We agreed on practical commitments such as using clear communication without jargon or acronyms, supporting individual access requirements, sharing documents two weeks in advance of meetings, group members arriving at meetings fully prepared, and switching on our cameras during online meetings for authenticity, engagement and friendliness. After three meetings and several drafts we now have a Ways of Working agreement which guides our approach, supports members of the Working Groups to engage fully, and holds us all to account.

Mala, a Lived Experience Working Group member, said: “I have really appreciated being involved in the Working Group and the care, thought and respect that has gone into creating shared spaces where lived experience is genuinely valued. It already feels like the partnership is shaping the research in meaningful ways, particularly by grounding discussions in real world experiences and helping to surface issues that might otherwise be overlooked.”

We meet every two months and are collaborating actively with the Working Groups to agree the studies we will prioritise working on in the Care Work Partnership. We are conscious that time and expertise is valuable, so group members are rewarded for this at National Institute for Health and Care Research (NIHR) involvement rates. We will use a training budget to support the learning and development of Working Group members across the five years of the Partnership, equipping them with relevant skills and supporting new ideas that contribute to research processes. We’ll be sharing more blogs about the Working Groups’ achievements, including our process of working together over the longer-term Partnership and detailed reflections from Working Group members on their expectations and roles within the research.