Project 313891 / FRQS
Digital health and the care and service pathway for people living with a major neurocognitive disorder and their family caregivers: A participatory, multi-stakeholder approach to responsive and integrated telehealth
Dr Olivier Beauchet, University of Montreal
Problematic – People living with major neurocognitive disorders (MNCDs) often have inadequate access to first-line care and services in terms of time, type, number, waiting time and need. Rethinking access to these resources to improve their pathway has become a priority today. Telehealth is a solution to ensure continuity and personalization of access to care and services for people living with MNCDs. CARE© and ESOGER© are two complementary health applications for frail seniors and their caregivers. For CARE©, they allow to identify a state of frailty (i.e., level of deterioration of overall health) and for ESOGER© to respond to the needs for care and services (detected by CARE©) and to follow up on the interventions put in place.
Research question and objectives – The objectives are to: (1) Characterize the usage behaviors of CARE© and ESOGER© in the context of caring for people living with MNCDs, (2) Examine the type and evolution of pre-existing and new relationships (i.e., created by CARE©, ESOGER© and the arrival of a new community actor such as the Red Cross) between dyads (i.e., people living with MNCDs and family caregivers) and the ecosystem actors who care for them, but also between the actors themselves, (3) Characterize the usage effects of CARE© and ESOGER©, and (4) Determine the characteristics of a successful deployment.
The research questions are: (1) What are the interests, expectations, and needs of dyads and ecosystem actors? (2) What are the barriers and levers to the use of CARE© and ESOGER©, and their integration into the primary care pathway and services? (3) What are the effects of CARE© and ESOGER© on the evolution of MNCDs, loss of autonomy, exhaustion, social isolation, quality of life and agentivity of dyads, modes of interprofessional and inter-network collaboration and their evolution, the trajectories of users living with MNCDs within the care and service pathways, and financial costs? (4) What are the choices to be made to foster a learning health system and (5) successful deployment?
Methodology – We will use a participatory action-research type method where the progression of activities is based on constant back and forth between the dyads, the actors involved in their management of the MNCDs and the researchers. The functioning is based on an iterative process of multipartite observation of usage behaviors and effects of the actions undertaken, which allows learning from the results and increases the benefits for all users (users, care and service actors, researchers). We will distinguish 3 sequential phases which are the mobilization and commitment of partners (P1), the production and dissemination of learning (P2), and the transfer of knowledge (P2), with a fourth phase (P4) which deals with the governance, supervision and management of activities aimed at maintaining and sustaining the actions.
Benefits and Expected Outcomes – (1) Scientifiques : L’intégration de CARE© et ESOGER© dans un parcours de soins et services conventionnels de 1ère ligne permettra de valider un nouveau modèle de prise en charge des TNCM, et devrait rendre ce parcours plus fluide, continu et efficient en ce qui concerne la qualité de prise en charge et l’utilisation des ressources; (2) Individuelles : la meilleure prise en charge des dyades attendue doit réduire leur fragilité, favoriser l’autonomisation, améliorer leur qualité de vie, réduire le fardeau des aidants et favoriser leur participation sociale ; (3) Communautaires : la création d’interactions valorisantes entre les partenaires doit aboutir à un meilleur échange d’informations utiles et un renforcement des relations entre les acteurs de 1ère ligne ; (4) Institutionnels : pour le Centre de Recherche de l’Institut Universitaire de Gériatrie de Montréal (CRIUGM), le Laboratoire Vivant (LV) participera au développement d’une pratique de pointe ; pour l’Université de Montréal et Concordia, ce LV consolidera la collaboration université-communauté ; pour le CCSMTL, ce LV permettra l’implantation d’un projet télésanté répondant aux deux grandes priorités du plan d’action télésanté du MSSS ; (5) Économiques : CARE© et ESOGER© réduiront l’utilisation des soins et services inadéquats et, par voie de conséquence, allègeront les coûts financiers qui y sont liés.
(1) Scientific: The integration of CARE© and ESOGER© in a conventional 1st line care and services pathway will allow to validate a new model of management of MNCDs, and should make this pathway more fluid, continuous and efficient in terms of quality of care and use of resources; (2) Individual : the better management of the expected dyads should reduce their frailty, promote empowerment, improve their quality of life, reduce caregiver burden, and promote their social participation; (3) Community: the creation of rewarding interactions between partners should lead to a better exchange of useful information and a strengthening of relationships between 1st line actors; (4) Institutional : For the Centre de Recherche de l’Institut Universitaire de Gériatrie de Montréal (CRIUGM), the Living Laboratory (LL) will participate in the development of a cutting-edge practice; for the University of Montréal and Concordia, this LL will consolidate university-community collaboration; for the CCSMTL, this LL will allow the implementation of a telehealth project that responds to the two main priorities of the MSSS’s telehealth action plan; (5) Economic: CARE© and ESOGER© will reduce the use of inappropriate care and services and, as a result, alleviate the financial costs associated with them.