ConectAR: Collaborative network of patients with asthma and carers actively involved in health research: a protocol for patient and public involvement

Sá‐Sousa, Ana; Rodrigues, Tony A.; Fernandes, Sílvia; Santos, Ana Mafalda; Garcia-Lema, Isabel; Costa, Elisabete; Loureiro, Carla Chaves; Boechat, José Laerte; Reis, A Baía; Figueiredo, Daniela; Fonseca, João; Neves, Ana Luísa; Jácome, C I Oliveira

doi:10.23822/eurannaci.1764-1489.249

Cited by 2 publications

(4 citation statements)

References 12 publications

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“…This work is part of a larger protocol that aims to develop a network to promote the involvement of patients and the public in health research. 17 Focus groups were the approach chosen to allow interaction, sharing of experiences and capturing data on individual needs and beliefs. 18 This study was reported following the Consolidated Criteria for Reporting Qualitative Research checklist.…”

Section: Methodsmentioning

confidence: 99%

“…An exploratory qualitative study using focus groups was conducted with patients with CRD, carers and interested citizens. This work is part of a larger protocol that aims to develop a network to promote the involvement of patients and the public in health research 17 . Focus groups were the approach chosen to allow interaction, sharing of experiences and capturing data on individual needs and beliefs 18 .…”

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

Public involvement in chronic respiratory diseases research: A qualitative study of patients', carers' and citizens' perspectives

Areia,

Dias,

Matos

et al. 2023

Health Expectations

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IntroductionPatient and public involvement (PPI) initiatives involving patients with chronic respiratory disease (CRD) are rare. Therefore, this study aimed to explore the perspectives of patients with CRD, carers and interested citizens regarding the relevance and need for a PPI network and suggestions for its implementation.MethodsA qualitative study based on focus groups was conducted. Recruitment occurred through invitations on social media platforms and to patients who have participated in previous asthma studies of the team. Three focus groups were conducted, via video conference, using a semi‐structured guide. Thematic analysis was performed by two independent researchers and discussed with the extended team.ResultsFifteen patients with CRD, one carer and one interested citizen (13 females, median 36 (range: 18–72) years) participated. All participants acknowledged the importance of implementing a collaborative network and demonstrated interest in being integrated. Participants acknowledged the importance of their involvement in several phases of the research cycle. The main aim identified for this network was to facilitate communication between patients and researchers. Participants regarded the integration of patients, carers, researchers and healthcare professionals from different scientific areas as relevant. The use of digital platforms to attract members and support the work, together with group dynamics and regular meetings, were some of the most relevant practical considerations for implementing the network. The identified facilitators for their engagement were sharing experiences, researchers' and healthcare professionals' support and feedback and schedule flexibility. The identified barriers included the amount of time dedicated, low health/digital literacy and the potential detachment of nondiagnosed patients or those with low symptom impact in daily life.ConclusionPatients, carers and citizens acknowledged the relevance of implementing a collaborative network and demonstrated interest in active participation in every stage of the health research cycle. A deeper knowledge of the barriers and facilitators identified in this study could support implementing these initiatives in Portugal.Patient or Public ContributionThis study was designed by a research team that included one patient with asthma and one carer. They were specifically involved in building the study protocol and the interview guide. They also gave feedback regarding the electronic consent form and the short sociodemographic questionnaire created, namely by removing noncontributing words or phrases and rewording expressions. The lay summary was written by another patient with asthma. All participants of this study were invited to implement and integrate the ConectAR network—a collaborative network of research in respiratory health.Public SummaryIn Portugal, chronic respiratory patients do not have an active role as ‘coinvestigators’. This study aimed to acknowledge if patients and citizens considered a patient and public involvement network useful, whose main purpose would be to facilitate communication between patients and researchers. A study based on online group interviews was carried out with patients with chronic respiratory diseases and interested citizens, both recruited on social media platforms. Participants considered that bringing together patients, carers, researchers and healthcare professionals is valuable because sharing different experiences and perspectives may help patients to improve their daily lives and increase research quality. In conclusion, patients agree that implementing a collaborative network with researchers and healthcare professionals and participating in the health research cycle is quite preponderant. Acknowledging what can help and deter this network may be beneficial to implementing this type of initiative in Portugal.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Public involvement in chronic respiratory diseases research: A qualitative study of patients', carers' and citizens' perspectives

Areia,

Dias,

Matos

et al. 2023

Health Expectations

View full text Add to dashboard Cite

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“…Patients were involved in the conceptualisation, writing and review of three papers with a summary in plain language [ 5 – 7 ], and five abstracts for national and international conferences. Different patients were included as co-authors of these scientific outputs along with researchers.…”

Section: Impact Of Conectar On Researchmentioning

confidence: 99%

“…Despite its recognised importance, and the fact that a growing number of scientific journals require statements on how patients have been involved in research, there was no such established group in Portugal for respiratory research and digital health. We bridged this gap by creating ConectAR, a unique sustainable network of patients with chronic respiratory disease (CRD), carers, and the public involved as co-researchers [ 5 ]. The ConectAR has now been operational for a year and a half, and with this work, we aim to present the impact of this PPI network.…”

Section: Introductionmentioning

confidence: 99%

The impact of patient and public involvement in chronic respiratory disease research: the ConectAR experience

Sá-Sousa,

Figueiredo,

Dias Costa

et al. 2024

Breathe

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ConectAR: Collaborative network of patients with asthma and carers actively involved in health research: a protocol for patient and public involvement

Cited by 2 publications

References 12 publications

Public involvement in chronic respiratory diseases research: A qualitative study of patients', carers' and citizens' perspectives

Public involvement in chronic respiratory diseases research: A qualitative study of patients', carers' and citizens' perspectives

The impact of patient and public involvement in chronic respiratory disease research: the ConectAR experience

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