Blending lived experiences and psychosocial theorizing: Toward co-design of patient decision aids in genetic cancer risk assessment

Featuring: Kelly Kohut, Lesley Turner, Dr. Mary Jane Esplen

Learning will be shared from a successful pilot workshop in London involving diverse patient collaborators who led small group discussions about what is important to them when they make decisions. Discussions were sparked by short, lay-friendly presentations from a psychologist about select decision-making theories. An artist sketched a live visual summary. Reflexive thematic analysis was used on qualitative data from the workshop to inform the conceptual framework and logic model for a patient decision aid (PtDA) to complement shared decision-making. The PtDA includes sessions on dealing with uncertainty, talking to family, personalised cancer risks, management (e.g. screening, surgery, chemoprevention) and support.   At the CAPO pre-conference workshop, we will share and promote our innovative, creative approach to co-design a PtDA and how we incorporated patient lived experiences and preferences to underpin the theoretical framework. Interactive, small group discussions will be facilitated to explore additional viewpoints from patients, academic and clinician participants in the workshop about what is important when patients make decisions. There will be a focus on justice, equity, diversity and inclusion. We will explore strategies for dissemination of our approach to other groups in the community that have been traditionally excluded from or silent in research and resource co-design. 

1. Explore, share, learn and discuss the psychosocial aspects of decision-making to manage cancer risk, using the example of a genetic cancer predisposition.

2. Appreciate the importance of collaborating with patients and other stakeholders as equal partners throughout the conception co-design of a patient resource, using the example of a digital, interactive patient decision aid. Encourage and inspire others to take this approach.

3. Appreciate the lack of justice, equity, diversity and inclusion in historical research and co-design of patient resources, and debate the best strategies to start with people to learn from their lived experiences and preferences, taking innovative and creative approaches to maximise impact and patient benefit.

Nutritional oncology in action: Understanding patients’ dietary and eating-related issues through interactive discussions and live cooking

Featuring: Amy Symington

This workshop aims to highlight the importance of providing practical eating and dietary guidance to patients experiencing common side effects of cancer treatments. All cancer treatment modalities cause side effects that diminish the ability or desire to consume an adequate diet. If not managed, they may lead to undernourishment, reduced treatment tolerance and quality of life, and poorer patient outcomes. However, cancer care teams may not be equipped to provide appropriate, practical, non-medical advice or resources to address these side effects. This workshop comprises: 1) A presentation on the common eating and diet related side effects (e.g., poor appetite, changes in taste or smell, dry or sore mouth/throat, nausea/vomiting, diarrhoea, fatigue, brain fog, altered mood) and newly developed resources including a compilation of food, nutrition, and eating guidance for managing side effects, and a companion cookbook with tailored, plant-based recipes that meet most dietary/cultural restrictions to help implement this guidance; 2) A live cooking demonstration of recipes, with sampling; 3) Breakout discussions and group sharing to elucidate how nutrition advice is being or can be addressed in cancer care programs, perceived needs for resources including for culturally diversity and dietary restrictions, and experience in dealing with patient needs in practice.

1. Expand awareness and knowledge of the important role of practical diet and eating related guidance for patients experiencing common side effects of cancer treatments.

2. Increase knowledge of specific eating and diet related advice for patients, and available resources developed for this purpose that may help patients and their caregivers manage common side effects at home.

3. Gain new perspectives on potential gaps in cancer care programs, and how these resources may be used in their own practice, either directly or as a template for similar, culturally appropriate resources for patients, engaging dietitians and culinary nutrition professionals in cancer care, and various delivery modalities such as supper clubs, live or virtual cooking demos, or online resources.

Experience Mapping 101: Connecting human-centered design to value-based cancer care solutions

Featuring:  Eva Villalba, Olivia Tischler

This workshop will provide a guided and hands-on experience for creating patient-informed experience maps – overarching and holistic visual representations of a patient’s journey that traces their interactions over the course of their care pathway, with consideration of medical, physical, emotional, and mental lenses of the patient experience. Workshop facilitators will present key steps in experience mapping and share strategies and tools for collaborating with patients/caregivers in high impact research that help identify gaps and optimize the trajectory of care to improve health outcomes for patients. Since value is defined as the outcomes that matter to patients over the entire trajectory of care, this workshop helps us with that critical first step of codesigning the outcomes and the trajectory with people with lived experience. This workshop involves main components, where participants will practice building empathy and capturing the patient experience, synthesizing data, and visualizing in an experience map. Upon workshop completion, participants will have learned best practices for optimal patient/caregiver engagement and practical knowledge for experience mapping.  

1. Develop a more human-centered approach to understanding the holistic patient experience And how that can play a role in psychosocial oncology research.

2. Understand how to use various research tools to elicit patients/caregivers’ experiential knowledge that can serve to optimize care trajectories & health outcomes.

3. Leave with a foundational knowledge of experience mapping, and how it can be applied to their own practice.

Cultural realities in cancer care: Understanding the current state and exploring hopes for the future

Featuring: Tiffany T. Hill, Param Gill, Cheryl Heykoop

In Canada, nearly 8000 young adults between the ages of 15-39 are diagnosed with cancer each year and their unique needs are largely unmet by cancer care systems. This is especially true for racialized young adults. As such, the Anew Research Collaborative at Royal Roads University is conducting an 18-month pilot study to better understand young adult cancer for racialized young adults and explore how cancer care systems can better respond to their specific needs. This pre-conference workshop will (1) share preliminary findings to better understand cultural realities in cancer care for racialized young adults; (2) identify culturally safe ways to improve cancer care for racialized young adults and their connected futures; and (3) discuss learnings and ethical implications of a participatory, patient-oriented research study designed with racialized young adults. This research is funded by the Canadian Institutes for Health Research Pediatric Cancer Research Initiative and the partners include: Young Adult Cancer Canada, BC Cancer, InspireHealth, BC SUPPORT Unit, Royal Roads University, the Innovation Support Unit, and racialized patient partners with lived experience of cancer. Racialized young adults with lived experience with cancer will be involved in designing and presenting this pre-conference workshop and workshop chairs include: Tiffany Hill, Param Gill, Cheryl Heykoop, and Ada Okonkwo.

1. Understand lived experiences of cancer care for racialized young adults

2. Identify culturally safe ways to improve cancer care for racialized young adults

3. Discuss ethical implications of a participatory, patient-oriented research study designed with racialized young adults