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
Palliative Care and Social Practice, vol. 18, pp. 26323524231225249
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.
Authors 66
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Judith A C Rietjens corresponding
Erasmus MC · Delft University of Technology
Affiliation as printed
Department of Design, Organisation and Strategy, Faculty of Industrial Design Engineering, Delft University of Technology, Delft, The Netherlands
Department of Public Health, Erasmus MC, University Medical Center Rotterdam, PO Box 2040, Rotterdam 3000 CA, The Netherlands
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Leiden University Medical Center · Delft University of Technology
Affiliation as printed
Department of Design, Organisation and Strategy, Faculty of Industrial Design Engineering, Delft University of Technology, Delft, The Netherlands
Medical Decision Making, Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands
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Affiliation as printed
Department of Engineering Design and Manufacturing, University of Zaragoza, Zaragoza, Spain
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UMIT TIROL - Private University for Health Sciences and Health Technology
Affiliation as printed
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
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
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UMIT TIROL - Private University for Health Sciences and Health Technology
Affiliation as printed
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
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
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Technical University of Munich
Affiliation as printed
Institute for History and Ethics of Medicine, Technical University of Munich, Munich, Germany
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University of Ljubljana · Institute of Oncology Ljubljana
Affiliation as printed
Institute of Oncology Ljubljana, Medical Faculty Ljubljana, University of Ljubljana, Ljubljana, Slovenia
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Affiliation as printed
Department of Oncology, National Center for Cancer Immune Therapy, Herlev, Denmark
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Affiliation as printed
Panton, Deventer, The Netherlands
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University of Southern Denmark · Vejle Sygehus
Affiliation as printed
Center for Shared Decision Making, Vejle/Lillebaelt University Hospital of Southern Denmark, Vejle, Denmark
Institute of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark
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Affiliation as printed
Department of Design and Manufacturing Engineering, University of Zaragoza, Zaragoza, Spain Fractal Strategy, Zaragoza, Spain
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Karolinska University Hospital · Karolinska Institutet
Affiliation as printed
Breast Cancer Centre, Cancer Theme, Karolinska University Hospital, Karolinska CCC, Stockholm, Sweden
Department of Oncology-Pathology, Karolinska Institute, Stockholm, Sweden
Department of Oncology–Pathology, Karolinska Institute, Stockholm, Sweden
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Charité - Universitätsmedizin Berlin
Affiliation as printed
Department of Gynecology with Breast Center, Charité Universitätsmedizin Berlin, Berlin, Germany
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Affiliation as printed
European Cancer Organisation, Brussels, Belgium
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Affiliation as printed
Lab for Social Design, Design School Kolding, Kolding, Denmark
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Hospital Universitario Miguel Servet · Instituto de Investigación Sanitaria Aragón
Affiliation as printed
Department of Medical Oncology, Instituto de Investigación Sanitaria de Aragón, Hospital Universitario Miguel Servet, Zaragoza, Spain
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Affiliation as printed
School of Computing and Communications, University Centre for Computer Corpus Research on Language, Lancaster University, Lancaster, UK
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Affiliation as printed
Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
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Erasmus MC · Erasmus University Rotterdam
Affiliation as printed
Department of Medical Ethics and Philosophy of Medicine, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
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Leiden University Medical Center · Erasmus MC
Affiliation as printed
Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
Medical Decision Making, Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands
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Affiliation as printed
International Observatory on End of Life Care, Lancaster University, Lancaster, UK
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Affiliation as printed
Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
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Anne Margarethe Stiggelbout Aachen Medical Decision Making Department of Biomedical Data Sciences Netherlands Erasmus School of Health Policy and Management
Leiden University Medical Center · Erasmus University Rotterdam
Affiliation as printed
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
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Affiliation as printed
Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
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Affiliation as printed
Department of Linguistics and English Language, Lancaster University, Lancaster, United Kingdom
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Erasmus MC · Erasmus MC Cancer Institute
Affiliation as printed
Department of Urology, Cancer Institute, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
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Affiliation as printed
Department of Engineering Design and Manufacturing, University of Zaragoza, Zaragoza, Spain
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Leiden University Medical Center
Affiliation as printed
Medical Decision Making, Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands
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Affiliation as printed
Leiden Institute of Advanced Computer Science, Leiden University, Leiden, The Netherlands
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Anne Kuld Aachen Medical Decision Making Department of Biomedical Data Sciences Netherlands Erasmus School of Health Policy and Management
Leiden University Medical Center · Erasmus University Rotterdam
Affiliation as printed
Department of Oncology, National Center for Cancer Immune Therapy, Herlev, Denmark
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
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Affiliation as printed
Department of Medical Informatics, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
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Affiliation as printed
Center for Shared Decision Making, Vejle/Lillebaelt University Hospital of Southern Denmark, Vejle, Denmark
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Affiliation as printed
Department of Medical Informatics, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
