EVENT

Steering Committee 2023

We are hugely grateful to the 2023 PxP Steering Committee for their significant guidance and expertise. All members of the Steering Committee identify as patient partners. PxP 2023 is supported by CIHR-IMHA.

This is a photo of Joletta Belton wearing a cap, smiling at the camera, with woods in the background.

Joletta Belton

Hey there, thanks for reading my bio. I'm Jo, a reader, writer, dog mom, and nature lover. I'm also a fierce advocate for the equitable inclusion of lived expertise in the work of pain. I got hurt many a moon ago working as a firefighter paramedic. It wasn’t much of anything at the time, then became life-altering and world upending. I was forced to medically retire from the career that had defined me and started down a path of trying to better understand pain and what to do about it. I’m still on that path. MyCuppaJo.substack.com is where I make sense of pain through science, stories, philosophy, and art through the lens of my own lived experiences of pain and trauma and struggling to find the right care. I'm also a partner in pain research, an author on peer-reviewed papers and textbook chapters, founding co-chair of IASP's Global Alliance of Partners for Pain Advocacy, and the first Patient & Public Partnerships editor at the Journal of Orthopaedic & Sports Physical Therapy.

Recommended Resources:

  1. Patients as Partners in Research: It's the Right Thing to Do
  2. Patients as Partners in Research: There Is Plenty of Help for Researchers
  3. Patient Compensation Tools
This photo shows Savia de Souza, smiling, in front of a neutral background.

Savia de Souza

Dr Savia de Souza has lived with rheumatoid arthritis for over a decade, which resulted in early retirement from her previous practice as a dentist. Since 2013 she has been an involved patient across a range of rheumatology projects both in the UK and internationally, and has published and presented her own patient-led research. She is keen to highlight issues that patients feel warrant more attention from the medical profession, and to increase patient involvement in research and health service design & delivery.

Recommended Resources: 

    1. Patient partner compensation in research and health care: the patient perspective on why and how
    2. Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study
    3. Patient and public involvement in an international rheumatology translational research project: an evaluation
This is a headshot of Eileen Davidson taken against a neutral background.

Eileen Davidson

Eileen Davidson is a rheumatoid arthritis patient advocate, writer and speaker from Vancouver, BC. She is a regular writer for Creaky Joints, an ambassador with The Arthritis Society and patient advisory board member (APAB) with Arthritis Research Canada among many more. Healthline, Everyday Health and Health Central have called her blog and social media channels one of the best in the arthritis community to follow. For a professional or panel event, Eileen Davidson's extensive knowledge and experience in the arthritis community make her an excellent resource and advocate. As a speaker, she brings a unique perspective and personal story that can inspire, educate and engage. As a writer, she is a skilled communicator and can provide valuable insights and information on the topic of arthritis advocacy.

Recommended Resources: 

    1. Course: A How-to Guide for Patient Engagement in Research
    2. Patient Engagement in Research Scale
    3. The Pathway of Patient Engagement in Rheumatology Research
This is a photo of Trudy Flynn, smiling and holding a small dog. There is a waterfall and rocks in the background.

Trudy Flynn

Trudy Flynn is a medically retired Nurse from Nova Scotia. She was diagnosed with Fibromyalgia over 31 years ago. She controls her Fibromyalgia with exercise, is a long distance runner and follows the slow but steady mantra. Trudy started being involved in research as part of a Clinical Trial in 2009 through the Nova Scotia Pain Clinic, which led to her first experience with actual Patient Engagement in 2014 as part of the steering committee for the CIHR - James Lind Alliance Adult Fibromyalgia Priority Setting Partnership. Trudy was a Patient Representative at the Canadian Pain Summit in Toronto in September, 2014 and it was at this Summit, listening to Researchers that Trudy realized how important Knowledge Translation and Patient Engagement were to making research relevant to the community the research is supposed to serve. As a result of this realization Trudy became a Research Ambassador for CIHR – IMHA and later a Patient Engagement Research Ambassador (PERA).

