Periodic Reporting for period 2 - 4D PICTURE (Design-based Data-Driven Decision-support Tools: Producing Improved Cancer Outcomes Through User-Centred Research)
Berichtszeitraum: 2024-04-01 bis 2025-09-30
SUPPORTING PEOPLE WITH CANCER TO MAKE BETTER TREATMENT DECISIONS
When someone is diagnosed with cancer, they are often faced with difficult choices. Chances of survival may differ by treatment option. And treatment options may also bring side effects that affect daily life, wellbeing, and independence. Making sense of treatment options can be overwhelming for patients, their families and their care teams. Moreover, the complexity of patients’ care paths makes it difficult for all involved to oversee all the steps, the healthcare providers who are involved, and the decisions that need to be made.
DECISION-SUPPORT TOOLS may help. These tools are designed to give patients clear and personalized information. Their aim is to support patients in better understanding the treatment options and in taking an active role in deciding about their treatment. Used well, such tools can support personalized care, improve health outcomes and can make healthcare more fair and inclusive. However, many tools fail short. They often focus only on survival and pay little attention to, for instance, quality of life. Decision-support tools are not yet widely used in everyday clinical care.
WHAT IS 4D PICTURE?
The core of the 4D PICTURE project is a new way of looking at cancer care: not just as a medical process, but as a lived experience. The 4D PICTURE PROJECT aims to do this by improving the use of decision-support tools. Its main goal is to redesign cancer care pathways and to integrate advanced, evidence-based decision-support tools directly into clinical practice.
By combining datasets of vast numbers of patient stories of their experiences, large clinical data sets, and innovative design methods, 4D PICTURE seeks to support patients and healthcare professionals in making better-informed decisions together.
To do this, the project further develops a promising service-design approach called MetroMapping (https://metromapping.org/en/(öffnet in neuem Fenster))
RETHINKING CANCER CARE WITH METROMAPPING
MetroMapping is a visual and human-centered method for understanding and improving care pathways. Inspired by metro maps, it shows the entire cancer journey in a clear and intuitive way.
MetroMapping captures:
• Patients’ and professionals experiences of care
• The full treatment journey, from diagnosis onward
• The information needed at each decision point
• The persons involved in decisions and care (patients, family members, healthcare professionals)
• The context, i.e. physical surroundings such as waiting rooms, objects (brochures, medical devices) that may impact decision making.
By making invisible problems visible (such as missing information or poorly timed decisions), MetroMapping helps teams redesign care pathways so they better support patients’ needs. The visual style of MetroMapping makes it easy to use, even for people with different levels of health literacy, and encourages collaboration across medical disciplines. (see Figure 1)
NEW TOOLS TO SUPPORT BETTER DECISIONS
In addition to MetroMapping, the 4D PICTURE consortium develops two types of decision-support tools:
1. PROGNOSTIC TOOLS
These tools help patients and healthcare professionals explore how different cancer treatments may affect both survival and quality of life. Using reliable clinical data and transparent prediction models, the tools present information in a clear, user-friendly way. The aim is not to tell patients what to choose, but to support meaningful conversations and shared decision-making.
WHO IT IS FOR:
Patients, their families, and healthcare professionals.
2. CONVERSATION TOOLS
Talking about cancer can be difficult. This tool helps open up conversations by using both text and visuals, allowing patients to express what matters most to them, such as their values, preferences, and the language they feel comfortable with.
The tool builds on the “Metaphor Menu” approach (https://wp.lancs.ac.uk/melc/the-metaphor-menu/(öffnet in neuem Fenster)) which uses metaphors to help people talk about complex and emotional experiences. It is developed using artificial intelligence and is based on insights from real patient stories shared in blogs and online forums.
When someone is diagnosed with cancer, they are often faced with difficult choices. Chances of survival may differ by treatment option. And treatment options may also bring side effects that affect daily life, wellbeing, and independence. Making sense of treatment options can be overwhelming for patients, their families and their care teams. Moreover, the complexity of patients’ care paths makes it difficult for all involved to oversee all the steps, the healthcare providers who are involved, and the decisions that need to be made.
DECISION-SUPPORT TOOLS may help. These tools are designed to give patients clear and personalized information. Their aim is to support patients in better understanding the treatment options and in taking an active role in deciding about their treatment. Used well, such tools can support personalized care, improve health outcomes and can make healthcare more fair and inclusive. However, many tools fail short. They often focus only on survival and pay little attention to, for instance, quality of life. Decision-support tools are not yet widely used in everyday clinical care.
WHAT IS 4D PICTURE?
The core of the 4D PICTURE project is a new way of looking at cancer care: not just as a medical process, but as a lived experience. The 4D PICTURE PROJECT aims to do this by improving the use of decision-support tools. Its main goal is to redesign cancer care pathways and to integrate advanced, evidence-based decision-support tools directly into clinical practice.
By combining datasets of vast numbers of patient stories of their experiences, large clinical data sets, and innovative design methods, 4D PICTURE seeks to support patients and healthcare professionals in making better-informed decisions together.
To do this, the project further develops a promising service-design approach called MetroMapping (https://metromapping.org/en/(öffnet in neuem Fenster))
RETHINKING CANCER CARE WITH METROMAPPING
MetroMapping is a visual and human-centered method for understanding and improving care pathways. Inspired by metro maps, it shows the entire cancer journey in a clear and intuitive way.
MetroMapping captures:
• Patients’ and professionals experiences of care
• The full treatment journey, from diagnosis onward
• The information needed at each decision point
• The persons involved in decisions and care (patients, family members, healthcare professionals)
• The context, i.e. physical surroundings such as waiting rooms, objects (brochures, medical devices) that may impact decision making.
