Le français suit / French follows By: Joletta Belton One of the things I really enjoyed during the course of the PxP: Partnering to Make Research Stronger conference was the lively Zoom chat discussions that took place during the presentations. To see these chats for yourself, they have been summarized and anonymized and are available on the PxP Resource Hub. There were also great questions asked in the Q&A, yet there wasn’t always time for those questions to be answered in depth. I particularly liked this question: “what is one thing you would like see changed after PxP?” The answer ..read more

Le français suit / French follows By: Anna Samson, Patient Engagement in Research Ambassador for CIHR-IMHA This past month, IMHA sent two representatives—Anna Samson, a Patient Engagement Research Ambassador, and Eunice Lui, the Projects and Initiatives Analyst at IMHA—to attend the Institute of Human Development, Child and Youth Health’s (IHDCYH) Healthy Youth Summit that was co-developed and co-led by IHDCYH’s Youth Advisory Council. This conference brought successful Healthy Youth Catalyst grant recipients and their Youth Voice Representatives, youth, funding partners, policy and decision-m ..read more

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Le français suit / French follows by: Dawn P. Richards (patient partner and Five02 Labs Inc, Toronto, Ontario, Canada) and Jim Elliott (independent advocate for patients in research, Wales, UK) As more research teams include patient and public authors in their work, the topic of affiliation for these authors is coming to light. The academic publishing model is one which assumes that most, if not all, authors have an academic, health services or industry-based affiliation, however patient and public authors do not necessarily fit this mold. Given that research is bringing to light journal Edito ..read more

By: Laurie Proulx, Nadine Lalonde, Anna Samson, Linda Roy, Julie McKenna CIHR-IMHA thanks our guest authors for sharing their time and experience in writing this pertinent case study. The lived experiences of patients are part of the fabric of the Canadian Arthritis Patient Alliance (CAPA). CAPA has over a decade of involvement as patient partners in research, and is a grassroots, patient driven and managed organization. The board is made up of people with arthritis who set the strategic direction and manage day to day operations. Many in CAPA’s community, including founder Ann Qualman who liv ..read more

In May 2020, IMHA convened its Patient Engagement Research Ambassadors (PERA) with a mandate to: inform IMHA and CIHR of patient priorities in research; inform their own communities about IMHA, CIHR and work with PERA; advocate to benchmark best practice in patient-oriented research (POR) across IMHA’s activities; curate quality POR assets for IMHA and the CIHR community; create new POR assets; and evaluate the progress of PERA. PERA quickly established a collegial approach and monthly meetings. Over that summer, the group defined its main priority and then over the next two years, developed t ..read more

A cross-Canada research team has launched the CircaPain project to learn why chronic pain might fluctuate throughout the day Everyone feels pain differently, and most research studies have worked to understand where, why, and how it happens. However, there is little data available on when pain happens. The new CircaPain study is seeking help from Canadians living with chronic pain to better understand changes in their pain throughout the course of each day. Pain fluctuations, or lack thereof, could be related to the type of pain condition, sleep habits, or even where people live. Regardless of ..read more

Authors: Therese Lane, Dawn Richards & Kyle Vader Patient engagement (PE) in research is defined as “meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation.” Despite recognition of the value of PE in pain research (e.g., funding of the CIHR-funded Strategy for Patient-Oriented Research (SPOR) Chronic Pain Network), little research has been published on the implementation of PE by certain groups, such as pain research trainees. A better understanding of current perspectives and experiences, perceived barriers/facilitators to ..read more

Authors:  Dawn Richards, Eileen Davidson, Trudy Flynn, Linda Hunter, Gillian Newman, Christine Thomas “Tokenism” When you read that word, what does it mean to you? According to CIHR’s “Ethics Guidance for Developing Partnerships with Patients and Researchers” tokenism in research is defined as: “… when researchers include a patient voice in their project, but mostly ignore it.” And unfortunately for patient partners on research teams, many of us have been there and felt tokenism, even if we didn’t know what to call it at the time. We want this to be a helpful post about tokenism so others ..read more

Developing an infographic with and for patient partners about conference abstracts by Dr. Dawn Richards The research and scientific worlds are full of processes and protocols that most people in these worlds take for granted. One of these items is the conference abstract. If you’re not in the research world, how would you describe a conference abstract to someone outside of research? In planning for the Canadian Arthritis Research Conference 2022 (CARC), the Steering Committee created a new category of abstracts, those prepared and submitted by patients. The idea is to encourage more patients ..read more