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
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-supp...
| Main Authors: | , , , , , , , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
SAGE Publishing
2024-02-01
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| Series: | Palliative Care and Social Practice |
| Online Access: | https://doi.org/10.1177/26323524231225249 |
| _version_ | 1797316098117337088 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Judith A. C. Rietjens |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-08T03:13:21Z |
| format | Article |
| id | doaj.art-fa78d49b38d747248b231c97dd1f3474 |
| institution | Directory Open Access Journal |
| issn | 2632-3524 |
| language | English |
| last_indexed | 2024-03-08T03:13:21Z |
| publishDate | 2024-02-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Palliative Care and Social Practice |
| spelling | doaj.art-fa78d49b38d747248b231c97dd1f34742024-02-13T03:03:20ZengSAGE PublishingPalliative Care and Social Practice2632-35242024-02-011810.1177/26323524231225249Improving shared decision-making about cancer treatment through design-based data-driven decision-support tools and redesigning care paths: an overview of the 4D PICTURE projectJudith A. C. RietjensIngeborg GriffioenJorge Sierra-PérezGaby SroczynskiUwe SiebertAlena BuyxBarbara PericInge Marie SvaneJasper B. P. BrandsKarina D. SteffensenCarlos Romero PiquerasElham HedayatiMaria M. KarstenNorbert CouespelCanan AkogluRoberto Pazo-CidPaul RaysonHester F. LingsmaMaartje H. N. SchermerEwout W. SteyerbergSheila A. PayneIda J. KorfageAnne M. StiggelboutBackground: 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.https://doi.org/10.1177/26323524231225249 |
| spellingShingle | 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 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 |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 |
| url | https://doi.org/10.1177/26323524231225249 |
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