| Summary: |
Patients and members of the public bring a unique perspective to health research. Patients and Public Involvement (PPI) in every phase of the research cycle is crucial to improve the research and strengthen their relevance and impact. Despite its recognised importance, in Portugal, no established group has been established to date. More specifically, in the field of digital health and respiratory research. Chronic respiratory diseases (CRD), such as asthma and chronic obstructive pulmonary disease (COPD), are a source of burden, with negative impacts on morbidity, mortality and quality of life. Amongst patients with asthma, those with severe asthma have a disproportionate morbidity, mortality, and costs. We previously conducted the Portuguese National Asthma Survey and estimated that 6.8% of the population had asthma and almost half (43%) had non-controlled asthma, associated with significantly worse quality of life. To improve disease management, reduce exacerbations and improve patients' quality of life, our research group (PaCeIT-Patient Centered Innovation and Technologies) has been focussing on the design, validation, assessment and implementation of easy-to-use technologies to deliver personalised care and support both diagnosis and management of chronic diseases. For instance, we developed and validated Patient-Reported Outcomes Measures such as questionnaires for asthma screening and control; produced digital educational tools and content for patients with CRD (HMSP-IDSIM/SIM/0018/2009) and created pulmonary rehabilitation programs and educational content for both patients with COPD and their carers. We also developed an app to measure and improve adherence to inhaled treatment (POCI-01-0145-FEDER-029130) and an integrated system for disease self-management and personalized coaching for patients with CRD (NORTE-01-0247-FEDER-033275). Additionally, we have also explored the impact of partnering with patients using digital technologies (i.e. patient h  |
Summary
Patients and members of the public bring a unique perspective to health research. Patients and Public Involvement (PPI) in every phase of the research cycle is crucial to improve the research and strengthen their relevance and impact. Despite its recognised importance, in Portugal, no established group has been established to date. More specifically, in the field of digital health and respiratory research. Chronic respiratory diseases (CRD), such as asthma and chronic obstructive pulmonary disease (COPD), are a source of burden, with negative impacts on morbidity, mortality and quality of life. Amongst patients with asthma, those with severe asthma have a disproportionate morbidity, mortality, and costs. We previously conducted the Portuguese National Asthma Survey and estimated that 6.8% of the population had asthma and almost half (43%) had non-controlled asthma, associated with significantly worse quality of life. To improve disease management, reduce exacerbations and improve patients' quality of life, our research group (PaCeIT-Patient Centered Innovation and Technologies) has been focussing on the design, validation, assessment and implementation of easy-to-use technologies to deliver personalised care and support both diagnosis and management of chronic diseases. For instance, we developed and validated Patient-Reported Outcomes Measures such as questionnaires for asthma screening and control; produced digital educational tools and content for patients with CRD (HMSP-IDSIM/SIM/0018/2009) and created pulmonary rehabilitation programs and educational content for both patients with COPD and their carers. We also developed an app to measure and improve adherence to inhaled treatment (POCI-01-0145-FEDER-029130) and an integrated system for disease self-management and personalized coaching for patients with CRD (NORTE-01-0247-FEDER-033275). Additionally, we have also explored the impact of partnering with patients using digital technologies (i.e. patient health records) on health outcomes and safety. Recently, the need to gather evidence on Portuguese reality on severe asthma, led us to develop the Portuguese severe asthma registry (RAG) in collaboration with a network of severe asthma specialists (REAG). This is an ongoing national web-based
disease registry of patients with severe asthma used by physicians at clinical visits. As patients are the focus of our research, they were involved in all projects, but mostly as consultants for the refinement of the technology and/or in its late phases. However, during these projects we increasingly recognised the thorough involvement of patients as key stakeholders for meaningful research projects. The main aim of ConectAR is to develop a sustainable network to promote the involvement of patients with CRD and their carers in every phase of the health research cycle. Specifically, we aim to: 1) create the ConectAR network (mission, governance and research agenda); 2) develop sustainable communication strategies and tools to recruit and engage patients and carers as co-researchers as part of the ConectAR network; 3) to test the feasibility of the involvement of the ConectAR collaborative network in the design and implementation of a mHealth study with the CARATm mobile application (app) for patients with moderate-to-severe asthma; 4) to summarise
the learnings and propose recommendations to inform future PPI in health research. The ConectAR project team will also include a patient with asthma and a carer of a patient with asthma as team members, and they were involved from inception, including |