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
Authors: Rietjens Judith A. C. , Griffioen Ingeborg , Sierra-Pérez Jorge , Sroczynski Gaby , Siebert Uwe , Buyx Alena , Peric Barbara , Svane Inge Marie , Brands Jasper B. P. , Steffensen Karina D. , Romero Piqueras Carlos , Hedayati Elham , Karsten Maria M. , Couespel Norbert , Akoglu Canan , Pazo-Cid Roberto , Rayson Paul , Lingsma Hester F. , Schermer Maartje H. N. , Steyerberg Ewout W. , Payne Sheila A. , Korfage Ida J. , Stiggelbout Anne M. , Oliveira Claudia Cruz , Semino Elena , Roobol Monique , López-Forniés Ignacio , Kunneman Marleen , Verberne Suzan , Kuld Anne , van Mulligen Erik M. , Knudsen Bettina Mølri , Kors Jan A. , Venderbos Lionne D. F. , Donia Marco , Koppert Linetta B. , Nwosu Amara C. , Verheul Elfi M. , Sañudo Yeray , Kremer Marie , Gracia Jorge , Antón Antonio , Schreijer Maud , Bangma Chris , Hartman Laura , van Klaveren David , Valles Monserrat Aiger , Pitarch Lucia , Hallsson Lara R. , Wouters Michel , Kapiteijn Ellen , de Glas Nienke , van Buchem Marieke , Doornkamp Frank , Borštnar Simona , Wee Leonard , Pross Therese , Silva Marta , Venegoni Enea , Lorenzo Nora , Wallberg Susanne , Dankl Kathrina , de Jesús Teresa Puértolas , Romera Juan Lao , Pons Paula Gomila , Signerez Paula Melo , Secomandi Fernando , Snelders Dirk 
Published: February 2024

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.