Promoting the value of Lived Experience and Co-production
What’s the story behind Voices for Improvement?
In 2019 we secured funding from the Health Foundation Q Community to explore how collaboration with patients could be strengthened and how the experience of patients could be made more central to improvement efforts in health care.
Working with a diverse advisory group which included members with Lived Experience we co-designed activities to explore where collaboration is done well and identify practice features and characteristics that make it meaningful.
What were the main findings?
We propose a fresh perspective and the opportunity to reset the relational foundation from which respectful practice and greater impact will thrive.
We have learned from our desktop research, conversations and co-design events, that renewed effort is required to tackle underlying and unaddressed issues of diversity, inclusion, race, power and paternalism. These issues are central to authentic efforts to embed collaboration between different people, teams, organisations and sectors. These are uncomfortable ‘live’ issues, amplified and further exposed by the COVID-19 pandemic.
We propose a refined mechanism by which people with experience of living with ill health, impairment or disability, including carers and existing Patient Leaders, can actively contribute to and lead change, improvement and influencing initiatives. The mechanism will be supported by an experienced, credible leadership and operational team actively seeking sustainable revenue to mitigate the risks of past initiatives where growth, reach and impact were limited by resource and operational constraints.
What was it like to work together?
"I’m excited to see the potential of an emerging credible network for passionate voices about user involvement - and one which will importantly be practically useful for those working in improvement efforts. I think this is where the gap has been historically - that of credibility and of practical use."
Rachel Killick (Advisory Group member)
"Working in a flexible way means that more people can be included, and we just need to adjust to people’s needs. Be open and honest about what we can and cannot do. Do not take it for granted that people will know what you’ve developed…. they need to come on the journey too!"
Keymn Whervin (Advisory Group and Associate Lived Experience Leader)
"Trust the process of coproduction even if it seems uncomfortable at first. Don’t be afraid to focus on very basic questions. Stay alive to issues such as a power, relationships, communication, values." Charlotte Augst (CEO, National Voices)
"An important learning for me is in codesign, there are many aspects of progress you can’t anticipate and understanding where the ‘edges’ are can help provide a sense of safety in which the emergent work can flourish so for example how and who will make decisions and when? What’s out of scope and off limits?"
Rachel Matthews (Head of Experience, National Voices)
What are we doing now?
Lived Experience Leadership and Strategic Co-production
The advisory group remain connected and because of the strength of the contribution and relationships built during this work, two members have evolved their roles with National Voices and have joined the team as Associates. Keymn Whervin is our first Associate Lived Experience Leader who shares a leadership role with Rachel Matthews (Head of Experience). Together they are promoting and modelling the benefits of shared leadership. Their work together and with partners is underpinned by the principles of co-production. Both Keymn and Rachel have extensive experience of working with people in different settings from strategy to community.
Relationships and opportunities to influence – coaching, mentoring and peer research
The ambition for Voices for Improvement is to build respectful relationships through which insight, knowledge and experience can be shared and used to improve health and social care. We know from our exploratory work that across our membership there are many well-established schemes to elevate Lived Experience and provide opportunities to influence and shape services. At National Voices we want connect, learn and grow a community of Lived Experience coaches, mentors and researchers who can take an active role to influence policy and decision makers. We particularly want to open opportunities for people in communities that are marginalised or overlooked.
Connecting a community of practice and learning
We are working with a small number of community partners and National Voices member organisations to start smallscale testing of how to make the connections, invite prospective coaches, mentors and researchers to learn with us and start bringing Lived Experience to the heart of decision-making.
Interested? Get in touch by sending an email with Voices for Improvement in the subject line to: firstname.lastname@example.org