In September 2019, the International Psycho-oncology Society (IPOS) annual conference was held in Banff, Alberta with 4 days of talks, workshops, and presentations attracting >600 attendees from 50 different countries.
This was the 21st annual conference, but for the first time the conference was officially patients included: “committed to incorporating the experience of patients and experts in living their condition while ensuring that they are neither excluded nor exploited.” Five cancer survivors and care partners from across Canada were invited to provide vital input and perspective at the conference. The advocates had been awarded a scholarship to attend and were invited to participate in the full conference program with presentations from keynote speakers, poster sessions, and several breakout workshops. Many of them chose to attend different sessions related to their interests and advocacy.
Victoria J. Forster was one of these, myself being a 25-year survivor of childhood leukemia and I was privileged to be joined by 4 other advocates. In this essay, I want to introduce my fellow advocates and talk about our experience of the conference and how it has affected our advocacy in the months since those fall days in Banff in 2019.
What made you become an advocate?
Karen Haas is the mother of a child who was diagnosed with cancer when he was 2.5 years old, with recurrences at age 5 and 9, and came to the conference from the Toronto area, although she is a proud Albertan by birth.
“At some point early on, I realized that we as a family had an opportunity to speak up for those who do not wish to or cannot,” said Haas, who has been advocating for childhood cancer patients and survivors for 18 years, since her son was first diagnosed. “I recognized that I wanted to focus advocacy on the issues that were important to us as a family and to me personally,” she added.
Lorna Larsen became an AYA cancer advocate following her daughter Shanna's diagnosis of metastatic breast cancer at just 23 years of age. Shan passed away a few months later. Larsen has been a regular attendee at CAPO conferences, first participating in Halifax in 2008.
“I have a public health background and realized during my grief process that I might be able to use my health promotion skills to reach young women with their cancer risk. I have dedicated my work over the past 15 years to raising awareness and educating young women about their breast cancer risk and breast health information. The advocacy work helped me through my grief process, and also helped me find purpose,” said Larsen.
Jill Hamer-Wilson has been living with lung cancer since 2013 and was one of the founding members of one of the first lung cancer support groups in Canada in Ottawa.
“My diagnosis was a shock to me and my entire family, I didn’t know someone so young and healthy could get lung cancer. The more I started to learn about it, the more I realised that there are a lot of things in the lung cancer world that need to be better and I wanted to help make a difference,” said Hamer-Wilson.
Margaret Ng has worked for >15 years in workplace wellness and health promotion. After being diagnosed with brain cancer she decided to learn how nutrition can support her healing journey. Using nutrition and other lifestyle practices, Margaret transformed her health and the lives of others. As a Registered Holistic Nutritionist and as a cancer survivor her mission is to support health, healing, and well-being so others can thrive in life.
“Being diagnosed with brain cancer has been a transformational opportunity for me. A sweet treat disguised as a brain tumor. My unexpected guest has given me the opportunity to live my life with gratitude, do the things that I enjoy and love, and learn to do more of what I can do to keep my mind and body healthy and in balance, said Ng.”
What was your presentation highlight from the conference?
A highlight for me was seeing the presentation by Madison Tutt, a survivor of childhood cancer. She spoke about the importance of not only the core medical care she received, but also of the importance of psychosocial support during and after her treatment. As someone who was treated >2 decades ago when psychosocial support for childhood cancer patients was rare, it was incredible to hear about the impact of this through the lens of a fellow survivor, several years younger than me.
“I’ve been in the cancer world for a long time. I didn’t feel like I was in over my head. I could relate to and understand the presentations and research that was shared. The conference was very informative, and it was wonderful to learn about all of the similar research done in different parts of the world,” said Haas.
“Christine Chambers’ comment about it taking 17 years to translate research to practice struck a chord. We need to do things better and more quickly,” said Larsen. “The other thing that was so impressive about her presentation was the power of social media and how we can do things differently to address the needs of a population we are targeting,” she added.
“It was amazing to hear all the great research in the pipeline and it brings me great comfort in knowing that a lot of caring and brilliant people are working hard to advance patient care. Makes me feel so loved and supported by people across the globe,” said Ng.
What was your highlight interacting with clinicians and researchers at the conference?
Haas went to a session that included a presentation on Taking Back Control Together by Dr David Ogez from Montreal, and later had a discussion with him about a potential research idea. “I tend to not ask questions, but after the presentation, I asked a related question. He said he didn’t know the answer, but that it would be a great area of research, and then we shared lunch and talked. Throughout the conference, I never felt ‘I’m just a parent’ – it was easy and enjoyable to have conversations with everybody,” said Haas. “The opportunity to have open conversations made the conference so great. I was excited to be there and was a sponge for information. It did surprise me just how open everyone was to chatting and sharing,” she added.
“The highlight for me was talking with researchers from Princess Margaret Hospital (Toronto) working to address gaps in AYA with cancer palliative care. The researchers were so dedicated and passionate about their work. It was wonderful to speak with them directly, and special to see the work being done on this part of the AYA cancer continuum,” she added.
