Building Bridges

Hosts: Shatha Atieh and Kelly Ho

• Transition: Brief welcome speech by the event coordinator, outlining the goals of the day: inclusion, collaboration, and accessible science.
• Details: Highlight patient partners' crucial role in research and the importance of plain language scientific communication.

Speaker: Angela Woollam (Patient Partner)

• Topic: "The Patient’s Perspective in Science: Why Understanding Matters"
• Details: Angela will share her journey as a patient partner and how collaboration with researchers has impacted her experience and outcomes. She will also give her perspective on the importance of plain language scientific communication in research for patients and patient-partner communications
• Q&A session: After the keynote, attendees will be encouraged to reflect on the talk and ask pertinent questions

About Angela Woollam:

Angela teaches English and Communications to students, including nursing and health science students, at Algonquin College in Pembroke, Ontario.  She has an M.Phil in English Studies and a Ph.D. in English Literature.  As a patient partner, Angela brings the perspective of a parent of a child with a neuromuscular condition.

Speakers: Anna Samson (Patient Partner, Communications and Social Media) & Hetty Mulhall (Health Research Facilitation, Communications and Public Relations)

• Topic: "Clear and Conscientious Communication: why clear language co-creation boosts research impact"
• Details: Speaker will explain the importance of using plain, jargon-free language in research, including the integration of patient partner communities in scientific communication to engage broader audiences, especially patient partners. Speaker will also give tips/suggestions on how to better convert scientific research in ways that are understandable for patient partner communities, including about different communication options and channels.
• Q&A session (2 mins): After the presentation, attendees will be encouraged to reflect on the talk and ask pertinent questions

About Anna Samson:

Anna Samson (they/she) is a desi, queer, disabled person living in what is colonially known as Toronto, Canada. They are a writer, poet, patient partner, and an advocate for disability and mental health. They have ankylosing spondylitis, fibromyalgia, premenstrual dysphoric disorder and more. They have experienced AS and fibro symptoms since childhood but it worsened during their teens. Anna now uses a cane full-time and frequently uses a walker.

They have a Bachelor of Arts in English and use their writing and communication skills to create content about their conditions and how they affect their life. They are passionate about using their intersectional lived experiences to raise awareness for chronic illnesses, disabilities, mental health, and patient engagement in research. They were also a Social Health Award Finalist in 2022 for Advocacy Trailblazer!

Anna has completed the Patient Engagement in Research Training Program through the Canadian Arthritis Patient Alliance and is a part of several research projects. They have also completed the Patient Leader Certification Program from the Social Health Network. Additionally, as a Patient Engagement Research Ambassador with the Institute of Musculoskeletal Health and Arthritis under the Canadian Institutes of Health Research, Anna champions patient engagement at the forefront of research, amplifying perspectives from people with lived experience.

Follow along with their advocacy on social media @DisabilityWithAnna

About Hetty Mulhall:

Dr. Hetty Mulhall is Associate Scientific Director at CIHR-IMHA. She holds a degree in Veterinary Medicine (VetMB) and an MA in Natural Sciences (Zoology and Human Psychology), both from the University of Cambridge, UK. Hetty was previously Senior Account Manager in Communications and Public Relations with clients across animal and human health, biotechnology, sustainability and pharmaceuticals. Her clinical training and role fuelled a passion for public health and knowledge translation; it was evident that animal health and welfare often mirrored the status of human health. Hetty is interested in an interdisciplinary approach to human health research facilitation, drawing on tools from a broader range of professions, and maintaining a one health lens.

Panelists:

• Shatha Atieh (PhD Student)
• Kelly Ho (PhD Student)
• Anna Samson (Patient Partner, Communications and Social Media)
• Angela Woollam (Patient Partner)
• Hetty Mulhall (Health Research Facilitation, Communications and Public Relations)

Details: The panel will discuss challenges and successes in bridging the gap between researchers and patient partners, focusing on collaboration and communication strategies.

Purpose: The purpose of this portion of the workshop is to help trainees prepare for their in-person flash talks and poster sessions by providing them with the opportunity to convert scientific research into lay language.

Details: After students are broken up into Zoom breakout rooms, the moderators will introduce the workshop by giving a 5-minute presentation introducing the objectives and reiterating key tips and considerations to have when converting scientific research to lay language.

• Each room will have one moderator and at least one patient partner. Here, each group will exercise converting key aspects of the poster’s scientific methods sections into layman’s terms. This includes the introduction,
  hypothesis and objectives, methodologies, results, conclusions and future
  directions.
• Patient partners will offer feedback to the students about their scientific translation to lay language and possible suggestions/considerations to optimise that translation.
• This exercise will help trainees prepare for the in-person flash talk presentation and poster presentation.

Speaker: Linda Niksic (Patient Partner, Researcher, Educator, Infrastructure Developer)

• Topic: The Patient’s Perspective in Science: Why Understanding Matters
• Details: Linda will share her journey as a patient partner and how collaboration with researchers has impacted her experience and outcomes. She will also discuss the importance of plain language scientific communication in research for patients and patient-partner communities. Linda will share what drives her to be a patient partner and why it’s important for her to be a part of this workshop. Moreover, she will discuss the use of metaphors to simplify and breakdown complex concepts for easier understanding.
• Q&A session: After the keynote, attendees will be encouraged to reflect on the talk and ask pertinent questions

About Linda Niksic:

Linda Niksic is dedicated to improving the lives of individuals and building capacity in organizations, to be purposeful, inclusive by design, user centric and high performing.  With over 20 years of experience in federal public service and in non-profit, municipal government, private and academic sectors, Linda’s leadership and experience living with muscular dystrophy, has led to sustainable results improving our community.  This includes public relations work to help save Ottawa’s historic Aberdeen Pavilion from demolition, to leading a Youth Safety Audit in Ottawa’s Chinatown where young women requested a bus stop relocation from in front of a pool hall, to in front of a drug store, where they would feel safer waiting for their bus.  Linda was also listed by the principal of Ottawa’s St. Anthony’s School at its 100-year celebration as one of the people who made a difference for St. Anthony School, 15 years after she worked at the school as a Community Developer.  Linda has also interviewed Canadians across Canada who are homeless, living on the streets or living in overcrowded and unsafe conditions, and she has used their stories and insights to further policy development, research, and evaluation in the federal government.

Details: Closing remarks summarizing the key learnings of the day and encouraging ongoing collaboration between patient partners and researchers. Students will be reminded that they will receive a Certificate of Completion after the virtual event.