Context
It’s crucial that the way we communicate is shaped by people affected by pulmonary fibrosis (PF), so everyone can understand it and wants to get involved to support us. In particular, we share information about research so that everyone affected by PF, regardless of their background, can hear about the amazing research that is being carried out.
People affected by PF have told us how important it is to them to find out about research, but that this information is often overly scientific and hard to understand. We need your help to shape our communications, so that they are straightforward and tailored to what people affected by PF want to hear about. We also want your help to influence our communication priorities and generate ideas about what we communicate as well as how we do it.
At APF, we:
- Produce information about research for those who are new to PF
- Create articles and updates that are of interest to everyone affected by PF
- Update our online study finder tool to share participation opportunities
- Share involvement opportunities and webinars
Why get involved?
- You can directly shape the communications we create and share with our audiences
- You can help us think about new ways to communicate about research
- Make our communications more accessible, engaging, and relevant to people’s experiences as a direct result of your involvement
- Learn about exciting PF research being done before anyone else!
In this role, you will be expected to…
- Attend an introduction session on Tuesday 3rd September at 11am lasting approximately 90 minutes (with scheduled breaks)
- Read and give feedback on our communications via email on an ad hoc basis (we estimate that this may be around 30 minutes once a month)
- Attend and constructively participate in online meetings every 3 months
- Read a small amount of paperwork in advance of meetings
- Let staff know if you need further information or support from us, or if your circumstances change
You do not need to have:
- Any experience or understanding of research
- Any prior knowledge of APF or the work that we support
We’re looking for people who…
- Are or have been affected by any type of Pulmonary Fibrosis as a person with a diagnosis, a carer, or a loved one
- Are preferably new to research, because you will provide the most insightful feedback about communications that aren’t easy to understand
- Are willing to represent and listen to the needs of a broad and diverse range of people affected by PF
- Can read and give feedback about our communications via email
Time commitment:
- Research information and communications to review: the amount of work will vary and be ad hoc, but we hope to share this with you once a month
- Online group meetings: approximately 60-90 minutes every 3 months
- A small amount of paperwork to read in advance of meetings: roughly sent out 2 weeks in advance of each meetin
- We’re running our first proper group meeting on Tuesday 3rd September at 11am
- This is the first time we have run a group like this, so we are aiming to pilot it for 1 year
We appreciate that commitments may be impacted by your health or the health of the person you care for, and we would always encourage you to prioritise your physical and mental wellbeing. We would be grateful if you can let the relevant staff member know if things change for you.
Interested?
Please email involvement@actionpf.org to request our short expression of interest form. Please return the form by Sunday 11th August.