By making invisible problems visible (such as missing information or poorly timed decisions), MetroMapping helps teams redesign care pathways so they better support patients’ needs. The visual style of MetroMapping makes it easy to use, even for people with different levels of health literacy, and encourages collaboration across medical disciplines. (see Figure 1)
NEW TOOLS TO SUPPORT BETTER DECISIONS
In addition to MetroMapping, the 4D PICTURE consortium develops two types of decision-support tools:
1. PROGNOSTIC TOOLS
These tools help patients and healthcare professionals explore how different cancer treatments may affect both survival and quality of life. Using reliable clinical data and transparent prediction models, the tools present information in a clear, user-friendly way. The aim is not to tell patients what to choose, but to support meaningful conversations and shared decision-making.
WHO IT IS FOR:
Patients, their families, and healthcare professionals.
2. CONVERSATION TOOLS
Talking about cancer can be difficult. This tool helps open up conversations by using both text and visuals, allowing patients to express what matters most to them, such as their values, preferences, and the language they feel comfortable with.
The tool builds on the “Metaphor Menu” approach (https://wp.lancs.ac.uk/melc/the-metaphor-menu/(öffnet in neuem Fenster)) which uses metaphors to help people talk about complex and emotional experiences. It is developed using artificial intelligence and is based on insights from real patient stories shared in blogs and online forums.
- We obtained input from the boards of patient representatives in each country
- We disseminated questionnaires among cancer patients and clinicians in each country. The aim was to gain insight into experiences and attitudes regarding treatment decision making, best ways of sharing information, the possible value of decision-support tools, and positive and negative experiences with patients’ care paths.
- We have obtained additional analyzable datasets. We have performed systematic reviews to identify models that are potentially useful and have performed external validation studies, as well as developed algorithms for the new datasets for breast cancer, prostate cancer, and melanoma.
- We have developed algorithms towards the automatic and interpretable identification of metaphors, emotions and disease stages, in the UK, Denmark and Spain. And are in the process of developing these for the Netherlands. Additionally, we have used large language models for the classification of emotions and disease stages. Human evaluators were used to assess the effectiveness of our methods.
- Service exploration in Denmark and Spain has been finalized, and in Denmark the co-creation has resulted in various solutions to improve patient-centredness of the care pathways. In Spain co-creation will be carried out in Q4 2025. In the Netherlands, service exploration is on-going.
- We continued the pre-test/post-test study to evaluate the effects of MetroMapping implementation (clinical outcomes and costs) in each of the selected care paths for different cancer entities in the three countries (Denmark, the Netherlands and Spain). We developed a study protocol for the cost-effectiveness evaluation along the pre-test-post-test study in form of a manuscript draft. We developed a survey to assess the cost of MetroMapping itself.
- We developed a protocol for deliberative sessions in which we will discuss prototypes of the prognostic models and the metaphor menu with patients, informal caregivers, healthcare professionals and the general public, to understand their perceptions, in particular regarding perceived usefulness, perceived advantages and disadvantages of the tools, suggestions for improvement of tools, and suggestions for improvement of uptake and implementation of tools.
- We continued using the NASSS framework for the assessment of complexities of MetroMapping and the decision-support tools through workshops with consortium members. We developed a design method, Bodystorming, to evaluate the use of decision support tools in the clinical encounter.
- We published a literature review on the ethics in the different 4D PICTURE work packages. Embedded Ethics activities have continued, including presentations at consortium meetings, lectures, a book club, and a Signal discussion group, we finalized the first interview study on ethical issues of model developers.
- We disseminated questionnaires among cancer patients and clinicians in each country. The aim was to gain insight into experiences and attitudes regarding treatment decision making, best ways of sharing information, the possible value of decision-support tools, and positive and negative experiences with patients’ care paths.
- We have obtained additional analyzable datasets. We have performed systematic reviews to identify models that are potentially useful and have performed external validation studies, as well as developed algorithms for the new datasets for breast cancer, prostate cancer, and melanoma.
- We have developed algorithms towards the automatic and interpretable identification of metaphors, emotions and disease stages, in the UK, Denmark and Spain. And are in the process of developing these for the Netherlands. Additionally, we have used large language models for the classification of emotions and disease stages. Human evaluators were used to assess the effectiveness of our methods.
- Service exploration in Denmark and Spain has been finalized, and in Denmark the co-creation has resulted in various solutions to improve patient-centredness of the care pathways. In Spain co-creation will be carried out in Q4 2025. In the Netherlands, service exploration is on-going.
- We continued the pre-test/post-test study to evaluate the effects of MetroMapping implementation (clinical outcomes and costs) in each of the selected care paths for different cancer entities in the three countries (Denmark, the Netherlands and Spain). We developed a study protocol for the cost-effectiveness evaluation along the pre-test-post-test study in form of a manuscript draft. We developed a survey to assess the cost of MetroMapping itself.
- We developed a protocol for deliberative sessions in which we will discuss prototypes of the prognostic models and the metaphor menu with patients, informal caregivers, healthcare professionals and the general public, to understand their perceptions, in particular regarding perceived usefulness, perceived advantages and disadvantages of the tools, suggestions for improvement of tools, and suggestions for improvement of uptake and implementation of tools.
- We continued using the NASSS framework for the assessment of complexities of MetroMapping and the decision-support tools through workshops with consortium members. We developed a design method, Bodystorming, to evaluate the use of decision support tools in the clinical encounter.
- We published a literature review on the ethics in the different 4D PICTURE work packages. Embedded Ethics activities have continued, including presentations at consortium meetings, lectures, a book club, and a Signal discussion group, we finalized the first interview study on ethical issues of model developers.
Currently, we do not have any results beyond the state of the art to present. Make sure to follow our project to stay up to date about our work: https://4dpicture.eu/(öffnet in neuem Fenster)