ConectAR – Collaborative research network: Advancing patient and public involvement in Respiratory and digital health

The ConnectAR project aims to develop a sustainable network to promote the involvement of people with chronic respiratory diseases (CRD) and caregivers at all stages of the health research cycle.

Patients and the general public bring a unique perspective to health research. Patient and public involvement (PPI) at all stages of the research cycle is essential to advance research and strengthen its relevance and impact. Despite its growing importance, there is no group dedicated to PPI in health research, in particular in respiratory disease and digital health research in Portugal.

Chronic respiratory diseases (CRD), such as asthma and chronic obstructive pulmonary disease (COPD), are sources of substantial burden, including morbidity, mortality, and reduced quality of life. Among asthma patients, those with severe asthma have disproportionate morbidity, mortality, and costs. In Portugal, we conducted the National Asthma Survey and estimated that 6.8% of Portuguese had asthma and that almost half (43%) had their asthma uncontrolled, associated with worse quality of life.

To improve disease management, reduce disease exacerbations, and improve patients’ quality of life, our research group (PaCeIT-Patient-Centered Technologies and Innovation) is focused on the design, validation, evaluation, and implementation of patient-friendly technologies and personalized, patient-driven services for diagnosis and management of chronic diseases. For example, we have developed and validated Patient Reported Outcome Measures (asthma screening and control questionnaires); produced digital educational tools and content for CRD patients (HMSPIDSIM/SIM/0018/2009); created respiratory rehabilitation programs and educational content for COPD patients and their caregivers. We have also developed a mobile application (app) to measure and improve adherence to inhaled treatment (POCI-01-0145-FEDER-029130) and an integrated system for CRD self-management and personalized “coaching” (NORTH-01-0247-FEDER-033275). We have also explored the impact of patient involvement in the use of digital technology (such as electronic health records) on clinical outcomes and patient safety. Recently, the need to collect data on the Portuguese reality of severe asthma led us to develop the Portuguese Severe Asthma Register (RAG in Portuguese) in collaboration with the Network of Experts in Severe Asthma (REAG in Portuguese). This ongoing national registry of patients with severe asthma is web-based and used by physicians during medical consultations. Patients are the focus of our research and they have been involved in all of the group’s projects, but mainly as consultants for the refinement of the technology and/or in the final stages of the projects. However, during the development of all these projects, our recognition of the integral involvement of patients as the key to relevant research projects with significant impact has increased.

Thus, the main goal of ConectAR is to develop a sustainable network to promote the involvement of CRD patients and caregivers in all phases of the health research cycle. Specifically in this project, we aim to: 1) create the ConectAR collaborative network (mission, governance, and research agenda); 2) develop sustainable communication strategies and tools to recruit and engage patients and caregivers as co-investigators within the ConectAR network; 3) test the feasibility of involving the ConectAR network in the design and implementation of an mHealth study with the CARATm app for patients with moderate to severe asthma; 4) summarize learnings and propose recommendations to inform future PPI initiatives in health research.

The ConectAR project team includes one asthma patient and one caregiver, and they have been involved from the beginning, including in the construction of this proposal. Patients will be involved in all stages of this project: in the creation of the ConnectAR network (Task 1); in the development of the communication strategy and tools (Task 2); in the design, analysis, and interpretation of the results of the mHealth study (Task 3); and in the management and dissemination of the project (Task 4).

At the end of this project, we hope to establish a collaborative network of CRD patients and caregivers involved in health research. In addition, we hope to demonstrate the viability of the ConnectAR network at the conclusion of the development of the CARATm app and include the learnings from this project in the development of recommendations for future PPI initiatives in other health research domains.

The team leaders have experience in asthma research, digital health and the development of digital content and patient tools. In addition, this multidisciplinary team has skills and experience in 1) patient-centered programs for self-management, rehabilitation and psychoeducation, 2) design and communication, 3) mobile health technologies and 4) clinical and research. Together with patients and caregivers, we are confident in the success of this pioneering project.

FCT – Portuguese Foundation for Science and Technology

48,691.66 Euros

48,691.66 Euros

EXPL/SAU-SER/0439/2021

01-01-2022 to 30-06-2023

Ana Isabel Alves de Sá e Sousa Santos (PI), Ana Luísa Fernandes Neves Soares, Emília Moreira, Cristina Jácome, João Fonseca, Isabel Lema, Daniela Figueiredo