Resources: Preparing for Engaging Health Consumer Representatives

Preparing for Engaging Health Consumers Representatives

Before engaging with health consumer representatives or lived‑experience advocates, we encourage people to take the time needed to prepare for that engagement. This may include reflecting on both your own perspectives, understanding of the representative and being clear on the purpose of the engagement, power dynamics and parameters you may be working within. This preparation helps ensure that the engagement is respectful, collaborative, and upholds the dignity of everyone involved. Approaching this work through a trauma‑informed lens also increases emotional safety for all participants.

We each bring our own histories, lived experiences, and ways of understanding the world. Taking time to reflect on these influences before setting up an engagement is essential. Power dynamics, both structural and personal, shape how interactions unfold and the impact they have.

The preparation necessary before you begin engaging with health consumer representatives in a project is both about understanding ourselves and the people we seek to work with but also understand what the purpose of engaging these representatives is. What do you hope to gain from involving consumer representatives? How do you understand the context you are working in and what is possible in this collaboration?

In the coming months we will be releasing a full suite of resources to assist you in this preparation phase. The first of these resources is the reflective tool below.

Reflective Questions for Engaging with Health Consumer Representatives

The reflective questions below can support developing both an understanding of ourselves, our context and those we seek to work with. You can explore the reflective questions below, and they are also available in a downloadable workbook.

We are grateful to researchers Rebecca Moran and Sophie Ridley for providing consent to adapt their Trauma‑Informed and Dignifying Practice in Qualitative Research (2021) for this purpose.

Reflective Questions for Engaging with Health Consumer Representatives and Lived Experience Advocates

Safety

What do you and the consumer need to protect your emotional safety? Consider triggers, potential for humiliation or invalidation, predictability, and preparedness, feeling in control.

What do you and the consumer need to protect social safety? Consider anonymity and confidentiality, potential for humiliation or invalidation, potential for backlash from social groups for participation or speaking out, any potential for future encounters or mutual acquaintances.

Have you asked the consumer whether they have any concerns about safety (physical, social, and emotional)? The Consumer Engagement Needs and Expectations Form may be a good starting point.

Trust

What is trustworthiness for you?

What does trustworthiness look and feel like? How is it communicated, demonstrated, and enacted?

How can you demonstrate your trustworthiness? Consider authenticity and transparency, keeping your word, anything you might wish to communicate to the consumer about your position, identity, motivations, intentions, or uncertainties.

Have you discussed communication preferences and needs with consumers?

How will you demonstrate to the consumer that you have open understanding of, and compassionate respect for, their identity or circumstances?

Power, choice, collaboration and control

Is there opportunity for the consumer/s to lead this work? If not, to at least make choices about the extent and nature of participation in an ongoing manner?

Are there opportunities for the consumer to have some control throughout their participation? E.g., how the engagement is set up, venues, timing.

Are there opportunities for the consumer to give feedback?

Are there opportunities for the consumer to see how their contribution is being used?

Have you considered power differentials and inequalities?

How can you attend to these inequalities and issues of power?

Have you considered your positioning and privilege in this space?

How will you communicate with the consumer that you value their contribution and expertise?

Critical reflection

What is your position (personal and political), your motivation, and your identity in this work? How might this impact the consumer?
What are your vulnerabilities in this work? How might this impact the consumer?
What are your prejudices, biases, preferences, and alliances? How might these impact the consumer? Are you prone to prioritise certain viewpoints or voices ahead of others? Consider physical, emotional, spiritual, and political responses to the topic, the consumer, and data content. How might these responses be entering into your engagement? How might this impact the consumer / advocate?
Where might you encounter ethical or moral distress in your work? How might this impact the consumer? What are your uncertainties or doubts? What do you feel like you don’t know, or don’t know enough about? How might this impact the consumer?
Do you need external support to navigate any of these concerns?

Dignity promotion

Do you have an understanding of the consumers or advocates personal or cultural history, and the potential impact of previous experiences of injustice, oppression, invalidation, and denial of dignity? Is this something you could ask about in your discussions of safety? (it may not be).

Are you sensitive to the political context of your engagement and the participant/s life and history?

Is there a collective history? Is there expertise you can access to develop your understanding? For example, literature by advocate or consumer movements, particularly those from communities that experience access inequities. 

Have you considered the ethical use of people’s words and voices?

Have you considered if and how the consumer may have experienced dismissal or discrediting of their knowledge, experiences and perspectives) and the impacts of this? Consider the participant/s circumstances and how much participation might be costing them, in terms of physical, emotional and social health as well as economic or time costs. Is your request an unfair burden or imposition?

How is reciprocity present in your relationship with the consumer?

How will you continue to involve them, how will you inform them of the outcome or their impact?

Are you remunerating them and reimbursing their expenses appropriately? 

What you might share of yourself in your interactions with the consumer?

Are there ways that institutional (e.g., health service, government, university) power might impact upon participants’ agency, autonomy, and dignity?

Check out the downloadable reflective questions resources below: