Tag Archives: Arthritis

Case Study: Expanding and supporting the patient partner community in research

By: Laurie Proulx, Nadine Lalonde, Anna Samson, Linda Roy, Julie McKenna

Le français suit / French follows

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 lived with Rheumatoid Arthritis, were instrumental in creating the Canadian Arthritis Network. This research network made patient partnership central to its mandate and operations over a decade before the Canadian Institutes of Health Research Strategy for Patient-Oriented Research was established.

CAPA’s board recently identified a need to broaden and diversify the community of patient partners that contribute to health research. Board members receive many requests to be part of research teams, know they can’t represent all patient perspectives in research, and are unable to keep up with the demand.

The Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA) provided support for CAPA’s efforts to expand and support the community of patient partners in research through a new training and mentoring program. This new program provided skill development and mentorship from experienced patient partners, giving new patient partners a solid foundation of knowledge about the health research process and lots of opportunities to become engaged in research. As experienced patient research partners, we know how it can be overwhelming to be added to a research team without some support.

Not only is my lived experience with cchronic pain valid but it could also be beneficial to others. - Anna Samson

New patient partners ready to join research teams

To launch this new training and mentoring program, CAPA hosted an open call shared on Twitter, Instagram, Facebook and newsletters for people with lived experience of arthritis who may wish to get involved in health research projects and teams. With great response, six individuals were invited to be part of this new cohort of patient research partners. This free online program, co-developed by CIHR-IMHA and patient partners, introduces patient engagement in research, the research process, successful partnership and being part of a research team. This provided a formal training program, complemented by an on-line community where new resources are posted, opportunities for involvement are shared, and peer support is provided.

To date, members of the new group have completed grant peer review for the Arthritis Health Professions Association and have been matched to research projects with established researchers and trainees about COVID-19 vaccine immunity, sexual and reproductive health, and osteoarthritis.

The experience has been positive for the patient research partners. Anna Samson recently shared on social mediaThe biggest thing I learned from this is that my lived experience is importantBut this affirmed for me that not only is my lived experience with chronic pain valid but it could also be beneficial to others.”

You can learn more about the new members ‘graduating’ from this program on the CAPA  website. The patient research partners have a variety of lived experiences, expertise, and interests to offer to research teams. You can get in touch with them by emailing our organization. This new group is eager, motivated, and ready to be matched to new and ongoing research projects, CIHR grant proposals, and other health research activities like peer review. Looking ahead with our larger community of patient partners, we hope to make patient engagement meaningful for researchers and patient partners.


Étude de cas : élargir et soutenir la communauté de patients partenaires en recherche

L’IALA des IRSC remercie les personnes qui ont pris le temps de témoigner de leur expérience en rédigeant cette étude de cas fort à propos.

Le vécu des patients forme la trame de l’Alliance canadienne des arthritiques (en anglais seulement) (ACA), organisme citoyen qui s’implique depuis plus de dix ans dans la recherche. L’ACA est dirigé par les patients, pour les patients : son conseil d’administration est formé de personnes atteintes d’arthrite qui établissent l’orientation stratégique de l’organisme et en gèrent les activités quotidiennes. De nombreux membres de la communauté de l’ACA, comme la fondatrice Ann Qualman qui était atteinte de polyarthrite rhumatoïde, ont joué un rôle déterminant dans la création du Réseau canadien de l’arthrite. Ce réseau de recherche a placé le partenariat avec le patient au cœur de son mandat et de ses activités plus de dix ans avant la mise en place de la Stratégie de recherche axée sur le patient des Instituts de recherche en santé du Canada.

Le conseil d’administration de l’ACA a récemment reconnu la nécessité d’élargir et de diversifier la communauté de patients partenaires qui contribuent à la recherche en santé. En effet, les membres du conseil sont bien conscients qu’il est impossible pour eux de faire résonner les voix de tous les patients dans la recherche; d’ailleurs, ils reçoivent de nombreuses demandes d’intégration à des équipes de recherche, mais ils ne sont pas en mesure de répondre à la demande.

