Status and Recommendations of Technological and Data-Driven Innovations in Cancer Care: Focus Group Study.

BACKGROUND: The status of the data-driven management of cancer care as well as the challenges, opportunities, and recommendations aimed at accelerating the rate of progress in this field are topics of great interest. Two international workshops, one conducted in June 2019 in Cordoba, Spain, and one in October 2019 in Athens, Greece, were organized by four Horizon 2020 (H2020) European Union (EU)-funded projects: BOUNCE, CATCH ITN, DESIREE, and MyPal. The issues covered included patient engagement, knowledge and data-driven decision support systems, patient journey, rehabilitation, personalized diagnosis, trust, assessment of guidelines, and interoperability of information and communication technology (ICT) platforms. A series of recommendations was provided as the complex landscape of data-driven technical innovation in cancer care was portrayed. OBJECTIVE: This study aims to provide information on the current state of the art of technology and data-driven innovations for the management of cancer care through the work of four EU H2020-funded projects. METHODS: Two international workshops on ICT in the management of cancer care were held, and several topics were identified through discussion among the participants. A focus group was formulated after the second workshop, in which the status of technological and data-driven cancer management as well as the challenges, opportunities, and recommendations in this area were collected and analyzed. RESULTS: Technical and data-driven innovations provide promising tools for the management of cancer care. However, several challenges must be successfully addressed, such as patient engagement, interoperability of ICT-based systems, knowledge management, and trust. This paper analyzes these challenges, which can be opportunities for further research and practical implementation and can provide practical recommendations for future work. CONCLUSIONS: Technology and data-driven innovations are becoming an integral part of cancer care management. In this process, specific challenges need to be addressed, such as increasing trust and engaging the whole stakeholder ecosystem, to fully benefit from these innovations.

A Domain-Independent Semantically Validated Authoring Tool for Formalizing Clinical Practice Guidelines.

Clinical Practice Guidelines (CPGs) are promoted as a powerful tool for standardization of the medical care quality and improvement of patients' outcomes. However, CPGs need to be formalized in a computer interpretable format (i.e. as Computer Interpretable Guidelines or CIGs) for their implementation within Clinical Decision Support Systems (CDSS). But, maintaining the reliability of these guidelines when deploying them in different clinical settings is still a challenge. On the one hand, the complexity of the medical language complicates the adoption of the guidelines in different clinical institutions. On the other hand, the continuous discovery of new evidence needs to be included within CPGs, updating their contents and providing tools for evidence assessment. Furthermore, although nowadays' clinical decision-making tends towards a personalized process, guidelines are designed for a general population. In this paper, we present an Authoring Tool (AT) that allows clinicians to take an active role in the process of CPG formalization. This AT enables them to introduce new clinical knowledge and create personalized CIGs for their local application, which best fits their clinical needs. The proposed system also allows the use of ontologies to facilitate the standardization and interoperability of the created guidelines. Finally, the content included in the CIGs can be evaluated using standard systems for grading clinical evidence.

Preliminary Qualitative and Quantitative Evaluation of DESIREE, a Decision Support Platform for the Management of Primary Breast Cancer Patients.

The DESIREE project has developed a platform offering several complementary therapeutic decision support systems (DSSs) to improve care quality for breast cancer patients. A first assessment of the system was carried out in close-to-real tumor boards (TBs). Fourteen TB sessions were organized corresponding to a total of 125 exploitable decisions previously made without the system and re-played with the system after a washout period in three pilot sites. Results show an overestimation of declared compliance with guidelines when not using the system as compared to measured compliance with the recommendations issued from the guideline-based DSS of DESIREE. After using the system, measured compliance rate of decisions with guidelines was significantly improved from 74.4% to 89.6%. Most of the changes in decisions when using the guideline-based DSS were associated with non-compliant decisions that became compliant. Qualitative analysis and interviews showed that despite maturity issues, clinicians found DESIREE DSSs innovative and promising.

A Research Roadmap: Connected Health as an Enabler of Cancer Patient Support.

The evidence that quality of life is a positive variable for the survival of cancer patients has prompted the interest of the health and pharmaceutical industry in considering that variable as a final clinical outcome. Sustained improvements in cancer care in recent years have resulted in increased numbers of people living with and beyond cancer, with increased attention being placed on improving quality of life for those individuals. Connected Health provides the foundations for the transformation of cancer care into a patient-centric model, focused on providing fully connected, personalized support and therapy for the unique needs of each patient. Connected Health creates an opportunity to overcome barriers to health care support among patients diagnosed with chronic conditions. This paper provides an overview of important areas for the foundations of the creation of a new Connected Health paradigm in cancer care. Here we discuss the capabilities of mobile and wearable technologies; we also discuss pervasive and persuasive strategies and device systems to provide multidisciplinary and inclusive approaches for cancer patients for mental well-being, physical activity promotion, and rehabilitation. Several examples already show that there is enthusiasm in strengthening the possibilities offered by Connected Health in persuasive and pervasive technology in cancer care. Developments harnessing the Internet of Things, personalization, patient-centered design, and artificial intelligence help to monitor and assess the health status of cancer patients. Furthermore, this paper analyses the data infrastructure ecosystem for Connected Health and its semantic interoperability with the Connected Health economy ecosystem and its associated barriers. Interoperability is essential when developing Connected Health solutions that integrate with health systems and electronic health records. Given the exponential business growth of the Connected Health economy, there is an urgent need to develop mHealth (mobile health) exponentially, making it both an attractive and challenging market. In conclusion, there is a need for user-centered and multidisciplinary standards of practice to the design, development, evaluation, and implementation of Connected Health interventions in cancer care to ensure their acceptability, practicality, feasibility, effectiveness, affordability, safety, and equity.

