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 and Social Practice, ISSN 2632-3524, Volume 18, Page 26323524231225249, 10.1177/26323524231225249

Contributors

Rietjens, Judith A C (Corresponding author) Griffioen, Ingeborg Sierra-Pérez, Jorge 0000-0002-7660-3508 Sroczynski, Gaby 0000-0001-5193-0492 Siebert, Uwe P 0000-0001-6425-7671 Buyx, Alena M Peric, Barbara Svane, Inge Marie Stentoft 0000-0002-9451-6037 Brands, Jasper B. P. Steffensen, Karina Dahl 0000-0002-9217-3907 Romero-Piqueras, Carlos Hedayati, Elham Karsten, Maria M. Couespel, Norbert Akoglu, Canan 0000-0002-7744-8079 Pazo-Cid, Roberto Antonio 0000-0002-8026-7391 Rayson, Paul Lingsma, Hester F. Schermer, Maartje H N 0000-0003-4283-9659 Steyerberg, Ewout W. Payne, Sheila A. Korfage, Ida Joanna 0000-0001-6538-9115 Stiggelbout, Anne M. Oliveira, Claudia Cruz [1] Semino, Elena 0000-0002-3421-2963 [2] Roobol, Monique [1] López-Forniés, Ignacio 0000-0001-6352-2023 [3] Kunneman, Marleen [4] Verberne, Suzan 0000-0002-9609-9505 [5] Kuld, Anne [6] Van Mulligen, Erik M 0000-0003-1377-9386 [1] Knudsen, Bettina Mølri 0000-0002-6231-3374 [7] Kors, Jan A [1] Venderbos, Lionne D F 0000-0002-4269-0623 [1] Donia, Marco [6] Koppert, Linetta B 0000-0003-1944-6777 [1] Nwosu, Amara Callistus 0000-0003-0014-3741 [8] [9] Verheul, Elfi M [1] [10] Sañudo, Yeray [3] Kremer, Marie [11] Gracia, Jorge [3] Antón, Antonio [12] Schreijer, Maud [1] Bangma, Chris [1] Hartman, Laura [1] Van Klaveren, David 0000-0002-2096-606X [1] Valles, Monserrat Aiger [3] Pitarch, Lucia 0000-0002-6734-8808 [3] Hallsson, Lára Run 0000-0002-4879-7894 [13] Wouters, M W J M Michel 0000-0001-6173-0662 [14] Kapiteijn, Ellen H W 0000-0002-4814-6426 [4] De Glas, Nienke Aafke 0000-0001-8350-4252 [4] Van Buchem, Marieke Meija 0000-0002-2917-0842 [4] Doornkamp, Frank [4] Borštnar, Simona [15] Wee, Leonard [16] Pross, Therese 0000-0002-9942-4182 [17] Silva, Marta [18] Venegoni, Enea [18] Lorenzo, Nora [18] Wallberg, Susanne [19] Dankl, Kathrina [11] de Jesús, Teresa Puértolas [12] Romera, Juan Lao [12] Pons, Paula Gomila [12] Signerez, Paula Melo [20] Secomandi, Fernando 0000-0001-6800-3919 [20] Snelders, Dirk 0000-0002-6678-9281 [20]

Affiliations

  1. [1] Erasmus MC
    2. [NORA names: Netherlands; Europe, EU; OECD];
  2. [2] Lancaster University
    3. [NORA names: United Kingdom; Europe, Non-EU; OECD];
  3. [3] University of Zaragoza
    4. [NORA names: Spain; Europe, EU; OECD];
  4. [4] Leiden University Medical Center
    5. [NORA names: Netherlands; Europe, EU; OECD];
  5. [5] Leiden University
    6. [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

EU member states, NASSS, abandonment, algorithm, analysis, approach, breast, breast cancer, cancer, cancer care delivery, cancer treatment, care, care delivery, care path, citizen science techniques, citizens, clinical practice, co-creation, complex decisions, conversion, conversion tool, dataset, decision, decision-making, decision-making process, decision-support tool, delivery, design method, effect, efficiency, empower patients, equity, ethical approach, ethical issues, ethics, evidence-based decision-support tools, experiments, framework, generalizability, health, health care, health equity, health outcomes, healthcare, healthcare providers, high-quality datasets, improve decision-making processes, improve health outcomes, improve outcomes, individual preferences, interdisciplinary project, issues, levels, life, linguistics, melanoma, member states, menus, metaphor, method, methodology, mining, nonadopters, objective, options, others, outcomes, overview, path, patient care path, patient experience, patients, personal care, picture projection, potential, practice, preferences, process, profile, prognostic algorithms, project, promote health equity, prostate, prostate cancer, providers, quality, quality of life, resilience, risk, risk profile, scale-up, science techniques, significant others, spread, stakeholders, state, survival, sustainability, system, system level, technique, text, text mining, tools, treatment, treatment decisions, values

Funders

  • Innovate UK
  • European Commission

Data Provider: Digital Science

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