In 2017, Trudy coauthored a paper published in the Canadian Journal of Pain, called “A paradigm change to inform Fibromyalgia research priorities by engaging patients and health care professions”. In 2018 Trudy wrote about her James Lind experience in an article titled “The James Lind Alliance: Identifying the Top 10 Canadian Research Priorities for Fibromyalgia - a Patients Perspective” for the CIHR website. In 2019 Trudy was a key contributor for the Fibromyalgia Section of the IMHA Online Resource Library.

In 2019 Trudy joined the Maritime SPOR Support Unit (MSSU) to help promote and participate in Patient Engagement in the Maritime Provinces, where she is currently the Co-Chair of the Patient Public Partner Council and serves on many MSSU committees.

In 2021 Trudy helped establish Fibromyalgia Association Canada (FAC), a nationwide organization led by people with fibromyalgia for people with fibromyalgia. Trudy is currently the Chair of the Board of Directors at FAC.

Recommended Resources: 

  1. Health Research BC
  2. Patient Advisors Network
  3. Alberta SPOR SUPPORT Unit (AbSPORU)
A white nonbinary person (Alex Haagarrd) with short blond hair looking off to the side and smiling slightly. They are wearing eyeglasses with round, black plastic frames, dark red lipstick and four silver hoop earrings in progressively smaller sizes.

Alex Haagaard

Alex Haagaard is a design researcher who specializes in disability-inclusive UX and digital service design. They earned their Master of Design from OCAD University in Toronto, studying knowledge gathering practices of emergency medical professionals for the purposes of healthcare information design. During this time, they also increasingly struggled with what one doctor derisively described as “a myriad of nonspecific symptoms,” which made publishing and networking as an early career researcher challenging. In 2016, they began to work full-time pursuing a diagnosis and medical care, an experience which they describe as the “world's worst paying, least prestigious design research fellowship.” After two years of fighting to access care, they realized that if they wanted effective treatment, they would have to make it themselves. Researching the neurophysiology of histamine and identifying novel plant-based compounds, they successfully produced their own sleep cycle in 2018.

Since then, they have been working with companies to develop and advocate for accessible design processes, including neglected modes of accessibility experienced by people with chronic pain and illness. They also work as a patient advocate and currently co-chair the Chronic Pain Network's Knowledge Mobilization and Implementation Science committee.

Recommended Resources: 

  1. Being-in-the-Room Privilege: Elite Capture and Epistemic Deference

  2. The disappearance of the sick-man from medical cosmology, 1770–1870

  3. The sick-person rejects their disappearance
This photo shows Linda Hunter looking slightly to the left of the picture and smiling, taken against a neutral background.

Linda Hunter

Linda Hunter is a retired executive health care leader and nurse who has worked locally, nationally, and internationally in healthcare over the last 35 years. Linda has worked with seniors in three long term care homes in Ontario – including two rural homes. She has spinal stenosis, osteoarthritis, fibromyalgia, and severe degenerative disc disease and has lived with chronic pain for over 15 years.  Linda is a CIHR Patient Engagement Research Ambassador (PERA) for the Institute of Musculoskeletal Health and Arthritis with the Canadian Health Research Institutes (CIHR) and is a member of the Institute’s Advisory Board. She co-developed online educational modules for patients and researchers about Patient Engagement in Research – available through CIHR-IMHA. Linda also is a Board member of the Canadian Arthritis Patient Alliance (CAPA) and is a member of the Fibromyalgia Association of Canada’s Research and Education Committees.

Linda is an Essential Caregiver to her Mum, who lives with dementia, and is an executive member of the Friends and Family Council at her Mum’s LTC Home.

