How health consumer leaders are supported can have a significant impact on their experience. It influences the way people participate, the quality of insights that can be uncovered and can result in a positive long-term impact for the service and consumers. There is a huge opportunity for services to tap into the unique qualities that health consumers bring to the table by designing support systems that are emotionally supportive, Health Issues Centre’s new Training & Development Officer, Katherine Burnard, shares her insights.

I recently had the privilege of participating in Foundations in Patient-Consumer Leadership, a four-part training series facilitated by a pioneer in the concept of consumer leadership, David Gilbert.

In setting out to write about what I learnt from the training, I reflected that it was in fact how I learnt that has been the most impactful. There was something about these sessions that felt different. Comments were made by the group about how rich and rewarding the time spent together was. But as we approached the end of our final session together, we couldn’t quite put our finger on why?

As a facilitator who values process over outcome, I see one of the key ingredients was the way David supported the group to form and move through the sessions together – he demonstrated the value of collaborative leadership there in the room and provided the perfect example of what consumer engagement could look like in practice.

Recognising the qualities of a consumer leader.

In David’s words, a consumer leader is:

“Someone who has been affected by life-changing illness, injury, or disability who wants to change the lives of others with similar experiences”.

Or to put it plainly – someone who has been through stuff, who knows stuff, who wants to change stuff.

At Health Issues Centre, we tend to use a broader definition of a consumer leader to include any member of the community who is driven to influence change for the better in our health systems.

David sees the importance of accentuating the differences in the leadership qualities that people with lived experience bring to the table, versus someone coming with a purely professional lens. Both are equally important, but there is a difference. Consumer leaders with a lived experience have a ‘unique selling point’ and are of critical value to health services.

Consumer leaders:

  • Connect deeply to their own sense of humanity and connect on a deeply human and humane level to issues.
  • Have high levels of self-awareness, having processed what they have experienced (or are still going through).
  • Are sensitive to and acutely aware of power and the impact of power disparities.
  • Are comfortable showing vulnerability alongside tenacity and passion.
  • Understand the critical link between compassionate, trusting, respectful, collaborative relationships and successful outcomes.
  • Role model the style of communication that consumers hope for– they listen, check assumptions, act with curiosity and explorative intention.
  • Hold difficult conversations and ask good questions as a tool to influence and navigate bureaucratic systems.

The training was attended by a group of 10 passionate people who brought incredible breadth and depth of collective lived and learned experience in consumer engagement. One of the benefits of an online workshop series was connecting with geographically diverse peers, having attendees from Victoria, New South Wales, and New Zealand whilst David facilitated from the UK.

Most of the group had personal stories of navigating the health system either for themselves or whilst supporting loved ones. Three of the group held roles as consumer representatives whilst the remainder were in staff roles that had a focus on consumer engagement. The qualities above were palpable through the Zoom screens and this was particularly so from those in the space with their ‘consumer’ hat on.

Creating supportive environments for consumer leaders.

A key focus of the training was recognising how environments can be enabling or disabling, whether that be for someone experiencing illness and seeking care, or for a consumer leader trying to create change in a service. Health organisations have it in their power to create environments that set consumers up for success or maintain barriers that will ultimately prevent them from tapping into this critical human resource.

When organisations consider supports that should be in place, this needs to go beyond the practicalities of receiving agendas on time and being on the correct email lists (although these are important). Consumers should be empowered to thrive in their roles through the establishment of systems that provide emotional support.

Emotional labour and emotional support were central themes in our discussions. Emotional labour is an often-invisible process that consumers are going through to manage emotions, to self-regulate and present favourably to decision-makers so they can perform in the role. This is a product of the passion, deep personal investment, sense of powerlessness, history of traumas related to accessing healthcare, and deeply engrained systemic barriers to health that are inextricably part of a consumer representative’s identity and can lead to burnout.

Organisations can minimise the emotional labour experienced by consumer representatives in these four ways:

1. Creating psychological safety – Psychological safety is created when people who hold the power in a space show genuine care and concern for others, ensure consumers feel valued for their contributions, ask questions, provide consumers multiple channels to share their thoughts, and encourage others to disagree with them or bring a critical lens. It also involves setting clear expectations about roles, honouring commitments and being transparent about changes and decision-making processes.

What that looked like in the Foundations in Patient-Consumer Leadership training:

  • David didn’t proclaim to have all the answers. He acknowledged with openness and delight when group members offered new information or a different perspective that he hadn’t considered before.
  • There was a level of respectful candour which enabled us to air when we disagreed or were feeling perplexed. For example, at one point the group’s language fell into the trap of “us” and “them” and one of the participants paused to ask – “hang on, who’s ‘us’?” It prompted the group to reflect on the language we used and then to be intentional around centring the consumer perspective and moving from “us” and “them” to “we”.