“People were so warm and friendly. I’ve never had so many people ask me my story. If I tell them my story, people ask more questions. At most scientific conferences, that's not always the case,” said Hamer-Wilson.
“The IPOS/CAPO conference was a wonderful learning opportunity. I was so impressed to hear from industry leading experts on psychosocial factors around cancer care from all over the world. I was surprised to learn how some low-to-middle income countries are so progressive with their focus on patient centered care and sensitivity to the psychosocial factors that affect health and healing. This highlights the need to go back to our routes and embrace nourishing traditions,” said Ng.
What were your impressions of the location and setting of the conference?
With many conferences being held in large city locations, IPOS/CAPO 2019 was unique for taking participants out of the city and into the mountains with stunning views from the conference center, fitting for the topics being discussed at the sessions. Many of the advocates felt this unique setting was beneficial to the experience of the conference.
“Going back to my grief process – one of the things that really helped me was getting into nature, doing some photography. Being in that serene environment in Banff was very calming and reassuring. It was really great to be in a natural setting for the conference,” said Larsen.
“I felt really refreshed at the venue, I came home and I painted a picture of Banff. I was very inspired by the venue and felt invigorated being there and energised and was grateful for the opportunity to be there in such a beautiful setting,” said Hamer-Wilson.
How has the conference experience affected your advocacy?
“I am now more aware of the openness of researchers to collaborate with parents and families. It also takes time, and I hope to carve some of that out of my schedule so that I can use the lived experience to work with researchers and others to improve lives,” said Haas.
“One of the main gaps I was seeing was palliative care for young people, because I felt so dramatically the lack of appropriate care for end-of-life for Shanna,” said Larsen, who has led several initiatives in Canada to address this including palliative care best practice guidelines for a nurses working group. “I think these are really great first steps for patients, family and friends but also for healthcare providers,” added Larsen, who presented on some of these initiatives at the conference in Banff.
“I came away from the conference with a drive to connect more deeply with the psychosocial oncology department at my local hospital,” said Hamer-Wilson, who since the conference has started getting to know more people in the department. “I’ve been more intentionally telling people about the resources available in psychosocial oncology. I assumed people knew already, but when I started talking about it, many were surprised,” she added.
“I’ve been to many conferences before, but this World Congress was exceptional. I left feeling inspired, hopeful, and proud of the work being done globally to improve the patient experience and outcomes. This learning opportunity has inspired me to advocate harder for advances in patient care and to remind health practitioners that humans need support as much as their illness,” said Ng.
What do you hope for in the future?
“I’ve seen a fair bit of progress in looking at treatment and survivorship support for AYAs, that gap is closing. Palliative care still needs some work, but the biggest gap in my mind in Canada is awareness and early detection. People want to know what they can do for self-care, we just aren’t addressing this need as a nation,” said Larsen.
“It matters that people in psychosocial oncology advertise to the cancer patients what they have to offer, and it's also very important that hospitals dedicate budget money to psychosocial oncology,” said Hamer-Wilson. “Getting a lung cancer diagnosis or any cancer diagnosis is hard, we need to help provide a softer landing for people. People with lung cancer are often told to get their affairs in order and people need help dealing with that,” she added.
“Advocacy can sometimes be very disappointing and frustrating. You have to be grateful for small successes. I think the conference rejuvenated my passion to try and make a difference,” said Larsen.
What advice would you give to researchers who want to involve advocates in their research?
There are now several schemes aimed at involving patient and caregiver advocates in research and clinical conferences. Notably, the AACR scientist > survivor program invites advocates from all over North America to participate in the conference, provides training and resources on advocacy, and also asks advocates to present a poster at the conference. However, many conferences like IPOS/CAPO are just at the beginning of integrating advocates into their conferences. How to do this most effectively will be a progressive and dynamic learning process for all involved, but the advocates have some suggestions for researchers who want to start working with patient and family partners:
“Involve patients and families from the very beginning,” said Haas. “This can include formulating what is actually being researched (which should be based on what patients and families ask about), being part of the grant application process, expanding patient/family advisory committee, and developing the protocol and informed consent,” she added.
“The most important aspects of working with patients and care partners are respecting their participation in the process, listening carefully and acknowledging their contribution to the research,” said Larsen.
“Involve advocates right from the earliest stages since thoughtful advocates bring significant contributions,” said Hamer-Wilson. “It's important for researchers to take the initiative with survivor advocates from starting the relationship, deepening the relationship and seeking out ways for advocates to be partners throughout the research process. Provide clear avenues of communication for your advocates, listen to and encourage them to find and use their voice. Remind them that their voice matters,” she added.
“The patient/family members of the research team should be considered equal members. Their lived experience is invaluable,” said Haas.
It is our hope that our experiences and reflections will inspire both future IPOS/CAPO meetings and other psycho-oncology conferences to continue and increase their commitment to ensuring that patients and care partners are included.