Jo Barrett, CF Dietitian has been awarded NIHR (National Institute for Health and Care) Doctoral Fellowship. Jo’s research will explore the eating habits and physical activity of people with CF who are taking CFTR modulator therapies and their experience of weight gain. This information will be used to co-design a weight management programme with people living with CF and this programme will then be tested.
Jo is seeking people with CF to work with her in making shared decisions on all aspects of this research project by joining the More Life with CF patient advisory group.
What is the More Life with CF patient advisory group?
The More Life with CF patient advisory group are a group of people who have lived experience of CF. They will work with Jo Barrett, CF Dietitian and Lead Researcher influencing how the research is done, contributing to the writing of participant information, feeding back views on the research findings and how these should be used to influence CF treatments and how this is communicated to patients and the public.
Who can apply to be a member of the More Life with CF Advisory Group ?
Anyone living with CF can apply to be a member of the More Life with CF advisory group. Ideally, we are seeking people with CF are taking CFTR modulators and have a BMI of more 25kg/m2. No prior experience is necessary, you will already be a ‘expert’ in CF. Further training, as required, can be undertaken while fulfilling the role.
What will I have to do
The group will have on online meeting with Jo Barrett approximately every 3 months. You may be asked to do a small amount of preparation prior to these meetings such as read some information.
What will I be paid
You will be paid for your time to attend meetings, as well as preparation time and time to read and comment on any documents. Your refreshment, travel and parking costs will be reimbursed.
What difference this will make
Your involvement will influence how the research conducted from the perspective of people living with CF.
Jo is also looking for a person with CF to be a lead partner in this research project
What is the role of a lead partner?
A lead partner is someone who has lived experience of cystic fibrosis and would like to be involved in working closely with the lead researcher (Jo Barrett) in planning and co-ordinating all patient and public involvement activities. This will include co-chairing and planning advisory group meetings, developing and planning of community involvement with the wider CF community and contribute to steering group meetings as a member of this group. The lead partner will also work with Jo on writing regular updates and findings of the research for communicating the CF community.