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.@en

Treatment decision-making can be complex, notably when there are multiple treatments available, with different (probabilities of) benefits and harms, for example, survival and side effects.1 It is precisely in these complex situations that the preferences of the patient are of utmost importance, as the trade-offs of benefits and harms are subjective and concern patients' lives.2 In such trade-offs, shared decision making (SDM) has gained momentum as a strategy to include both the best available evidence and the patient's preferences.3

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Beslissingen over medische behandelingen worden steeds vaker gezamenlijk genomen door de arts, de patiënt en diens naasten. In deze gedeelde besluitvorming (of Shared Decision Making - SDM) over diagnose en behandeling worden ook de waarden en voorkeuren van patiënten meegenomen (Stiggelbout et al., 2015). Onderzoek heeft aangetoond dat gedeelde besluitvorming voordelen oplevert voor patiënten en zorgprofessionals, zoals meer vertrouwen in de beslissing, grotere tevredenheid met het consult en betere therapietrouw van de patiënt (Shay & Lafata, 2014). Toch blijft een effectieve implementatie van gedeelde besluitvorming beperkt, ondanks de ontwikkeling van keuzehulpen en aandacht voor gedeelde besluitvorming in de medische opleidingen. Een goede implementatie van gedeelde besluitvorming in de complexe zorgpraktijk blijkt moeilijk.@en

Purpose: Solutions to improve the implementation of shared decision making (SDM) in oncology often focus on the consultation, with limited effects. In this study, we used a service design perspective on the care path of locally advanced pancreatic cancer (LAPC). We aimed to understand how experiences of patients, their significant others, and medical professionals over the entire care path accumulate to support their ability to participate in SDM. Participants and methods: We used qualitative interviews including design research techniques with 13 patients, 13 significant others, and 11 healthcare professionals, involved in the diagnosis or treatment of LAPC. The topic list was based on the literature and an auto-ethnography of the illness trajectory by a caregiver who is also a service design researcher. We conducted a thematic content analysis to identify themes influencing the ability to participate in SDM. Results: We found four interconnected themes: (1) Decision making is an ongoing and unpredictable process with many decision moments, often unannounced. The unpredictability of the disease course, tumor response to treatment, and consequences of choices on the quality of life complicate decision making; (2) Division of roles, tasks, and collaboration among professionals and between professionals and patients and/or their significant others is often unclear to patients and their significant others; (3) It involves “work” for patients and their significant others to obtain and understand information; (4) In “their disease journey,” patients are confronted with unexpected energy drains and energy boosts, that influence their level of empowerment to participate in SDM. Conclusion: The service design perspective uncovered how the stage for SDM is often set outside the consultation, which might explain the limited effect currently seen of interventions focusing on consultation itself. Our findings serve as a starting point for (re)designing care paths to improve the implementation of SDM in oncology.

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Background Patient safety is a fundamental value of healthcare to avoid patient harm. Non‐compliance with patient safety standards may result in patient harm and is therefore a global concern. A Self‐assessment Instrument for Perioperative Patient Safety (SIPPS) monitoring and benchmarking compliance to safety standards was validated in a multicentre pilot study. Methods A preliminary questionnaire, based on the Dutch perioperative patient safety guidelines and covering international patient safety goals, was evaluated in a first digital RAND Delphi round. The results were used to optimize the questionnaire and design the SIPPS. For measurement and benchmarking purposes, SIPPS was categorized into seven main patient safety domains concerning all care episode phases of the perioperative trajectory. After consensus was reached in a face‐to‐face Delphi round, SIPPS was pilot‐tested in five hospitals for five characteristics: measurability, applicability, improvement potential, discriminatory capacity and feasibility. Results The results of the first Delphi round showed moderate feasibility for the preliminary questionnaire (81·6 per cent). The pilot test showed good measurability for SIPPS: 99·8 per cent of requested information was assessable. Some 99·9 per cent of SIPPS questions were applicable to the selected respondents. With SIPPS, room for improvement in perioperative patient safety compliance was demonstrated for all hospitals, concerning all safety domains and all care episode phases of the perioperative trajectory (compliance 76·1 per cent). SIPPS showed mixed results for discriminatory capacity. SIPPS showed good feasibility for all items (range 91·9–95·7 per cent). Conclusion A self‐assessment instrument for measuring perioperative patient safety (SIPPS) compliance meeting international standards was validated. With SIPPS, improvement areas for perioperative patient safety and best practices across hospitals could be identified. @en

This paper addresses the potential contribution of service design for improving the implementation of shared decision-making in healthcare. The iterative approach of design research is compared with the more linear, (social) scientific approaches often seen in health services research. Five foundational principles of service design are explored regarding their potential contribution to the improvement of the implementation of shared decision-making. Thus, this position paper can be seen as a call on service designers and healthcare professionals to combine their efforts to improve the implementation of shared decision-making in healthcare.@en