Linda states: “It is vital that the patient voice is respected, listened to, and incorporated into change in the delivery of health care services, including research. Patients are experts about their disease and the lived experience. They are becoming more informed and knowledgeable, and it is imperative that they are included in the development of plans of what is researched.” Linda is a Patient Co-Investigator for the Clinical Trails Training Platform research grant funded by CIHR called CanTrain and is the national Co-Chair of the Patient, Family and Community Member Working Group.

Recommended Resources: 

Course: A How-to Guide for Patient Engagement in Research

This photo shows Amy Price looking at the camera against a blurred background of an archway.

Amy Price

Dr. Amy Price worked as a Neurocognitive Rehabilitation consultant and in International Missions before sustaining serious injury and years of rehabilitation. She emerged with a goal to build a bridge between research methodology, research involvement and public engagement where the public is trained and empowered to be equal partners in health research. Amy’s experience has shown her that shared knowledge, interdisciplinary collaboration and evidence-based research will shape and develop the future. She serves as a BMJ Research Editor (Patient and Public Partnership) and is a Senior Research Scientist at Stanford School of Medicine.

Recommended Resources: 

Medical Education and Research Involvement with Patient and Public Partners

This photo shows Sara Riggare looking at the camera with a blurred background showing trees and snow.

Sara Riggare

Sara Riggare (MSc, PhD) is a patient leader and patient researcher at Uppsala University in Sweden. She has made it her mission to bring patients, researchers, healthcare, industry, and policymakers closer together to improve health for all. Sara has been living with Parkinson’s disease for over 35 years and her research is focused on personal science, self-tracking, Quantified Self, and patient-led research. Sara develops models for selfcare in chronic disease based on her own experiences from managing Parkinson’s disease.

Recommended Resources: 

  1. My 5 top learnings from tracking my Parkinson for over a decade
  2. Collection of links to the work of Marina Noordegraaf
  3. The Promise of Patient-Led Research Integration into Clinical Registries and Research
  4. Patient-Led Research Scorecards
  5. A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research
This photo shows Janice Tufte looking at the camera, against an off-white background.

Janice Tufte

Janice Tufte resides in Seattle, Washington USA and is active as a patient partner in health systems research and quality improvement efforts around the globe. Janice developed local Emergency Muslim Resource Guides two decades ago and today carries forward current resource knowledge around the social drivers of health and how they can impact complex care while addressing disparities in the delivery of whole person care. Janice serves on multiple technical expert panels, committees, and workgroups sharing the importance of equitable and collaborative inclusion in study design, conduct, implementation, and dissemination. More here: www.janicetufte.com

Recommended Resources: 

  1. Patient Engagement Tool Kit
  2. Culturally responsive health research: A collaborative design model for equitable and sustainable community impact
  3. Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation
This photo shows Dawn Richards looking at the camera against a charcoal grey background.

Dawn Richards

Consultant, IMHA Patient Engagement in Research Strategy

Dawn Richards, PhD, lives with rheumatoid arthritis and osteoarthritis. At Five02 Labs Inc., her work combines her analytical chemistry training and her passion to ensure patients inform research and healthcare. She helps people and organizations design and execute their patient engagement initiatives using leading practices and tailoring their approaches to meet their goals and patient partners' needs. She has contributed to the literature and practice in patient engagement on compensation, authorship, recognizing patients as people with skills and who lead fulfilling lives, and training on patient engagement in research. As a volunteer, Dawn is Vice President of the Canadian Arthritis Patient Alliance, has been invited to and is involved in a number of People Living with Arthritis/Rheumatism in Europe (PARE, of the European Alliance of Associations for Rheumatology) activities, and was the first Patient Advisor of the Canadian Medical Association’s Wait Time Alliance.

Recommended Resources: 

  1. Course: A How-to Guide for Patient Engagement in Research
  2. Patient partner compensation in research and health care: the patient perspective on why and how
  3. Reflections on patient engagement by patient partners: how it can go wrong
  4. Rosamund Snow: What makes a real patient?

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