Gathering Real World Evidence Through the Evaluation of Decision History.

Clinical Practice Guidelines (CPGs) gather latest evidence-based results to guide and support clinicians over the decision-making process to provide best care. Nevertheless, clinical cases may be subject to some biases (understood as non-compliance with CPGs) that can lead to adapt care delivery. In this work an experience-based decision support leaning on the structuration of the Decisional Event concept for tracking and storing each clinical decision is presented. Moreover, a visual analytics tool is provided in order to facilitate the visualization of biases from guideline-based decision support and the identification and inclusion of real-world evidence into the reasoning process by augmenting the knowledge formalized in the implemented guidelines.

Architecture for a Multimodal and Domain-Independent Clinical Decision Support System Software Development Kit.

Digitalization of the decision-making process in healthcare has been promoted to improve clinical performance and patient outcomes. The implementation of Clinical Practice Guidelines (CPGs) using Clinical Decision Support Systems (CDSSs) is widely developed in order to achieve this purpose within clinical information systems. Nevertheless, due to several factors such as (i) incompleteness of CPG clinical knowledge, (ii) out-of-date contents, or (iii) knowledge gaps for specific clinical situations, guideline-based CDSSs may not completely satisfy clinical needs. The proposed architecture aims to cope with guideline knowledge gaps and pitfalls by harmonizing different modalities of decision support (i.e. guideline-based CDSSs, experience-based CDSSs, and data mining-based CDSSs) and information sources (i.e. CPGs and patient data) to provide the most complete, personalized, and up-to-date propositions to manage patients. We have developed a decisional event structure to retrieve all the information related to the decision-making process. This structure allows the tracking, computation, and evaluation of all the decisions made over time based on patient clinical outcomes. Finally, different user-friendly and easy-to-use authoring tools have been implemented within the proposed architecture to integrate the role of clinicians in the whole process of knowledge generation and validation. A use case based on Breast Cancer management is presented to illustrate the performance of the implemented architecture.

Implementing Guideline-Based, Experience-Based, and Case-Based Approaches to Enrich Decision Support for the Management of Breast Cancer Patients in the DESIREE Project.

DESIREE is a European-funded project to improve the management of primary breast cancer. We have developed three decision support systems (DSSs), a guideline-based, an experience-based, and a case-based DSSs, resp. GL-DSS, EXP-DSS, and CB-DSS, that operate simultaneously to offer an enriched multi-modal decision support to clinicians. A breast cancer knowledge model has been built to describe within a common ontology the data model and the termino-ontological knowledge used for representing breast cancer patient cases. It allows for rule-based and subsumption-based reasoning in the GL-DSS to provide best patient-centered reconciled care plans. It also allows for using semantic similarity in the retrieval algorithm implemented in the CB-DSS. Rainbow boxes are used to display patient cases similar to a given query patient. This innovative visualization technique translates the question of deciding the most appropriate treatment into a question of deciding the colour dominance among boxes.

Weighting Experience-Based Decision Support on the Basis of Clinical Outcomes' Assessment.

Technologies such as decision support systems are expected to help clinicians implement clinical practice guidelines (CPGs) with the aim of decreasing practice variations and improving clinical outcomes. However, if CPGs provide recommendations to improve patient care, they may fail to take into account actual clinical outcomes associated to the recommended treatment, such as adverse events or secondary effects. In this paper, we present a novel experience-based decision support approach applied to the management of breast cancer, the most commonly diagnosed cancer among women worldwide. Capitalizing on the clinical know-how of physicians and the modeling of patient's outcomes and toxicities in a computer interpretable way, we are able to discover new knowledge that helps improving patient-centered clinical care. This work is conducted within the EU Horizon 2020 project DESIREE.

Reconciliation of multiple guidelines for decision support: a case study on the multidisciplinary management of breast cancer within the DESIREE project.

Breast cancer is the most common cancer among women. DESIREE is a European project which aims at developing web-based services for the management of primary breast cancer by multidisciplinary breast units (BUs). We describe the guideline-based decision support system (GL-DSS) of the project. Various breast cancer clinical practice guidelines (CPGs) have been selected to be concurrently applied to provide state-of-the-art patient-specific recommendations. The aim is to reconcile CPG recommendations with the objective of complementarity to enlarge the number of clinical situations covered by the GL-DSS. Input and output data exchange with the GL-DSS is performed using FHIR. We used a knowledge model of the domain as an ontology on which relies the reasoning process performed by rules that encode the selected CPGs. Semantic web tools were used, notably the Euler/EYE inference engine, to implement the GL-DSS. "Rainbow boxes" are a synthetic tabular display used to visualize the inferred recommendations.