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ConectAR has demonstrated the feasibility and value of involving patients with chronic respiratory diseases and caregivers as co-researchers, actively considering their perspectives from project inception to implementation and dissemination https://bit.ly/3Oq13se

Introduction

Patient and public involvement (PPI) is gaining recognition as a key component of patient-centred care and good research practice [1, 2]. Patients and members of the public (meaning patients, potential patients, carers, and people who use health and social care services [3]) provide a unique perspective on research, enriching investigation with personal knowledge and experience, suggesting new ideas and ensuring research priorities are aligned with their needs. PPI in health research is thus believed to improve its quality, relevance and ethics [2]. Strategies to achieve PPI in research and principles of patient partnership are available to provide guidance for researchers regarding how to approach this [2, 4]. 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.

Impact of PPI on ConectAR implementation

ConectAR was both created and implemented with a grounding in innovative communication approaches, and a primary focus on the perspectives of patients and the public. Since April 2022, adult patients with CRD and carers were invited to join ConectAR through social media platforms (Facebook and Instagram through ConectAR, and Facebook through the asthma interest group of the Portuguese Society of Allergology and Clinical Immunology) and institutional websites (Faculty of Medicine of University of Porto, Center for Health Technology and Services Research), as well as direct email invitations to patients who participated in previous asthma research projects with the team and to physicians that collaborated in these projects. Through a qualitative exploratory study, we were able to show that patients, 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. In addition, their perspective regarding the network mission, vision and governance grounded the implementation of ConectAR [6]. We also conducted a workshop with initial members and researchers to establish a communication strategy, and tools for recruitment and engagement. It was suggested that communication between the coordination team and ConectAR members should be done in an informal environment and using simple language through email, periodic face-to-face and virtual meetings, and activities for team-building and science communication through the arts. During the workshop, we defined different activities to be implemented, and we organised the members into small working groups according to their motivations and interests. This strategy supported the distribution of power inside the network and boosted collective action and empowerment.

Feedback from ConectAR members revealed that communication, a sense of belonging, and group heterogeneity were some of the secret ingredients to the successful implementation of PPI:

“We felt very comfortable talking to them, we felt that they wanted to listen to us and they want our feedback to push the project forward.”

“The researchers make us participate in an easy way, and their view about each person's abilities inside the group and how each person can help is amazing. I think this is what makes our project go well.”

“I was surprised by the team's agility in making things happen and never being closed off to crazy ideas.”

“They made us feel like an integral part of the project, and all the joys were shared via WhatsApp, email and it was one of the things that excited me the most, I am being part of something important.”

While some members cited time constraints as a challenge, they also commended the team's flexibility in accommodating their schedules and commitments:

”We all have different schedules, sometimes they don't match, and I need to meet the group when I'm on the bus or the metro, but this barrier can be overcome.”

“One of the things we knew since the beginning was the time we would need to be committed to the project, but when we were unavailable, you would say ‘ok, you cannot work on this, but maybe you could help on another thing.' It was my case.”

Impact of ConectAR on research

Currently, the ConectAR network has 137 members (median age 36, range 18–72 years): 73% patients, 12% carers and 15% interested citizens (including healthcare professionals, students of health sciences and members of patient organisations). The coordination team that was composed exclusively of researchers now includes three asthma patients and one carer along with the researchers (figure 1).

FIGURE 1

Members of the coordination team at a national congress.

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. Additionally, patients were also involved in the conceptualisation, writing and submission of one mHealth research protocol (unpublished).

The research projects that involved ConectAR patients were recognised by scientific societies. The network was awarded three prizes for the best projects in asthma by a national society (Sociedade Portuguesa de Alergologia e Imunologia Clínica) and one prize for the best abstract in patient-centred research by an international society (European Respiratory Society).

Members shared their experiences in various scientific activities, expressing their pride and fulfilment in contributing to research:

“I had the opportunity to help in a translation, it was easier to manage my time, ones do one thing, others other things and we can build the foundation to do something great.” [Translated one of the nine EPAP courses.]

“As a teacher I'm used to bureaucratic work but I never thought we would need so many steps to submit a project. It takes a lot of behind-the-scenes work to write a scientific project.”

“I really enjoyed being there [congress], I felt a bit like an alien. We were all together as group, I enjoyed the spirit of unity. I think there was some curiosity about what was being done, it sparked interest.”

“It was amazing that we could be authors of a scientific article. Having my name in a scientific paper was very exciting to me and I know that I had only a small contribution. It makes us feel important in the project.”

“[…] diversity of people that this project managed to bring together, we are all very different. Initially, I thought we would be able to bring in more people with serious problems, and we reached people with recent asthma diagnosis, but who also embraced the project”.

Impact of ConectAR in the community

Impact of research explores changes in the “real world”. To reach a broader audience, we produced a website (https://redeconectar.pt/), social media accounts and started the development of a metaverse platform [8]. Understanding and awareness are being gradually raised based on patient preferences and by patients themselves. As such, the content of these channels includes facts based on scientific evidence and testimonials of how to live with disease and overcome obstacles. So far, the Instagram account has 446 followers. The most viewed posts (number of views) focused on asthma symptoms in children (43 000), a testimonial (23 000) and what to do during an asthma attack (21 000), suggesting that this kind of content can be useful to promote CRD health literacy and disease self-management. Based on the messages left on social media accounts, we believed these posts may also have attitudinal impact on people's health decisions.

Education is a key element in PPI initiatives [9]. Eight members of the network translated to Portuguese the self-learning European Patient Ambassador Programme (EPAP) of the European Lung Foundation [10]. This is a training tool that introduces patients/carers to some of the skills and knowledge needed to represent patients successfully in several settings, including research contexts [10]. Also, for educational purposes, a theatrical play on how to deal with an asthma attack was written based on scientific evidence, reviewed by a patient with severe asthma, and performed for the public by one professional actor and a carer.

A total of 16 patients/carers with no previous experience acquired new skills in writing and submission of scientific papers, speaking in public, translation of online programmes, study design and presence in scientific meetings. These skills were mainly developed through collaborative work with the researchers, but some patients also completed the EPAP (which at that time was only available in English).

Members of the ConectAR had an overall good experience within the network:

“This is a shared project that makes total sense, not only for asthma, but to other diseases as well.”

“The project should run at cruising speed so we can be able to reach more people, and we need to continue even more stronger.”

Conclusion

ConectAR has demonstrated the feasibility and value of involving patients with CRD and their caregivers as co-researchers, actively considering their perspectives from project inception and engaging them in coordination, scientific and dissemination activities. While this article primarily focuses on the impact from the patients' perspective and the resulting outputs, it is imperative to explore researchers' feedback comprehensively in future endeavours. A deeper understanding of the barriers and facilitators to PPI can provide invaluable insights for the implementation of similar initiatives in Portugal, ultimately leading to the development of informed recommendations for future PPI actions.

Acknowledgements

We would like to thank the late Isabel Saraiva, former Chair of the European Lung Foundation, for her enthusiastic mentorship of ConectAR network since its inception. We thank all the patients, carers, and citizens from the ConectAR network.

Footnotes

Conflict of interest: The authors declared no potential conflicts of interest in relation to the subject of this article.

Support statement: This work was financed by national funds through FCT – Fundação para a Ciência e a Tecnologia I.P., within the scope of the project ref EXPL/SAU-SER/0439/2021 ConectAR - Collaborative Network: involvement of patients and the public in the advancing research in respiratory diseases and digital health.

Received October 9, 2023.Accepted January 16, 2024.http://creativecommons.org/licenses/by-nc/4.0/

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