Partnering with Consumers

Once you have an idea of how consumers can support your research, what skills and experience they need, comes the challenging part of finding them. There are several ways to find consumers to be involved in your research. For many of these networks, it would be wise to establish an ongoing relationship especially if they are able to provide contacts or access to networks for you. Here are some ideas to consider:

• Contact the peak consumer organisations such as Consumers Health Forum of Australia or specific to the health condition you are targeting. Most of these organisations have avenues of reaching their network or a platform to advertise your project. 
• Tap into the AHRA Research Translation Centre network that your institution is likely a part of.
• Share your expression of interest on our Collaboration Noticeboard.

No matter your population of interest, there will no doubt be a variety of backgrounds, circumstances and perspectives. Consider involving consumers with diverse genders, ages, types of expertise, experiences and from varying cultures and socio-economic areas to address issues of health inequalities and equity.

To connect with diverse and under-served populations, it is important to meet consumers and communities in their own space and take the time to build relationships and trust before talking about the research. Here are some strategies to consider:

• Approach the community organisation or existing consumer groups to discuss the best approach to engage and work with them. 
• Provide something of benefit to the community in exchange for time with them.
• Offer and organise interpreter services.
• Consider offering evening or weekend meetings to cater to their schedules.
• Pay for, or organise transportation. 

Relationships take time to build, think of it as an investment. While success may not come straight away, it is important to note your progress. Keep a record of your effects to access community groups, even if they were unsuccessful.

For additional resources, please see our list under Working with Aboriginal and Torres Strait Islander Communities and Working with CALD Communities.

How do you want consumers to support your research? What information can they provide that will be helpful to you? What will they gain from being part of your research? These are some of the key questions to consider before you start engaging people in your research. Once you’ve answered those big picture questions, consider some of the logistical ones, such as:

• Time commitment from consumers (number of meetings, length of meetings, length of involvement term).
• Modality of meetings (in-person, virtual).
• Accommodations for accessibility.
• Remuneration process.

Once you have this information, it’s important to have an agreement in writing to ensure clarity of expectations and roles between you and the consumer. These documents can be in the form of a Terms of Reference or an Involvement Agreement.

For additional resources and documents, please see our list under Templates.

Valuing the contribution of consumers to health research through payment, reimbursement and recognition is considered best practice and reflects the NHMRC and CHF Statement on Consumer and Community Involvement in Health and Medical Research.

What does payment and reimbursement mean:

• Payment: an amount of money paid to consumers for the work they have undertaken as part of their involvement in health and medical research.
• Reimbursement: repayment or compensation for any reasonable money spent as a result of or to enable consumer’s involvement in research.
• Payment and reimbursement can remove barriers that prevent individuals from being involved and promote a sense of equity across the team. 

Key considerations:

• Have early conversations with consumers about how they would like to be compensated, as it can impact their taxable income, pension or benefits.
• Ensure you understand the claims process. From a consumer perspective, the process should be simple, clear and timely. Liaise with the finance department to help explore different payment options and put a streamlined process in place. Approach the community organisation or existing consumer groups to discuss the best approach to engage and work with them.

For additional resources, please see our list under Payment, Reimbursement & Recognition.

Now that your project is underway and consumers are on board, the hard work begins to build and maintain that relationship. Most of this comes back down to building a safe space for contribution and regular, two-way communication. Some key tips to ensure these include:

• Establishing an onboarding process for consumers when they join the project to help them understand the organisation and project they are contributing towards.
• Having strong facilitation skills to ensure voices around the table have equal opportunity to contribute to the conversation without feeling intimidated.
• Providing additional support by offering opportunities for consumers to be briefed or debriefed before or after a meeting. This is also a good opportunity to have an overall check-in with them and get feedback on the process and their involvement to date.
• Regularly update consumers on what is happening across the project, even if it may seem nothing is happening. Periods of prolonged silence often lead to disengagement from the project.

For additional resources, please see our list under Supporting Consumers.

When embedding consumer and community involvement in your project, it is important to assess its effectiveness and receive feedback on what changes you can make in future. Here are some considerations to keep in mind:

• Feedback from various stakeholder perspectives.
• Definition of successful consumer involvement and how you will measure it.

For additional resources, please see our list under Evaluation of Consumer and Community Involvement.