I have been involved with the 4D PPI Picture Project for a while now since my immunotherapy treatment ended in November 2022 – they have recently asked me to become a member of the Workpackage 8 Team tasked to disseminate the findings of the team to the wider communities. Excitingly, I will be tasked with writing the posts on their website which will combine my own personal experiences and try to align with the research findings.
My cancer journey and advocacy work could be incredibly valuable to the 4D Picture Project, especially given its focus on improving patient-centered decision-making in cancer care.
The 4D PICTURE project—short for “Design-based Data-Driven Decision-support Tools: Producing Improved Cancer Outcomes Through User-Centred Research” is a European initiative aimed at enhancing decision-making processes in cancer care.
Coordinated by Erasmus University Medical Center in Rotterdam, the project brings together a consortium of 16 organizations across eight countries. (UK, Austria, Belgium, Denmark, Germany, Netherlands, Spain, Sweden).
Cancer patients often face complex treatment decisions involving various risks and impacts on survival and quality of life. To address this, the 4D PICTURE project focuses on developing data-driven decision-support tools (DSTs) that incorporate patient experiences, values, and preferences. These tools aim to empower patients, support personalized care, and improve health outcomes.
Key components of the project include:
• MetroMapping Methodology:
A framework designed to redesign care pathways for patients with breast cancer, prostate cancer, and melanoma, integrating novel DSTs to better predict treatment outcomes.
• AI-Based Conversation Tools:
Development of tools like the “Metaphor Menu,” which utilize artificial intelligence to facilitate meaningful discussions between patients and healthcare providers, ensuring that individual preferences are considered in treatment planning.
• Ethical and Social Considerations:
An embedded ethics approach ensures that the development of these tools addresses social and ethical issues, aiming for equitable and responsible implementation in clinical practice.
The ultimate goal of the 4D PICTURE project is to improve the cancer patient journey by providing personalized decision-support tools, thereby enhancing shared decision-making and respecting individual patient preferences throughout the care process.
So far I have contributed 2 blogs which have helped the academic team and other patient contributors understand my own experiences. Those experiences range from the Good to the Bad and also the downright Ugly!
Here are the links to the blogs that have been posted on the 4D Picture Project Website.
Here’s how my experiences could make a meaningful impact:
1. Patient Perspective & Real-Life Insights
• Decision-Making Process:
My experience navigating complex treatment decisions (immunotherapy, surgeries, and being NED) offers firsthand insight into how patients weigh survival, quality of life, and side effects.
• Shared Decision-Making:
The project aims to refine tools that help patients and doctors communicate effectively. My perspective can highlight what worked—and what didn’t—in my interactions with healthcare providers.
2. Melanoma Advocacy & Awareness
• Specific Cancer Knowledge:
As someone who’s been deeply involved with Melanoma UK and raising awareness about UV dangers, my insights could help tailor decision-support tools for melanoma patients specifically.
• Public Speaking & Media Presence:
My experience with TV, radio, and press can help translate complex medical concepts into patient-friendly language, a key challenge for such projects.
3. Ethical & Emotional Considerations
• Mental & Emotional Impact:
The project explores not just clinical outcomes but the emotional and social effects of cancer decisions. Sharing how I have managed uncertainty, hope, and fear can guide more compassionate care pathways.
• Long-Term Survivor Insight:
Being NED after stage 4 melanoma offers a rare long-term view of survivorship—something that could help shape tools that consider life after treatment decisions.
4. Engaging as a Stakeholder or Advisor
• Join Patient Advisory Boards: Many EU projects seek patient representatives to validate tools and give feedback.
• Contribute to Storytelling Elements:
Tools like the “Metaphor Menu” use patient narratives to help others understand complex treatment decisions—your story could be invaluable here.
• Help Identify Gaps:
With my unique medical history (e.g., living without a pancreas and spleen), I can highlight gaps in existing support tools for patients with complex cases. All cancer patients have individually crafted care pathways – no one of us is the same, but we are all treated the same.
