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Putting people with CF at the centre of our decision making

This week is Co-production Week in the UK. Here, Tracy Turc-Milloy, Clinical Quality Improvement Manager, explains the concept of co-production and how we are working to put people with cystic fibrosis (CF) at the centre of decisions about our projects and strategies.

Close up of a woman's face. She is smiling.What is co-production?

Co-production is about producing services or projects in equal partnership with the people and parents who use them, as well as the staff who deliver them.

The co-production consultancy organisation Co:Create splits co-production into four parts: 

  • Co-design: shaping and planning together 
  • Co-delivery: working side by side in partnership 
  • Co-evaluation: reviewing together 
  • Co-governance: making decisions collaboratively.

This means that the people who will be receiving a service or are affected by a project are involved in every stage of its creation and delivery.

What we are doing 

Here at the Trust we are fully committed to increasing the power people with cystic fibrosis (CF) and parents of children with CF have to shape our work. We know our work will be most successful if it is led by the voices of people with cystic fibrosis.

As Don Redding, Director of Policy at National Voices, a coalition of 130 health and social care charities, explains: “We know that services designed with their users, where personal experience of managing our lives with our condition(s) is as valued as clinical or managerial health knowledge, work better, support us more and are more likely to achieve the outcomes we want and need.” 

Here are some examples of how we are involving people with CF in the development of our projects.

Quality Improvement 

The Trust’s Clinical Quality Improvement team is establishing a new Quality Improvement (QI) Working Group, which will use co-design to ensure people with CF and parents, healthcare staff and the Trust have equal say in designing our new Quality Improvement Strategy. 

They will also decide how the Trust’s ongoing QI projects – the PREMs survey and Staffing Tool – can have maximum impact on improving quality of care. Visit our QI webpage for information on how to get involved.

Clinical Trials Accelerator Platform

Man in casual clothes looks into microscope while man in lab coat looks onThe Clinical Trials Accelerator Platform (CTAP) seeks to increase participation and improve access to CF clinical trials. Involving people with CF in trials through the Patient & Public Involvement (PPI) workstream of CTAP is one of the major elements driving the programme. 

We have an established group of CF representatives (people with CF and parents of children with CF) ready to share their lived experience to support sponsors with trial design and delivery. Our mission is to advance CF care through clinical trials and unite people living with CF with researchers and industry to achieve a life unlimited by cystic fibrosis.

One of the researchers has described CF community involvement as “invaluable”. They said: “We gained real lived experience from people with CF focused specifically around our questions. The people that attended the focus group were engaged, open and brought extremely relevant experience and knowledge to the table."

UK CF Registry

The UK Cystic Fibrosis Registry is a secure centralised database that records health data on consenting people with CF in the UK. A recent Registry project was My CF Report, which was a printable patient summary of Registry data. 

The report’s purpose is to empower people with CF to manage their own condition and have meaningful discussions with their CF teams. It was co-designed with people with CF and health professionals to make it easy to understand and relevant. 

Community involvement across the Trust

We endeavour to involve community representatives in all matters that will ultimately impact on them. This includes co-production of information and clinical guidelines, as well as including people with CF as members of committees and working groups. 

We aim for people with CF and parents to inform the work of the Trust, and to facilitate co-production for any external associations and bodies that focus on cystic fibrosis.

To hear about opportunities to get involved in our work, as well as all the latest news from the Cystic Fibrosis Trust and the world of CF, sign up to our monthly newsletter. To sign up visit our consent portal to create your account.

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