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Erasmus MC · Erasmus MC Cancer Institute
Affiliation as printed
Department of Urology, Cancer Institute, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
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Affiliation as printed
Department of Oncology, National Center for Cancer Immune Therapy, Herlev, Denmark
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Erasmus MC · Erasmus MC Cancer Institute
Affiliation as printed
Department of Surgery, Cancer Institute, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
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Liverpool University Hospitals NHS Foundation Trust · Marie Curie · Lancaster University
Affiliation as printed
Department of Palliative Care, Lancaster Medical School, Lancaster, UK
Marie Curie Hospice Liverpool, Liverpool University Hospitals NHS Foundation Trust, Liverpool, UK
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Erasmus MC · Dutch Institute for Clinical Auditing
Affiliation as printed
Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
NABON Breast Cancer Audit (NBCA), Dutch institute of Clinical Auditing (DICA)
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Affiliation as printed
Department of Engineering Design and Manufacturing, University of Zaragoza, Zaragoza, Spain
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Affiliation as printed
Lab for Social Design, Design School Kolding, Kolding, Denmark
Department of Oncology, National Center for Cancer Immune Therapy, Herlev, Denmark
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Affiliation as printed
Department of Computer Science and Systems Engineering, University of Zaragoza, Zaragoza, Spain
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Universidad de Zaragoza · Hospital Universitario Miguel Servet · Instituto de Investigación Sanitaria Aragón
Affiliation as printed
Department of Medical Oncology, Miguel Servet University Hospital, Facultad de Medicina. Universidad de Zaragoza, Instituto Investigación Sanitaria Aragón, Zaragoza, Spain
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Affiliation as printed
Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
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Erasmus MC · Erasmus MC Cancer Institute
Affiliation as printed
Department of Urology, Cancer Institute, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
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Affiliation as printed
Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
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Affiliation as printed
Department of Engineering Design and Manufacturing, University of Zaragoza, Zaragoza, Spain
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Affiliation as printed
Department of Computer Science and Systems Engineering, University of Zaragoza, Zaragoza, Spain
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UMIT TIROL - Private University for Health Sciences and Health Technology
Affiliation as printed
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
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Dutch Institute for Clinical Auditing
Affiliation as printed
Dutch Institute for Clinical Auditing, Leiden, The Netherlands
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Leiden University Medical Center
Affiliation as printed
Department of Surgery, Leiden University Medical Center, Leiden, The Netherlands
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Leiden University Medical Center
Affiliation as printed
Department of Medical Oncology, Leiden University Medical Center, Leiden, The Netherlands
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Leiden University Medical Center
Affiliation as printed
Department of Information Technology & Digital Innovation, Leiden University Medical Center (LUMC), Leiden, The Netherlands
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Leiden University Medical Center
Affiliation as printed
Medical Decision Making, Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands
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University of Ljubljana · Institute of Oncology Ljubljana
Affiliation as printed
Institute of Oncology Ljubljana, Medical faculty Ljubljana, University of Ljubljana, Ljubljana, Slovenia
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Maastricht University Medical Centre · Maastricht University
Affiliation as printed
Department of Radiation Oncology (MAASTRO), GROW School of Oncology and Developmental Biology (GROW), Maastricht University Medical Center, Maastricht, The Netherlands
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Charité - Universitätsmedizin Berlin
Affiliation as printed
Department of Gynecology with Breast Center, Charité Universitätsmedizin Berlin, Berlin, Germany
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Affiliation as printed
European Cancer Organisation, Brussels, Belgium
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Affiliation as printed
European Cancer Organisation, Brussels, Belgium
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Karolinska University Hospital
Affiliation as printed
Breast Cancer Centre, Cancer Theme, Karolinska University Hospital; Karolinska CCC, Stockholm, Sweden
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Affiliation as printed
Lab for Social Design, Design School Kolding, Kolding, Denmark
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Universidad de Zaragoza · Hospital Universitario Miguel Servet · Instituto de Investigación Sanitaria Aragón
Affiliation as printed
Department of Medical Oncology, Miguel Servet University Hospital, Facultad de Medicina. Universidad de Zaragoza, Instituto Investigación Sanitaria Aragón, Zaragoza, Spain
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Universidad de Zaragoza · Hospital Universitario Miguel Servet · Instituto de Investigación Sanitaria Aragón
Affiliation as printed
Department of Medical Oncology, Miguel Servet University Hospital, Facultad de Medicina. Universidad de Zaragoza, Instituto Investigación Sanitaria Aragón, Zaragoza, Spain
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Universidad de Zaragoza · Hospital Universitario Miguel Servet · Instituto de Investigación Sanitaria Aragón
Affiliation as printed
Department of Medical Oncology, Miguel Servet University Hospital, Facultad de Medicina. Universidad de Zaragoza, Instituto Investigación Sanitaria Aragón, Zaragoza, Spain
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Delft University of Technology
Affiliation as printed
Department of Design, Organisation and Strategy, Faculty of Industrial Design Engineering, Delft University of Technology, Delft, The Netherlands
Department of Design, Organisation and Strategy,
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Delft University of Technology
Affiliation as printed
Department of Design, Organisation and Strategy, Faculty of Industrial Design Engineering, Delft University of Technology, Delft, The Netherlands
Department of Design, Organisation and Strategy,
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Delft University of Technology
Affiliation as printed
Department of Design, Organisation and Strategy, Faculty of Industrial Design Engineering, Delft University of Technology, Delft, The Netherlands
Department of Design, Organisation and Strategy,
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