From British Columbia to Brazil: Patient Engagement Goes Global

When Patient Voices Network patient partner Aline Silva saw the chance to combine her passion for health care with her experiences as a patient, she jumped at the chance. Aline’s dedication to patient engagement has gone global through her connections to Brazil and Canada. One of our Engagement Leaders, Jami Brown, chatted with Aline about her experiences.

Tell me about what drew you to being involved with patient engagement as a patient partner and as a health care researcher.

Nowadays, I see many factors that brought me where and who I am. I grew up being one of the caregivers of my youngest brother since I was eight years old. He is a person with disabilities. Today he’s 30 years old and he still doesn’t walk or talk and needs us for everything. I named my son after the movie “Lorenzo’s Oil,” where a family pursues a cure for their kid. I always wanted to do something related to health care because of a need inside me.

In 2010, my team was planning the attendance at my first Health Technology Assessment International (HTAi) Annual Meeting in Dublin, Ireland. We were checking the conference program and my boss at the time told me: 

“Involving patients in the health technology assessment (HTA) process is a new theme and only a few people are talking about it. It seems promising and I know you’ll like attending these sessions.” 

When I returned, I wrote a report about what I saw and I was utterly in love with all the discussions I followed. In the same year, I started my master’s and decided to study patient and public involvement. 

In April 2013, two months after I finished my master’s about patient engagement in HTA, I was diagnosed with breast cancer. I saw myself, a health professional and researcher, again on the other side of the table. I noticed that my professional plus personal experience could help both sides, mainly because I have access to all different stakeholders due to this journey.

What roles are you currently playing between research and patient partner?

Currently, I’m part of a research group from the University of Brasilia, Brazil and a postdoctoral research fellow at the University of British Columbia Okanagan, Canada. Besides that, I am a steering committee member of  the HTAi Patient and Citizen Involvement in HTA Interest Group and the co-lead of the project Stakeholders’ perspectives of impact of patient involvement in HTA.

I’m also happy to volunteer as a patient partner with the Patient Voices Network. This role gives me the chance to learn so much from the amazing tools developed at PVN and through several capacity-building opportunities. I’m also an independent patient advocate in Brazil, where I love sharing my learnings, experience and journey with other patients to inspire and empower them to get involved with their health care and health decision-making. 

Can you provide a bit of background about how you got involved in the HTAi conference? What was your main goal for attendance? How do you think HTAi is beneficial to increasing meaningful patient engagement?

I have been a regular HTAi attendee and a society member since 2010. It started because of my work and became a space in which I exchange so much with different stakeholders worldwide. I consider our chair another important mentor in my pursuit to be a better person and professional. This group and its chair are committed to spreading the word of patient and citizen involvement across health technologies’ lifecycles. At HTAi 2014, I was invited to share my personal experience as an oncological patient at this conference and I believe this was one of the first times this happened. 

Last year, a patient representative from Latin America was a main plenary speaker. Besides granting students and patients, the society started the PCIG PASS program in 2021, encouraging patients and representatives to attend the conference. This year, the conference will happen in the Netherlands and each day’s plenary includes a patient representative speaker. I was responsible for the PASS program promotion and we had an unprecedented number of applications (50% from South America). In the end, this program will enable 60 patients, patient representatives and/or caregivers to attend this conference virtually or in-person for free. I got a grant to attend it as a PVN patient partner!

What interests you the most about the current state of patient engagement? What’s important to focus on?

The state of patient engagement varies in different places and contexts. Canada is one of the countries where I see this matter being addressed seriously throughout many processes. And it makes sense! After all, public participation is a characteristic of solid democracies. In Latin America, it has been developing gradually in the last few years, mainly regarding HTA, in which Brazil is a pioneer. This is mainly because social participation is a legislative mandate of the Brazilian Public Health System, called SUS (Sistema Único de Saúde).

I’ve seen more interest in the subject and new participation methods everywhere, but it’s important to focus on meaningful engagement to avoid tokenism and on impact and evaluation of patient engagement. Currently, I’m very focused on consensus building methods, strategies for meaningful engagement and impact measurement.

Tell us more about how you are sharing your learnings about BC with Brazil.

I first came to BC in 2018 to do an internship as part of my Ph.D. studies at the Centre for Clinical Epidemiology & EvaluationC2E2/BC SUPPORT Unit/UBC. I spent one whole year emerged in patient engagement and patient-oriented research. I learned so much about it. I went back to Brazil looking forward to sharing my knowledge, reflecting and implementing innovative ideas I saw here. This participant observation was the cherry on top of my research, in which I deepened my understanding of the Brazilian patient and public involvement (PPI) and proposed a framework for action to improve PPI, in collaboration with my amazing mentors.

Since I am one of the pioneers in researching PPI in Brazil, I have been continually involved in many areas to raise awareness about the need to engage patients in health care decision-making genuinely. Wherever I go and whenever I have a chance, I engage community, patients and reinforce the necessity of improving participatory processes. It can be at work, through seminars, panels, posters, webinars or conferences. It’s where my career is focused. 

What do you think health care organizations can learn from engaging patient partners? Where should they focus their efforts?

Health care organizations can learn so much from patient as partners the same way we learn from people who have different experiences than ours in our daily life. If we don’t live a determined reality we want to improve, we need to ask those who live it what they need. Without doing it there is a huge risk to miss important details and waste energy building empty solutions.

An organization’s efforts should be patient-centred and directed to involve patient as partners throughout all processes, from beginning to end, to achieve the best health outcomes.

What matters to you, as a patient partner? 

I already was mistreated for being “only” a patient and I was also left out by people who claim to work and research for patients, but I always knew my experience is full of value and importance. So, what I want is to have a voice and be effectively heard, to feel part of the processes and genuinely included. I don’t want to be afraid of speaking out. I want to feel supported and understood by peers and people I collaborate with.

What lessons can we learn from Brazil?

That patient and citizen involvement is an ongoing process and there is no “one-size-fits-all” model. We need to look at other instances and pay attention to successful models, to what is working and what is not. That’s why patient-oriented research and actual collaborations between all essential stakeholders are so important. But each country has developed working methods according to its different health care contexts and health systems organization.

Any other thoughts that you think are important to share?

I’ve noticed that my eyes are open wider to some matters because of my proximity to the Canadian health care processes, such as IDEA (Inclusion, Diversity, Equity and Access), tokenism, stigma, cultural safety, impact, evaluation and knowledge translation/mobilization.