PhD defense of Luiza PRADO on September 27, 2022 at 2:00 pm, Rockefeller campus

Title: Healthcare trajectories in chronic illness: using routine care data to support shared decision-making and care coordination

Supervisors: Dr DIMA Alexandra and Pr SCHOTT Anne-Marie

Abstract: Important strategies that have been studied and tested to improve chronic care are care coordination, interprofessional collaboration and shared decision-making. These can be enhanced by digital tools, to improve communication and provide accurate and timely health-related information to both patients and healthcare professionals. One possibility to provide simple and easy access to medical and health-related information is to generate care trajectories visualizations using healthcare events extracted from electronic healthcare databases. This thesis aimed to investigate the current offer and use of eHealth tools using routine collected data to support care coordination and shared decision-making in chronic care, diabetes care in particular. We have elaborated, with an interdisciplinary approach and considering 3 complementary domains (clinical, technological, and behavioural) a protocol for a systematic review of visualization of data-driven chronic care delivery pathways methods, the systematic review, and a qualitative study investigating how diabetes care trajectories are being constructed in real life, and how eHealth technologies are used to assist care coordination and the shared decision-making process. The protocol followed the Preferred Reporting Items for Systematic review and Meta-Analysis Protocols (PRISMA-P). It described a literature search for peer-reviewed publications in English in PubMed (MEDLINE), Scopus, IEEE, CINAHL and EMBASE, without date restrictions, the data extraction, and the selected records deductive-inductive content analysis. Data on clinical information and aims, technological development and characteristics, and user behaviors presented were summarized in tables and presented narratively. Of 2920 records identified, 14 studies were included, one evaluation and 13 descriptive reports. Clinical aims included treatment decision making, care coordination, and data interpretation. Technological development reports included scope definition to tool validation, with various levels of detail. User behaviors described referred to accessing tools, planning care, adjusting treatment, or supporting adherence. Electronic healthcare databases use for quantifying and visualizing chronic care delivery pathways is an emerging field. Detailed and standardized reporting of clinical and technological aspects is needed. Limited consideration was given to how chronic care delivery pathways would be used, validated, and implemented in clinical practice. The qualitative study VOIES-D-ql was composed of semi-directed interviews with a purposive sample of 15 healthcare professionals in diabetes care, 12 people with type 1 diabetes and 6 with type 2. Interviews were transcribed verbatim and analyzed using the framework method, following the structure of the interview guides (3 domains). The study has shown communication and data exchange was reported as still highly dependent on patients. Most exchanged information were blood test results and summary letters. Both groups described ambivalence towards the use of technological tools. Professionals described an increase in cognitive burden and time-consuming tasks. People with diabetes described a lack of usability and adaptability of mHealth apps and patient-dedicated hospital systems. Data sharing was viewed as necessary, if patients are informed, give consent, and confidentiality and data security are ensured. Healthcare professionals valued interprofessional collaboration but described a lack of time to exchange with other providers and set common goals for patients. Several improvements are needed to adapt the eHealth offer to the current needs of users. Development should focus particularly on system integration and automatic data feeding, and on features to facilitate data exchange and communication. This work is ended by a set of recommendations to the development and implementation of eHealth tools.


- BARAT Pascal, Professeur des Universités – Praticien Hospitalier, Université de Bordeaux

- GUILLEMIN Francis, Professeur des Universités, Université de Nancy

- TROMBERT-PAVIOT Beatrice, Professeure des Universités – Praticien Hospitalier, Université Jean Monet Saint-Étienne

- COLIN Cyrile, Professeur des Universités – Praticien Hospitalier, Université Lyon 1

- DIMA Alexandra, Chercheure, Fondation Sant Joan de Déu

- SCHOTT-PETHELAZ Anne-Marie, Professeure des Universités – Praticien Hospitalier, Université Lyon 1