open access publication

Article, 2024

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 & SOCIAL PRACTICE, ISSN 2632-3524, 2632-3524, Volume 18, 10.1177/26323524231225249

Contributors

Rietjens, Judith (Corresponding author) [1] [2] [3] Griffioen, Ingeborg [3] [4] [5] [6] Sierra-Perez, Jorge 0000-0002-7660-3508 [7] Sroczynski, Gaby 0000-0001-5193-0492 [8] Siebert, Uwe 0000-0001-6425-7671 [8] Buyx, Alena [9] Peric, Barbara [10] [11] Svane, Inge Marie [12] Brands, Jasper B. P. [13] Steffensen, Karina D. D. 0000-0002-9217-3907 [14] [15] Piqueras, Carlos Romero [7] [16] Hedayati, Elham 0000-0003-1352-4332 [17] [18] Karsten, Maria M. [19] [20] [21] Couespel, Norbert [22] Akoglu, Canan 0000-0002-7744-8079 [23] Pazo-Cid, Roberto 0000-0002-8026-7391 [24] Rayson, Paul [25] Lingsma, H.F [1] [2] Schermer, Maartje H. N. [1] [2] Steyerberg, E. W. 0000-0002-7787-0122 [1] [2] [4] [5] [6] Payne, Sheila A. [25] Korfage, Ida J. 0000-0001-6538-9115 [1] [2] Stiggelbout, Anne M. [2] [4] [5] [6] [26] 4D PICTURE Consortium

Affiliations

  1. [1] Univ Med Ctr Rotterdam, Dept Publ Hlth, Erasmus MC, POB 2040, NL-3000 CA Rotterdam, Netherlands
  2. [NORA names: Netherlands; Europe, EU; OECD];
  3. [2] Erasmus Univ, Erasmus Sch Hlth Policy & Management, Rotterdam, Netherlands
  4. [NORA names: Netherlands; Europe, EU; OECD];
  5. [3] Delft Univ Technol, Fac Ind Design Engn, Dept Design Org & Strategy, Delft, Netherlands
  6. [NORA names: Netherlands; Europe, EU; OECD];
  7. [4] Leiden Univ Med Ctr, Dept Biomed Data Sci & Med Decis Making, Leiden, Netherlands
  8. [NORA names: Netherlands; Europe, EU; OECD];
  9. [5] Leiden Univ Med Ctr, Dept Biomed Data Sci & Med Decis Making, Leiden, Netherlands
  10. [NORA names: Netherlands; Europe, EU; OECD];

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

Data Provider: Clarivate