Cancer Care Experience
Share your experience – it takes about 10 minutes
For patients, survivors, carers and family members. Health professionals close to care are also welcome.
Confidential – You can stop at any time – If you wish, we will invite you to a workshop or interview
Why this topic matters
Clear information & decisions
People need understandable information and a real voice in decisions.
Safe, respectful care
Communication, coordination and feeling heard shape the treatment experience.
Continuity & support
Smooth transitions and accessible support matter throughout the care journey.
What we want to learn
1. Access, diagnosis, information & decisions
First symptons or findings, waiting times, referrals, clarity of the pathway, understanding the diagnosis and involvement in decisions.
2. Treatment & care experience
Preparation, admission, surgery or other treatments, respectful care, safety, communication and organization.
3. Discharge, recovery & follow-up
Transition home, symptom control, clinical follow-up, access to key contacts and continuity of care.
4. Support & coordination across the pathway
Family and caregiver roles, coordination between services, available support, community resources and unmet needs.
What the literature highlights
Clear information and communication support understanding and confidence.
Access, coordination and continuity strongly shape cancer care experiences.
Patient feedback can identify practical priorities for safer, more person-centred care.
Published HCC patient journey map
Source: Wörns, M.-A., Burns, D., Paskow, M., et al. (2024). Patient Experience of Hepatocellular Carcinoma and Their Treatment Goals: An International Qualitative Study and Patient Journey Map. Advances in Therapy, 41, 3598–3614. https://doi.org/10.1007/s12325-024-02939-1
Selected reading
Wörns, et al., 2024
Patient Experience of Hepatocellular Carcinoma and their treatment Goals: An International Qualitative Study and Patient Journey Map. Advances Therapy, 41(09): 3598-3614.
Patel, et al., 2022
Understanding the patient experience in hepatocellular carcinoma: a qualitative patient interview study. Quality of Life Research, 31, 473-485
Bourque & Loiselle, 2020
Patients’ cancer care perceptions conceptualized through the Cancer Experience Measurement Framework. BMC Health Services Research, 22, 693.
How you can contribute
1. Interviews
One-to-one conversations to understand personal
experiences and priorities.
2. Group conversations
Small group discussions to
share experiences and identify common themes.
3. Co-creation activities
Collaborative activities to generate ideas and explore solutions together.
4. Prioritisation of needs
Helping to prioritise what
matters most to improve
living with liver cancer.
All activities follow ethical principles of respect, confidentiality and voluntary participation.
In collaboration with
Your experience can help improve liver cancer care.
Together we can put what matters most to patients at the heart of research and care.