Introduction by Croakey: Consumers play a crucial role in driving health system reforms but the lack of adequate remuneration available to support them in this role means that many health organisations miss out on the full benefit of their contribution.
In the article below, consumer advocate Harry Iles-Mann shares his journey as a consumer advocate, and provides some valuable advice for organisations seeking to engage with consumers. In particular he focuses on the role of fair and adequate remuneration in ensuring organisations can benefit from the knowledge, skills and experiences of young consumers.
Harry Iles-Mann writes:
“Will I be paid for this, or are they just expecting me to volunteer my time, experience, and expertise?”
For health consumer representatives this is a familiar and off-putting first thought when someone approaches us about joining a committee, attending a working group session, or speaking at an event.
When I started on my journey as a consumer representative I did it out of passion alone. As my audience, and the interest in my insight and acquired expertise (my value) grew I realised that for someone like me, which traditional models of employment are unviable for due to the volatility of my health, this path could be one which comes to support my livelihood and fulfil my ambition to contribute to positive change in health.
The first time I charged a fee was a daunting experience. Back then, the subject of remuneration was an uncomfortable one. Since then, recognising that providing my insight and expertise is part of an exchange of value has acted to reenforce my own vigour in investing in myself as a professional.
It has ensured that the insight I provide, through the services I offer, are ones which I am accountable for. That accountability has been a tether that ensures I maintain a tangible connection to the communities and experiences I advocate for. It has also instilled intentionality and responsibility in the way I act, and supported my independence as a consumer leader.
Based on this experience, I offer the following advice for organisations interested in engaging with, and benefitting from the insight and experiences of health consumers.
A lagging maturity
Adequate remuneration (or any) is rarely a consideration for most organisations when requesting us to share our insight into health system reform and innovation from our very different and incredibly impactful perspectives.
This speaks to lagging maturity regarding true co-creation and the building of genuine partnerships with consumers with lived-experience, despite ‘patient centred models of design and care’ being one of the health sectors most beloved tag lines over the last few years.
For many in the advocacy space, those terms have come to be regarded with distain as organisations reposition their messaging and image in an attempt to leverage the improved public perceptions that come with appearing more connected to the community. In reality, organisations’ declaration to partner with and recognise the valuable contribution of consumer representatives doesn’t survive the conversation about renumeration.
Why the money matters
If you are one the few organisations genuinely embodying the principals of co-creation and partnership in consumer engagement, the next big barrier to getting the most out of those you engage with and generating valuable (and often profitable) insight is whether you’re recognising that value being contributed via remuneration.
Whether you do or not can impact the kind of consumer representation and thought-leadership available to you in the space that you appeal to, and engage with. Critically, this will be what gives you access to engaging with the growing, and incredibly valuable expertise of consumer leaders.
Leaders in this space not only have a wealth of lived-experience but have often invested significantly in building a comprehensive system literacy and professional expertise in advocacy-adjacent fields of public policy and legislation, health economics and law, health strategy and administration, and design and creative proficiencies. When paired with lived-experience, this combination makes them powerful agents for change.
Developing this expertise , and taking the time to reflect on personal experiences of ill health in order to distill value and tangible insight takes a lot of time, effort (and money) – and like it did for me, develops into a career path.
A critical enabler of change
By offering little, or no remuneration for engagement, you’re narrowing the availability of value and insight, networks, and expertise available to you.
When it comes to health, this means many of the consumer representatives and leaders at the table will be disproportionately over-represented by the elderly and parents – demographics for whom money often isn’t as much of a barrier as it is for young people.
This bias has contributed to entrenching a voluntary model of engagement which has not needed to consider remuneration as key to distilling value, but which is ultimately inequitable and inaccessible to young people, and those living with complex chronic illness and disability.
Consumer representation as a professional, or even as an ad-hoc, pursuit for young people and those living with complex lived-experiences who lack the stability of employment and income due to the very experiences that qualifies them to make contributions, is often an unviable way to make a living.
Juggling complex priorities
Picture yourself in your mid-twenties, trying to complete tertiary studies or a trade while working to support yourself to pay tuition fees, keep pace with a cost of living crisis in the midst of managing complex health issues.
If you were asked to give up your time to attend regularly attend a working group, or take up a (usually voluntary) role as a consumer representative, you’d likely weigh up whether your time is better spent working to pay for one of your many expenses, or committing yourself further to studies that you’re paying for instead.
Deciding to devote your working life to building your capability and expertise to most effectively leverage your lived-experiences to achieve positive system change for little to no income is a seemingly insurmountable an unsustainable commitment.
This is why the National Mental Health Commission developed a paid participation policy to recognise renumeration as enabling engagement in a majority youth-represented sector.
Unfortunately, policies like this are not common outside the mental health sector, meaning that attempts to reform and innovate in health overwhelmingly excludes, or makes legitimately unviable, the engagement with those of us with a wealth of lived-experience, acquired and practiced expertise, and passion under the age of 40.
No transaction of value
The absence of proper remuneration from the perspective of business means that in the relationship with consumer representatives and leaders there is no actual transaction of value, and therefore no certainty that the contributions made (and the people that make them) can be held in any way accountable to, or provide a means of verifying the quality and relevant value of their insight.
It’s against the interest of both the organisation and the sector, and consumer representatives, leaders, and the community for an consumer representation-on-volunteering basis to become a sustainable, meaningful, impactful, and quality controlled exchange of ideas and value that can be evaluated and scaled.
It is especially exploitative of consumer representatives when organisations and the sector stand to benefit financially from insight and experience surrendered by those with lived-experience, all while those who have suffered and invested substantial time and resources in formalising and refining their own experiences are left spent and their time given with very little of value in return to support their livelihood and continued pursuit of affecting positive change.
One uncomfortable conversation away from change
Money is never a popular or comfortable subject to discuss. But it needs to be normalised in order for us to change the way we engage with health consumers and the community.
If we are not recognising an exchange of value and providing adequate remuneration for that value then we will continue to see terms like ‘co-design’ and ‘patient-centred’ regarded with derision and cynicism when uttered from the system’s mouth by the very community we are declaring an intent to partner with.
Remunerating consumer representatives properly, like we already do for clinical and industry stakeholders, is a small price to pay for a value contribution that is changing on a fundamental level, for the better, the way we approach health system, policy, and service reform and innovation in Australia.
See this recent article on the power and value of embedding consumer engagement and lived experience in health and medical conferences.
