If you want valuable insights from health consumers you engage with, you should start by paying us

For Patient and Health Consumer Advocates it’s 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 to share our insight into health system reform and innovation from a very different and incredibly impactful perspective:

   “Will I be paid for this, or are they just expecting me to volunteer my time and experience?”

The fact that adequate remuneration is rarely a consideration for most organisations speaks to how poorly core concepts of true co-design and genuine engagement with lived-experience are understood, despite ‘patient-centered’ 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 disdain as the messaging of organisations trying to cash in on the improved public perceptions that come with appearing more connected to the community. In reality, that connection is often, in my experience, skin deep.

What many organisations do in reality is plan, resource, and design something to a point of near completion - with most important decisions having been made and substantial sums of money being committed to a direction already, at which point they bring in patient and consumer advocates to make a contribution to validate decisions which have already been made. In this capacity, co-design and shared decision-making gets diluted to the point of check box consultation, rather than genuine engagement and the generation of valuable insight.

So where does money come into this, and why does it matter?

If you’re one of the few organisations that genuinely embodies in practice the principles of genuine co-design and engagement, then 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 contributed value and matching remuneration to acknowledge it.

Whether you do or not will dramatically affect the kind of advocates and thought-leaders in the consumer-led health reform and innovation space that you appeal to, and engage with. Critically, this will be what gives you access to engaging with the growing, and incredibly valuable number of professional patient and health consumer advocates.

Advocates in this space, like me, not only often have vast and varied experiences of complex lived-experience, but also have worked to build a comprehensive and practical understanding of advocacy-adjacent skills in clinical areas of health, public policy and legislation, health economics and law, health strategy and administration, and design and creative proficiencies which, when paired with their lived-experience, makes them powerful agents for change.

Developing skills like that, and taking the time to reflect on personal experiences of ill health in order to distil value and tangible insight takes a lot of time and effort - and like it did for me, develops into a professional undertaking.

Which is where paying us comes up. By offering little, or no remuneration for engagement you’re narrowing the availability of value and insight to what research has overwhelmingly indicated are demographics in which the driving motivations of advocacy are passion and the availability of time. Those two factors determine the demographics you're engaging with.

When it comes to health, this means many of the patient and health consumer advocates at the table will be disproportionately over-represented by the elderly and parents. For both these demographics, money often isn’t considered as important because their advocacy is undertaken on top of existing stable employment or following a life’s career and retirement. That lens has contributed to a model of engagement which traditionally has not needed to consider remuneration as key to engagement and distilling value.

By now I’m sure you can see the glaring issue in this model of engagement: advocacy as a professional pursuit for the young, and those with the most complex lived-experiences (and often therefore with the most value to contribute) who lack stability of employment and income due to the very experiences that qualify them to make contributions, is a profoundly nonviable way to make a living.

Picture yourself in your mid-twenties, trying to complete tertiary studies or a trade while working to support yourself to pay tuition fees and the cost of living in the midst of managing complex health issues.

If you were asked to give up a day of your time to attend a working group forum, or attend regular meetings as an advocate you’d likely weigh up whether your time was better spent working to pay for one of many expenses, or committing yourself further to studies that you’re already paying for instead.

Because of this, for most, it isn’t considered something worth doing - meaning that advocacy in health overwhelmingly excludes, or makes legitimately nonviable, the engagement with those of us with a wealth of lived-experience and passion under the age of 40.

The absence of proper remuneration from the perspective of business means that in the relationship with consumer advocates there is no actual transaction of value, and therefore no certainty that contributions made, and the people that make them can be held in any way accountable, or provide a means of verifying the quality and tangible value of their experience and professional development in the insight they share.

It’s against the interest of both the organisation or business, and patient and health consumer advocates for an advocacy-on-volunteering basis to become the dominant form of exchange of ideas and value.

It is especially exploitative of advocates when organisations and business stand to benefit financially for insight and experience surrendered by advocates and 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 emotionally and physically spent, and their time given with very little of value in return to encourage or support their continued pursuit of affecting meaningful change.

When I started on my journey as a lived-experience advocate I did it out of passion, but as my audience, and the interest in my insight grew I realised that for someone like me, which traditional models of employment are nonviable for due to the volatility of my health, this path could be one which comes to support my livelihood and growth as someone with a substantial base of lived-experience and an understanding of a variety of subject matters which act to empower and amplify the value of the advocacy and insight I can provide.

The first time I charged a fee for anything I did, was a daunting experience. Back then, the subject of money was an uncomfortable one. But since then, knowing that providing my insight is part of an exchange of value has acted to reinforce my own vigour in developing myself as a professional. It means I can ensure that the insight I provide through the services I offer are ones which I am accountable for. Ultimately it has been a grounding force that ensures I maintain a tangible connection to the communities and experiences I advocate for, and instilled accountability and responsibility in my actions and independence as consultant, advocate, committee member, and speaker.

Further, appropriate remuneration serves as a foundation on which to build an equitable balance of power between your organisation and an advocate. Vulnerability, whilst important in enabling a deeper and more meaningful expression of lived-experience, should not be used as leverage to create a substantial power imbalance as is often the case.

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 patients and health consumers, and advocates in all fields.

If we are not recognising and providing adequate remuneration for the value that advocates like me are offering in the health space then we will continue to see ‘co-design’ and ‘patient-centered’ regarded with derision and cynicism by the very community which is beginning to and, if engaged with properly, reinvigorate and drive the next revolution of health system and service reform and innovation on a domestic and global scale.

Paying us properly, like we already do for clinical and industry stakeholders, is a small price to pay for value that is changing, on a fundamental level, for the better the way we approach population health and well-being reform and innovation.


About the author

Harry Iles-Mann

Harry Iles-Mann is a Patient/Health Consumer Advocate and Speaker | Health Consumer Co-Design & Engagement Consultant | Health Strategist  (He/Him)