information they need to provide informed consent for genomic testing and the use of their data
• Patients get appropriate post-test support, including referrals to support groups and follow up

How consumers contribute provides tangible examples of consumer involvement in the Melbourne Genomics program.

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How to identify consumer representatives

Start with your purpose for community involvement. For example, are you trying to launch a new service, plan a patient pathway, or develop information materials for a specific group? Will you need people with lived experience of a specific health issue, or people who are already experienced in consumer involvement?

Depending on this purpose, you could consider approaching:

• Your hospital’s existing community advisory committees
• Former patients of your service 
• Support groups for people with specific health conditions
• Aboriginal community-controlled health services
• Multicultural services or community groups

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Planning for meaningful consumer involvement

Your consumer involvement plan should include the following minimum requirements.

Mechanisms for involvement

Will you set up an advisory group or consumer panel that meets regularly? Hold community consultations? Conduct stakeholder interviews or focus groups?

Induction and briefing

How will you support your consumers to discuss a topic as complex as genomics? How will they get to know each other and the project team?

Diversity

Ensure that you have a good mix of perspectives and experiences, especially from consumers who will be most affected by the service. Consider how everyone can participate, including First Nations peoples, people who speak languages other than English, and people with a disability.

Remuneration

Consumers should be fairly remunerated for the time and expertise they bring to your project. Consider an honorarium for ongoing involvement and individual payments or vouchers for one-off activities.

Consumer experience

How will you ensure your consumers have opportunities to connect and learn from each other? How will everyone’s voice be heard? How will you make the experience worthwhile?

Feedback

Ensure consumers can see how their advice was used, and whether it was helpful in achieving the desired outcomes. Feedback should be a continual, two-way process.

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How was the guide developed?

These recommendations are taken from the guide Making a difference: The value of consumer involvement in genomic medicine. The guide was developed by a group of 25 consumers. These included members of the Melbourne Genomics Community Advisory Group and five consumer panels set up to guide projects in nephrology, dementia care, organ transplants, cancer and paediatrics.

Consumers attended either an in-person or an online workshop, where they were invited to identify where they had contributed most effectively, what could have been improved, and what lessons might be learnt for future consumer involvement in genomic medicine.

The guide – and its recommendations – were validated with the consumers prior to publication of the report.

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Other useful information

Involve Australia Guidelines for Community Involvement in Genomic Research

Built from community perspectives, these guidelines are for healthcare researchers.

Partnering in Healthcare Framework

This framework from Safer Care Victoria offers practical strategies to involve consumers

What my genetic health professionals did right

An article that explores what good genomic care looks like, from a parent’s perspective.

Melbourne Genomics patient and community resources

Links to genetic support groups and plain language genomics information materials

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© MGHA 2024.  These materials were prepared by the Melbourne Genomics Health Alliance (MGHA) and are protected by copyright. We would like to acknowledge the expertise and knowledge of those who have contributed to the development of these materials. Reproduction or distribution of these materials without this notice is prohibited.