2. Acknowledging trauma – Interactions that are influenced by trauma-informed practice reduce opportunities to trigger or re-traumatise consumers. This involves acknowledging the challenges consumers have faced, consumers being empowered to have a voice, collaborative working and building trust. Working in this way means understanding that consumers will be affected by off-hand comments they hear in meetings, they will feel pressured in the moment when they are advocating on issues they care deeply about, and they will leave wondering if they’ve said the right thing. Having adequate supports in place will minimise the negative impact of this.

What that looked like in the training….

  • We would start the sessions with one minute of quiet, an opportunity to arrive in the space and pause after rushing from the end of our working days. David would then read us a poem before we did our check-in where each shared how we were really feeling in that moment.
  • At the start of one session, a few of us shared that we were coming into the space with a lot ‘life stuff’ that was weighing heavily on our minds, and others shared they were feeling particularly drained from ‘work stuff’. There were a lot of words of support in the chat, there was permission to be quiet and not contribute to conversation, there was understanding.
  • As the facilitator, David made a choice to change the focus of the session away from the heavier topic of ‘emotional labour’ that he had planned as he recognised the collective vulnerable state of the group.

3. Forming productive relationships – It’s imperative that organisations foster productive relationships between consumers and the staff team, so consumers don’t have to go it alone. This looks like staff demonstrating allyship towards consumers, walking in solidarity with them and championing their cause. It means enabling opportunities for consumers to build a team around them, to strategise and debrief together.

What that looked like in the training….

  • Four of the group participants were from the same health service – two were consumer representatives, the other two were staff responsible for consumer partnerships. Being removed from their typical environment, away from the hierarchy and bureaucracy, they remarked on how as a by-product of the training they were developing stronger relationships and getting to know each other ‘as humans’.
  • By the final week the four had developed a comradery and alliance. They were committed to taking bold, tactical actions in their health service to flip the focus away from the needs of the service, towards what consumers are saying matters to them.

4. Relating authentically – It can be so easy for people to feel swept along at the rushed pace of your workplace, to constrict themselves to the formalities of the environments they are in, to become fixed on an agenda item rather than noticing the people in the room. Higher performing teams are those that break down the stiff, impersonal, hyper-professional pretence and can find opportunities to joke with one another, to give compliments, to express sarcasm, and to vent. Consumer representatives and staff alike need to be able to communicate authentically and not shy away from the bad stuff.

What that looked like in the training…

  • This group developed a ‘come as you are’ approach, there was a level of understanding that we are all people with busy, complicated, full lives and we gave each other permission to show up in whatever way we needed.
  • As we became more familiar with one another, there was laughter, collaborative poems being created in the Zoom chat, jokes made about wishing we were at the pub. There were a few spiralling rants, there were some tears, there were some disagreements. All of it was fair game.
  • During one check-in we heard from a few group members that they had felt really challenged by the conversation during the previous session. Being able to express that was a gift to the group in demonstrating vulnerability, naming difficult emotions, and not allowing these to fester or bubble over.

Moving your health service beyond the way things are always done.

You may be reading this thinking, ‘well that all sounds nice, but I just can’t see that happening at my organisation, we’re too busy, too stretched, too stuck in our ways…’ And this is understandable. Taking this sort of approach can come down to changing the culture of an organisation and we all know that that is no mean feat. This is challenging work, but the benefits will ultimately be far reaching.

You might be encouraged to hear that David shared with the group that when he recently left his role as Patient Director in the NHS, one of his operational managers said to him “I’ve learnt how to be more vulnerable in meetings” because of David’s leadership approach. David guessed that what he meant by this was “now we have better conversations, we’re more authentic, we talk about stuff.”

And if you think the minute of silence at the start of meetings is way too ‘out there’… David said this became part of the way they started meetings in his health service.

Doing things differently is possible, even if it feels uncomfortable or strange to move away from the way things have always been done. Each of us hold the power to create change in the way we support and partner with consumers.

If your organisation is ready to take the next step in evolving your approach to consumer engagement, Health Issues Centre (HIC) is available to support you. HIC draws on a broad range of literature, best practice examples, and thought leadership in consumer and community engagement when designing our training programs. We also bring learnings and insights from the real-world experiences of our team and are always on the lookout for new perspectives and ways to approach this work. Please reach out to to discuss how we can create a bespoke program that meets your organisation’s training and development needs.

David Gilbert was the first Patient Director to be appointed in the NHS at Sussex MSK Partnerships and has been championing the importance of meaningfully engaging with consumers for over 35 years. If you aren’t familiar with David’s thoughts on consumer leadership, I implore you to read his work. You can start by reading his free eBook, The Patient Leadership Triangle, which provides an account of the work David has done to embed a co-production approach in his work at the NHS.