On March 11, 2020, 58 people from all parts of the province gathered on the unceded traditional territory of the Semiahmoo, Katzie Kwikwetlem, Kwantlen, Qayqayt and Tsawwassen First Nations in Surrey for the Pacific AIDS Network (PAN) Event entitled “Stories of Lived Experience” (SoLE). The program spanned from learning about leadership, to hearing from those with lived experience of HIV and/or hepatitis C, and then participating in group consultation that will inform the work of the PHSA Collective Impact Network (CIN) in the coming years. The event was greatly appreciated by participants and there is a desire for this to happen again.
The aim of SoLE was to take people with lived experience of HIV and/or lived experience of hepatitis C into an exciting new space for community building, in line with PAN’s mission and approaches; and to bring together peers to talk about leadership in all aspects of life, as well as the issues that arise from their lived experiences, both honouring differences and discovering similarities. For those who have attended the people living with HIV Forum at PAN Fall Conferences in years past, this would be a step beyond: a place to welcome those with different lived experiences to learn and support each other in health and growth. This event was envisioned in collaboration with Friends for Life (FFL), which worked with PAN to plan two peer gatherings on consecutive days to allow for the best possible attendance. The first event would be a celebratory coming-together of peers from the Friends for Life Women’s Wellness and Leadership Project. These events were made possible by the generous support of the PHSA.
Two days before the event, concerns started to be raised about COVID-19, and PAN contacted the PHSA and Fraser Health for their recommendations. In response, we ramped up our communication and practices regarding hygiene, sickness and physical greeting before and during the event. We also altered the food service and hygiene arrangements with the hotel. At that time, we were advised to go ahead – a situation that would change a week later.
Session 1 – What is Leadership and should I be here?
The day began with PAN’s PLDI Manager, Marc Seguin, talking about leadership. He emphasized that lived experience has value, that everyone is a leader, and that Leadership Development is actually Self-Development. It is not about information or techniques, but about liberating the leader within. Leadership is being as well as doing, and so should be internal and reflective. It starts from self-worth, self-care, and can show up in your family, close relationships and with your peers (before it impacts workplace and community). It is important to build a good foundation before you can help out. Leadership is also Community Building, and the wisdom in the room provides an opportunity to learn and support each other in health and growth.
Session 2 – Learning from each other
This session revolved around storytelling by people living with HIV and with lived experience of hepatitis C. Four peers spoke from the heart to the audience of lived experience peers, telling different but powerful stories of successes and challenges. In the evaluation, from the respondents (n=27), 77.8% rated it ‘excellent’, the rest ‘good’, making this session the most high rated.
Session 3 – Highlighting PAN’s work and opportunities to lead
PAN engages peers in its work in numerous ways every year, but not everyone is aware of this. This session was designed as an engaging way to highlight and promote some of these areas – as well as opportunities to get involved. Each of the following was presented as an IGNITE talk by PAN Staff that was followed by a question and answer time:
- Marc Seguin on Positive Leadership Development Institute (PLDI)
- Janice Duddy on Community-Based Research and Evaluation
- Evin Jones on Advocacy, Action and Policy change
- Simon Goff on Collective Impact Network (CIN)
- Monte Strong on Hepatitis C Leadership Project (HCLP)
Session 4 – Lived Experience specific breakouts
In the last main session of the day, we wanted to engage the voices of the peers in a meaningful way to inform PAN’s work, its collaborations and projects moving forwards. This time, we decided to let the room self-select into two breakout sessions that flowed from the last two talks in Session 3: one feeding back into the future work of CIN; and the other – to the work of the HCLP.
4A – Collective Impact Network
Simon Goff, PAN’s Collective Impact Network Coordinator, discussed the agreed upon priorities of the Collective Impact Network. Importantly, he stated that this is a great opportunity at this particular time to feedback ideas and advice to this network, because it is just about to start its next stage of planning, implementation and funding. In the session, the group had the opportunity to brainstorm the following questions about the four (of five) CIN priorities (the exception was hep C equity, which was addressed at another concurrent breakout): How can we achieve this? What are the barriers? What has worked well in your experience? What other ideas to you have?
PAN committed to taking this work (and data) to the CIN in May, and to report back to attendees.
4B – People with lived experience (PWLE) of hep C
Created specifically for people with lived experience of hepatitis C, this breakout was titled, “Campfire Cafés”. It was designed to serve two purposes. First, to be an interactive focus group that would yield lived experience input for PAN’s Hepatitis C Leadership Project needs assessment and also for the Collective Impact Network’s hepatitis C work team. Second, the session was to provide an opportunity for lived experience of hepatitis C to share stories and experience with one another in terms of successes and challenges as individuals and local communities.
The format of Campfire Cafés was to have four sets of questions posted around the room where the group would spend a few minutes at each station and generate answers as a group through discussion. Participants were also given a written survey that contained the same questions for them to answer as individuals. The session was designed and executed by the Hepatitis C Leadership Project Coordinator, Monte Strong.
Participants’ Response to the Event
Evaluation of the overall event shows that respondents were either very satisfied 71.4% (n=20), or satisfied 28.6% (n=8) with SoLE. Here are the responses to some of our goals:
When asked to reflect about the main takeaways from the event, participants provided the following reflections:
I live in a Province with strong warriors and dedicated leaders, and there are places that I can get involved and learn more and gain work skills and be a valuable asset.
There is a devoted community and individuals passionate for the pursuit of social justice for those people living with HIV and Hep C. Everyone there is ready to for paid work.
SoLE was a very successful event, and there is a call to continue to gather peers together. We will take the work done at SoLE forward to impact and inspire the CIN work and other PAN projects. The voice and engagement of peers is both valuable and essential, and we will continue to advocate for peers to be properly compensated for their work in all aspects of our sector.
Questions? Feedback? Get in touch!
Simon Goff, Executive Assistant and Collective Impact Coordinator, [email protected]