Why Participation Matters
What we’ve learned so far in a move towards a new mantra for health and care charities
Collaboration is core to everything we do at the New Citizenship Project. It’s in the way we convene workshops and conversations, how we maintain our client relationships, and indeed how we’ve developed our thinking on some big questions over the years. In the steps we’ve taken towards a collaborative innovation project exploring participation in health and care charities, we’ve already learned a lot through the conversations we’ve been part of. In this blog, we share that learning and invite others to join the conversation.
Towards a new mantra
In our last blog, we made the case for a new mantra for participation in health and care charities.
“When you need us, we’re ready… but if you’re ready, we need you too”
This aims to do two things.
First, it acknowledges the vital role of health and care charities in supporting people affected by health conditions, while also recognising that for many people, having meaningful agency over things that matter can in fact form an important part of that support.
Second, it builds on an existing maxim that is becoming increasingly well-observed in many health and care charities: “nothing about us without us”. This is often used to make the case for involving people with lived experience more in shaping how charities are run, but less so for involving people more in how charities go about achieving their mission. By proposing a new mantra, we hope to provoke a broader shift in perspective that encourages charities to see participation as a crucial way of opening up to more voices and therefore, more ways of achieving their mission.
Where we’re up to
We’ve shared this thinking with a number of charities, it’s clear that the idea resonates.
That said, there are some significant challenges to overcome. This is why we’re continuing to explore the possibility of working collaboratively across the health and care sector, to figure some of this out together through a collaborative innovation project. As a precursor to this, we invited a few charities to join an informal Zoom call to share experiences and discuss the ideas further.
One Thursday lunchtime
We were joined by friends from across a range of health and care charities for a fruitful conversation on all things participation.
We started by recapping some of the challenges we’ve seen in health and care charities through our work, and the questions we’re keen to explore in response:
1. “Our mission is just so big — people just can’t take it on at that scale”
How can we make our mission feel like something everyone can contribute to?
2. “People need our support right now — it’s difficult to expect more from them”
How can we create participation opportunities that are right for people’s lives and situations?
3. “Our volunteer opportunities are quite intense — not many people are getting involved in what’s on offer”
How can we broaden the ways people can shape our organisation and contribute to our mission?
We also set out some of our thinking on the value and meaning of participation: specifically, our view that becoming a truly participatory organisation means more than sharing power over decision-making (as important as this is).
Of course, most people value having a voice and influence over institutions that are important in their lives. But to fully embrace the spirit of doing things with people and not just for them, the best participatory organisations go further — they create outward-facing opportunities for people to channel their creativity, ideas, empathy and passion into a shared mission and purpose.
We created a simple prototype of a diagnostic tool to help map different types of participation opportunity.
This tool aims to make visible the full range of ways that organisations can serve as a platform for participation, rather than treating co-production as the gold standard that every team in every charity should aim for.
What we learned
We wanted to get sharper on what this idea of participation in the mission of health and care charities really means for the organisations doing the work. We took three main questions into the discussion:
- Are the challenges we’ve identified the right ones? Are there others?
- What is the prize? What can be achieved by working in this way?
- Do the limits presented by different medical conditions change the way we need to think about what participation looks like? How so?
The first challenge — “our mission is just so big” — is one that’s held by many charities, not just those in health and care. But specifically for our friends in cancer and other health charities, there is a strong feeling that there is a gap to bridge between the ultimate aims of a charity — i.e. finding treatments and cures, which will be achieved in a laboratory — and the contributions of supporters.
Our learning here is that there is a creative challenge to linking the ultimate impact of a charity with the contributions of people — whether it’s their time, money, energy or ideas. This might also prompt charities to think more holistically about their purpose and activities: after all, with the exception of pure research charities, most devote resources to helping people live the best lives they can when they have a condition, as well as seeking a cure. Viewed this way, the broadness of the mission becomes an opportunity rather than a barrier: there are potentially lots of ways, big and small, for people to contribute. The challenge is to find the ones that are right for your charity and your supporters, and that clearly bridge individual contributions to the wider mission.
The second challenge — “people need our support right now” — sparked a lot of discussion. It resonated with those who often work with people who are having their lives turned upside down by a diagnosis. It’s understandable to feel that it’s unrealistic or even inappropriate to invite people to participate until they have been successfully treated. Sadly, this isn’t the reality for many conditions. And as was shared in our discussion, there are in fact plenty of examples of people actively participating and contributing at all stages of diagnosis and treatment, even those with life-limiting conditions.
To paraphrase our previous piece: “The challenge is to leave the door open, not try to force people through it.” Many of those who joined the call are already doing this in many ways. One key insight here is the need to create structures for participation that enable people to take part in accessible, inclusive and appropriate ways, and acknowledge that this will be different for different people, even with the same condition.
The third challenge — “our volunteer opportunities are quite intense” — resonated for two reasons. First, because there is a desire to simply have more opportunities for people to take part in stuff, including in less intensive and more flexible ways. But second, more specifically, because this might be a way of inviting in and involving a more representative cohort of supporters, including people whose ability to participate in conventional structures and roles is limited by the condition in question. Reconsidering the assumptions that existing participation opportunities and roles are based on is vital to every health and care charity wanting to ensure that its work is reflective of the people and communities affected by a given condition.
Once again, our colleagues from different charities are already exploring more light-touch and varied opportunities for participation. In support of this, the ‘quadrant’ tool we shared above proved useful in our conversation, helping to understand what kind of participation is currently on offer, and where there are opportunities worth exploring.
There was an additional challenge that became apparent through our conversation, summarised by one of our participants: “I might lead the team, but participation happens everywhere, and not everyone has the same experiences. We need a common toolkit.”
Whereas the first three challenges are largely about charities looking outwardly at the participation opportunities they are creating, this final challenge is about looking inward and asking:
How can we create the conditions for participation to live and breathe throughout our organisation, not just in pockets or siloes?
This challenge comes up a lot in our work with organisations of all kinds, from health and care charities, to cultural heritage organisations, to local and national government. Taking a whole-organisation approach is vital to creating a thriving participatory culture.
Our starting point, however, is less about creating a common toolkit in the form of a set of resources to use or processes to follow, and more about building the belief, knowledge and confidence in people across the organisation to work with people differently.
This brings us back to one of the aims of our conversation; understanding what is to gain from taking this approach. What is the prize?
For us, it’s two-fold.
First, by addressing the first three challenges, health and care charities can create more and more diverse participation opportunities, and therefore more ways to achieve their mission.
Second, by taking a whole-organisation approach to participation, these organisations can make the work itself more meaningful, fulfilling and motivating for all involved — staff and supporters alike — which in itself works to support the cause.
What next?
Bringing together a few friends from different charities to explore these shared questions has reinforced our belief that a longer-term programme would be a huge benefit to the organisations involved, and the sector as a whole. We’d love to continue to work on these challenges, test out new approaches to participation and build on the great work that is already happening.
So, if you have any reflections on what we’ve shared, please leave a comment as we’d love to hear from you.
And, if you work in a health or care charity, and are interested in getting involved in any future conversations or collaborative projects, please get in touch — we’d love to chat.
