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The real work of change

  • Posted by Annie,
  • Deputy Director,
  • in Listen up,
  • May '24

Working inclusively in health research means changing research cultures.

Vocal has supported the Medical Research Council (MRC) to develop a new strategy for involving the public in their research. This followed our Landscape Review of public involvement in non-clinical research. Our work was guided by an External Advisory Group (EAG) who brought diverse experiences as researchers, members of the public, community leaders and sector specialists.

Involving people more in decision-making about health research is now a priority for many research organisations. In practice, valuing people’s lived experience and different forms of knowledge involves changing the culture in research organisations to become more inclusive.

The process of change involves openness and creating an environment for productive disagreement where different ideas and perspectives can be respectfully and honestly shared and exchanged

—Emma Dorris, Researcher, EAG member

To understand what was important for people and their views on what should be in the strategy, we ran workshops with over 140 UK and international attendees including researchers, research staff, external partners such as patient organisations, patients, public contributors, and other research funders.

In each workshop participants discussed what they wanted the MRC’s vision and ambition to be. They also highlighted the changes that were needed in research funding and culture and the support that would be needed to implement these changes.

A clear message from our very first workshop was that participants wanted to see real change and not be having the same conversations in a year. Across all the workshops people wanted; more public involvement in leadership, clear expectations supported by funding, public and patient views embedded in research culture, and for a diverse range of people to be part of the MRC’s work.

The workshops gave Vocal, the EAG and the MRC lots to reflect on together and informed our subsequent discussions on the level of ambition that was needed in the new strategy to facilitate real change. The EAG emphasised the importance of making significant and visible commitments to change.

Image showing a group having a discussion at a Vocal event

Our strong recommendation was to avoid being stuck in the loop of “correct terminology” such as ‘involvement’ and ‘engagement’ and, instead, focus on people and the underpinning values

—Emma Dorris, Researcher, EAG member

The terms ‘public partner’ and public partnerships that have been used throughout the strategy emphasise the collaborative nature of the relationship.
Whilst discussions were often complex, conversations allowed people to be honest in expressing their own positions and limitations, which helped to foster a collective appreciation of people working together to make significant change.

We learned that reflective practice is a key part of the process of making changes in partnership with others. Appreciating how people are feeling and experiencing things is key to making progress together.

—Mary Derrick, Medical Research Council

The value of working in this way has paid dividends. The MRC’s public partnerships draft strategy was put out for consultation in January 2024 and received 354 responses, of which 40% were from public partners. Overwhelmingly, the strategy was endorsed, with 87% of respondents agreeing with it. The strategy will be published in the summer and we look forward to its implementation.

Find out more about the experience of Nadine, CEO of Mabadiliko CIC and member of the EAG, in this blog published by The Medical Research Council.