A Tale of Mutuality and Reciprocity – The Path Forward for Engaging with People with Lived Experience

In this insight, IJIC Lived Experience Editor Mick Kunze reflects on his experience of ICIC26 and considers the future of lived experience within the integrated care movement, calling for relationships built on mutuality, reciprocity, care and genuine human connection.

From Birmingham back to reality – so what?

I am writing this two weeks after the International Conference on Integrated Care (ICIC 2026) commenced in Birmingham, England. The excitement and nervousness, as well as the giddiness of being surrounded by so many amazing people have finally subsided to a certain degree – and the day-to-day life has returned. Much can be said about the amazing connections I’ve made at the conference, all the learning I’ve taken away, but what really remains with me is a major question: the “so what?” Of course, that may be a very broad question, but in this little blog, I want to focus primarily on the future of lived experience in the integrated care movement. So, let’s begin with the most fundamental question:

Lived experience – what kind of relationship?

The presence of lived experience at ICIC26 was prevalent throughout the conference. From lived experience-led panels to site visits and the first-of-its-kind lived experience zone at an ICIC conference, lived experience was represented, integrated, listened to, and supported. As an individual with lived experience myself, who also had the opportunity to share a little bit about my experience at a panel, ICIC26 was a truly phenomenal, dare I say life-changing event. As I’ve said during the conference, the conference and all its participants have truly made me feel at home within the integrated care movement.

As I was reflecting, I kept returning to the question of the value of lived experience in the movement, though. And, at least for me at this point, it is a question of the kind of relationship the integrated care community has with people with lived experience.

Basically, it comes down to this: what is the value of people with lived experience, how does the movement support those with lived experience, and what (if anything) are the benefits for people with lived experience? Let’s look at these in turn.

Lived experience – the value for the movement

I think this is an easy one, truly. The value of lived experience rests in its ability to honestly reflect on what’s working and what is not working, what design changes may be made to enhance supports, and where gaps exist in existing structures and processes. From my observations at ICIC 2026, the movement has a clear understanding of what lived experience can contribute in all its facets (co-design, co-production, involvement, etc). I have no doubt this value will develop into a deeper integration of people with lived experience – in everyday work, in the International Foundation for Integrated Care (IFIC), and in future conferences.

Lived experience – the supports

This year, for the first time, there was a real emphasis on supporting people with lived experience at the conference. While many may not have noticed, IFIC went to great lengths to provide supports, as did many people who involved people with lived experience. For me, for instance, the existence of the lived experience network zone was a really great development. I was also supported by many participants to ensure a well-rounded and healthy experience could be had at the conference. And, last but not least, I received plenty of support from conference participants after my panel contribution. All of this speaks to the holistic support for people with lived experience as I encountered it at the conference. Of course, more complex engagement may require further nimbleness and flexibility, but I have no doubt that IFIC and conference participants will be up to this task!

Lived experience – what’s in it for us?

This may be a contentious question, but, I do think, a relevant one. People with lived experience have contributed significantly to the movement: we have made ourselves available and vulnerable; we have shared our thoughts and insights; we have made demands and suggestions; we have done significant emotional, intellectual, and even physical labour to advance integrated care. So what is in it for us?

Well, unsurprisingly, I don’t have the answer, but I want to contribute to this issue with some words of caution. Do not treat people with lived experience like professionals! One of the things I am most afraid of is the professionalisation of people with lived experience. What I mean by this is that people with lived experience should not be seen as professional knowledge-keepers, but as humans first! Payment for our contribution would be nice, but that does not negate the movement’s responsibility towards us as humans.

In a similar vein, do not treat our relationship as transactional! Again, our participation is often associated with a lot of risk to our personal wellbeing. Payment or in-kind offerings do not suffice for the labour we put into this work. And, I would guess, transactional gains are not the primary motivator for our participation – they certainly aren’t for me.

Yet, the movement has to really carefully think about what is in it for people with lived experience. Our contributions aren’t taken for granted, and that’s much appreciated. But are our needs, wants, and desires met? Is the relationship built on mutuality and reciprocity? Of course, as I’ve pointed out, our value is recognised and plenty of supports do exist. What I am asking, of the movement and all its participants, is to carefully consider what happens with people with lived experience when they are not replying to emails, participating in surveys, helping co-design programmes, or attending conferences, or even receiving care. In other words, what can the movement do to advance the health and wellbeing of people with lived experience each and every day?

What is to be done?

Finally, I want to share some brief thoughts on what you, dear readers, may be able to do to support people with lived experience in the future, and, perhaps, to answer the above-posed question. For the (health and social care) system itself, as well as for researchers and policymakers, an important element will be to not take that which people with lived experience share for granted. This, too, means that careful consideration should be given to ensure mutuality in the relationship being built. This can take several forms, of course. From my experience, again, it is about human connection, genuine listening and understanding, and doing with. Be open-ended in your queries, reflect on what has been shared, ensure an iterative process—even if it means key tenets may need to be adjusted.

For clinicians in the broadest sense, the message is very similar: listen; check your language (patient? client? person?); check your (inherent and subconscious) biases; be creative in your approaches; meet the genuine needs of the person during and after interactions; and approach with curiosity and care.

As a last comment, it is worth reiterating that you are often supporting people when they are at their lowest – when they have received a new diagnosis, when they have relapsed, when they have no other way to turn than to come to you. This vulnerability is a gift given to you. Please treat it as such.