Improving shared decision-making about cancer treatment through design-based data-driven decision-support tools and redesigning care paths: an overview of the 4D PICTURE project

Judith A C Rietjens; Ingeborg Griffioen; Jorge Sierra-Pérez; Gaby Sroczynski; Uwe Siebert; Alena Buyx; Barbara Peric; Inge Marie Svane; Jasper B P Brands; Karina D Steffensen; Carlos Romero Piqueras; Elham Hedayati; Maria M Karsten; Norbert Couespel; Canan Akoglu; Roberto Pazo-Cid; Paul Rayson; Hester F Lingsma; Maartje H N Schermer; Ewout W Steyerberg; Sheila A Payne; Ida J Korfage; Anne M Stiggelbout

doi:10.1177/26323524231225249

Improving shared decision-making about cancer treatment through design-based data-driven decision-support tools and redesigning care paths: an overview of the 4D PICTURE project

Palliat Care Soc Pract. 2024 Feb 12:18:26323524231225249. doi: 10.1177/26323524231225249. eCollection 2024.

Authors

Judith A C Rietjens^{1

2}, Ingeborg Griffioen^{2

3}, Jorge Sierra-Pérez⁴, Gaby Sroczynski⁵, Uwe Siebert⁵, Alena Buyx⁶, Barbara Peric⁷, Inge Marie Svane⁸, Jasper B P Brands⁹, Karina D Steffensen^{10

11}, Carlos Romero Piqueras¹², Elham Hedayati^{13

14}, Maria M Karsten¹⁵, Norbert Couespel¹⁶, Canan Akoglu¹⁷, Roberto Pazo-Cid¹⁸, Paul Rayson¹⁹, Hester F Lingsma²⁰, Maartje H N Schermer²¹, Ewout W Steyerberg^{20

3}, Sheila A Payne²², Ida J Korfage²⁰, Anne M Stiggelbout²³

Affiliations

¹ Department of Public Health, Erasmus MC, University Medical Center Rotterdam, PO Box 2040, Rotterdam 3000 CA, The Netherlands.
² Department of Design, Organisation and Strategy, Faculty of Industrial Design Engineering, Delft University of Technology, Delft, The Netherlands.
³ Medical Decision Making, Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands.
⁴ Department of Engineering Design and Manufacturing, University of Zaragoza, Zaragoza, Spain.
⁵ Institute of Public Health, Medical Decision Making and Health Technology Assessment, Department of Public Health, Health Services Research and Health Technology Assessment, UMIT TIROL - University for Health Sciences and Technology, Hall in Tirol, Austria.
⁶ Institute for History and Ethics of Medicine, Technical University of Munich, Munich, Germany.
⁷ Institute of Oncology Ljubljana, Medical Faculty Ljubljana, University of Ljubljana, Ljubljana, Slovenia.
⁸ Department of Oncology, National Center for Cancer Immune Therapy, Herlev, Denmark.
⁹ Panton, Deventer, The Netherlands.
¹⁰ Center for Shared Decision Making, Vejle/Lillebaelt University Hospital of Southern Denmark, Vejle, Denmark.
¹¹ Institute of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark.
¹² Department of Design and Manufacturing Engineering, University of Zaragoza, Zaragoza, Spain Fractal Strategy, Zaragoza, Spain.
¹³ Department of Oncology-Pathology, Karolinska Institute, Stockholm, Sweden.
¹⁴ Breast Cancer Centre, Cancer Theme, Karolinska University Hospital, Karolinska CCC, Stockholm, Sweden.
¹⁵ Department of Gynecology with Breast Center, Charité Universitätsmedizin Berlin, Berlin, Germany.
¹⁶ European Cancer Organisation, Brussels, Belgium.
¹⁷ Lab for Social Design, Design School Kolding, Kolding, Denmark.
¹⁸ Department of Medical Oncology, Instituto de Investigación Sanitaria de Aragón, Hospital Universitario Miguel Servet, Zaragoza, Spain.
¹⁹ School of Computing and Communications, University Centre for Computer Corpus Research on Language, Lancaster University, Lancaster, UK.
²⁰ Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.
²¹ Department of Medical Ethics and Philosophy of Medicine, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.
²² International Observatory on End of Life Care, Lancaster University, Lancaster, UK.
²³ Medical Decision Making, Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands Erasmus School of Health Policy and Management, Erasmus University, Rotterdam, The Netherlands.

Abstract

Background: Patients with cancer often have to make complex decisions about treatment, with the options varying in risk profiles and effects on survival and quality of life. Moreover, inefficient care paths make it hard for patients to participate in shared decision-making. Data-driven decision-support tools have the potential to empower patients, support personalized care, improve health outcomes and promote health equity. However, decision-support tools currently seldom consider quality of life or individual preferences, and their use in clinical practice remains limited, partly because they are not well integrated in patients' care paths.

Aim and objectives: The central aim of the 4D PICTURE project is to redesign patients' care paths and develop and integrate evidence-based decision-support tools to improve decision-making processes in cancer care delivery. This article presents an overview of this international, interdisciplinary project.

Design methods and analysis: In co-creation with patients and other stakeholders, we will develop data-driven decision-support tools for patients with breast cancer, prostate cancer and melanoma. We will support treatment decisions by using large, high-quality datasets with state-of-the-art prognostic algorithms. We will further develop a conversation tool, the Metaphor Menu, using text mining combined with citizen science techniques and linguistics, incorporating large datasets of patient experiences, values and preferences. We will further develop a promising methodology, MetroMapping, to redesign care paths. We will evaluate MetroMapping and these integrated decision-support tools, and ensure their sustainability using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework. We will explore the generalizability of MetroMapping and the decision-support tools for other types of cancer and across other EU member states.

Ethics: Through an embedded ethics approach, we will address social and ethical issues.

Discussion: Improved care paths integrating comprehensive decision-support tools have the potential to empower patients, their significant others and healthcare providers in decision-making and improve outcomes. This project will strengthen health care at the system level by improving its resilience and efficiency.

Keywords: artificial intelligence; care paths; communication; cost-effectiveness; design; ethics; prognostic modelling; public health; shared decision-making.

Plain language summary

Improving the cancer patient journey and respecting personal preferences: an overview of the 4D PICTURE project The 4D PICTURE project aims to help cancer patients, their families and healthcare providers better undertstand their options. It supports their treatment and care choices, at each stage of disease, by drawing on large amounts of evidence from different types of European data. The project involves experts from many different specialist areas who are based in nine European countries. The overall aim is to improve the cancer patient journey and ensure personal preferences are respected.