Why communication training matters in cystic fibrosis care
At the heart of navigating CF care is the quality of communication between people living with CF and healthcare teams.
Cystic fibrosis (CF) treatment has been transformed in recent years. Breakthrough medications called CFTR modulators have dramatically improved health outcomes and life expectancy for many people with CF.
But better treatments haven’t made CF simple. Living with CF still means making constant, complex decisions — about medications, therapies, lifestyle, and goals.
And as treatments evolve, new challenges emerge. Some people experience unexpected side effects or emerging disease complications (such as CF-related diabetes and obesity – amongst other clinical challenges). Others, who don’t benefit from the newer therapies, face their own struggles with motivation and engagement.
Every person’s experience is different – and communication plays an essential role in supporting positive, impactful partnerships between healthcare teams and people living with CF.
The communication gap in CF care
Research shows that communication gaps are common in clinical settings – and CF is no exception.
People with CF and their caregivers often experience concerns and barriers that go unspoken during appointments. Clinicians, meanwhile, may feel they do not always have the tools or training to draw these out when also faced with time restrictions and competing clinical priorities.
When perspectives aren’t shared, opportunities to personalise care are missed – and this can affect how well treatments work, and how people living with CF feel day to day.
People with CF, caregivers and families may feel unheard, or unsure how to raise concerns and questions. They may feel that decisions are made in isolation rather than involving them as partners in their care.
Healthcare professionals want to provide the best possible care – but without structured communication skills, it can be difficult to consistently explore what matters most to the people they support and to factor those perspectives in when decisions are made about CF treatment.
The healthcare system benefits when care is better coordinated, when adherence to treatments improves, and when people feel genuinely supported to manage their health.
A shared decision-making approach – where patients, caregivers, and clinicians work together as a team – has been shown to improve outcomes. But this kind of partnership doesn’t happen automatically. It requires deliberate effort, and the right skills.
Australia is missing a critical piece
Despite the evidence for communication-centred care, Australia currently has no CF-specific communication training program for healthcare teams.
This means that right now, the quality of communication in CF care depends largely on individual clinicians’ experience and instinct – rather than a consistent, evidence-based approach that teams can learn and practice together.
Changing this is not just desirable. It’s critical.
A proven model — developed in the US, now coming to Australia
Recognising this unmet need, in 2019, the Cystic Fibrosis Foundation (CFF) in the United States partnered with the Academy of Communication in Healthcare to create the Partnership Enhancement Program (PEP).
PEP is a structured communication training program designed specifically for CF multidisciplinary teams. It focuses on three core skills:
- Building trust – creating a safe space where honest conversations can happen
- Fostering open dialogue – encouraging people to share what’s really going on
- Setting shared goals – making decisions together, based on what matters to the individual
In the US, the PEP program is delivered as a one-day training session, followed by a virtual check-in three months later. It includes resources to help teams integrate these skills into everyday clinical practice.
PEP has now been embedded across CF teams throughout the US, with demonstrated improvements in communication skills, partnership-based care, and patient experience. It has also evolved to include tailored training for people living with CF and their families, helping them to engage more confidently and effectively with their healthcare team.
It’s time to bring PEP to Australia. Ensuring Australians with CF can access this model is timely and necessary. In a first-of-its-kind initiative, a team of Australians have partnered with CFF to bring PEP to Australia.
Why adapt PEP for Australia?
The US and Australia share a lot in common – but our healthcare, geography, and culture have their own character.
Australia’s public health system, the distances many people travel to access specialist CF care, and the diversity of our communities all influence what good communication looks like in practice. A program designed for the US context won’t automatically translate here.
That’s why PEP-Aus is being co-created with the Australian CF community – not simply adopted. People living with CF, caregivers, and multidisciplinary healthcare professionals from across Australia are involved in shaping the program from the ground up, ensuring it reflects what Australians living with CF and their healthcare teams actually need.
What we’re working toward
PEP-Aus has the potential to support a meaningful cultural shift in CF care in Australia – one where people with CF, caregivers and families are empowered as genuine partners, and where every clinical interaction is an opportunity to understand what matters most to the person in the room.
This is about more than communication skills. It’s about reframing the relationship between healthcare teams and the people they serve – building a model of care grounded in trust, respect, and collaboration.
[Take a look at our latest work →]
Partner With Us
PEP-Aus draws on lived experience and multidisciplinary, cross-sector collaboration – because to truly empower those impacted by CF, we need to work together.
If you’re a person with CF, a caregiver or a family member, a CF healthcare professional, or if you represent an organisation working in the CF space, we’d love you to be part of this initiative. Check out how you can partner with us and get in touch.
[Explore how you can be the PEP-Aus community →] [Complete the Partner Contact Form →]