L’Institut de l’appareil locomoteur et de l’arthrite des Instituts de recherche en santé du Canada (IALA des IRSC) a appuyé les efforts de l’ACA à cet égard en mettant en œuvre un nouveau programme de formation et de mentorat qui permet aux patients partenaires d’expérience de transmettre leur savoir et de conseiller les novices. Résultat : les nouvelles recrues ont une meilleure idée du processus de recherche en santé et se voient offrir de nombreuses occasions de participer à la recherche. En tant que patients partenaires chevronnés, nous savons qu’il peut être très difficile de s’intégrer à une équipe de recherche sans soutien.

« Mon expérience de la douleur chronique est non seulement pertinente, mais elle pourrait également se révéler bénéfique pour d’autres personnes. » Anna Samson

De nouveaux patients partenaires fin prêts à se joindre à des équipes de recherche

Pour promouvoir ce nouveau programme de formation et de mentorat, l’ACA a publié une demande de participation ouverte (en anglais seulement) sur Twitter, Instagram, Facebook et dans des bulletins afin de trouver des personnes touchées par l’arthrite qui s’intéressent à la recherche en santé et souhaiteraient éventuellement faire partie d’une équipe de recherche. Les intéressés se sont manifestés en grand nombre, et six personnes (en anglais seulement) ont été invitées à former une nouvelle cohorte de patients partenaires. Ce programme en ligne gratuit, élaboré conjointement par l’IALA des IRSC et des patients partenaires, présente les principes de la mobilisation des patients dans la recherche, le processus de recherche, les caractéristiques d’un partenariat fructueux et l’intégration d’un patient dans une équipe de recherche. À cette formation structurée s’est ajoutée une communauté en ligne permettant la publication de nouvelles ressources, la promotion d’occasions de participation à la recherche et le soutien par les pairs.

Les membres de la cohorte ont déjà mis leurs nouvelles connaissances au service de l’évaluation par les pairs des demandes de subvention présentées à l’Arthritis Health Professions Association et ont été jumelés à des chercheurs établis et à des stagiaires dans le cadre de projets sur l’immunité vaccinale contre la COVID-19, la santé sexuelle et reproductive, et l’arthrose.

Les patients partenaires ont bien aimé leur expérience, comme en témoigne un message publié sur les médias sociaux (en anglais seulement) par Anna Samson, dont en voici un extrait traduit : « Ce que je retiens surtout, c’est que mon vécu est important. […] Mon expérience de la douleur chronique est non seulement pertinente, mais elle pourrait également se révéler bénéfique pour d’autres personnes. »

Rendez-vous sur le site Web (en anglais seulement) de l’ACA pour en savoir plus sur les personnes qui ont suivi ce programme. Les patients partenaires sont des atouts précieux pour la recherche en raison de la grande variété d’expériences, de connaissances et d’intérêts qui les animent. Pour communiquer avec eux, n’hésitez pas à envoyer un courriel à notre organisme. Ce nouveau groupe est enthousiaste, motivé et prêt à s’associer à des projets de recherche nouveaux et existants, à des demandes de subvention destinées aux IRSC et à d’autres activités de recherche en santé comme l’évaluation par les pairs. Nous espérons que cette communauté élargie de patients partenaires permettra à la mobilisation des patients de gagner ses lettres de noblesse auprès des chercheurs et des patients partenaires.

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Clinical Biomechanics – interplay between pain and gait biomechanics

Join the Canadian Musculoskeletal (MSK) Rehabilitation Research Network for the GaitNET-Osteoarthritis Canada Seminar Series (Nov 30th)

Date: Tuesday, November 30, 2021  |  Time: 12:00-2:00pm (EST) via Zoom Free, but pre-registration is required. 

This exciting seminar series focuses on research priorities in gait biomechanics research. We aim to stimulate discussion among researchers, trainees and clinicians to increase collaboration, build links between biomechanics labs and discuss priorities and opportunities in the field.

Building on the successful Biomechanics & Osteoarthritis Symposium held in May, 2021 (listen to the recorded session here), this November 30th webinar focuses on clinical biomechanics research relating to pain and gait biomechanics.

Leading experts Drs. Monica Maly, Katherine Boyer, Tuhina Neogi, Lisa Carlesso, and Tim Wideman will share advances in pain science including mechanisms of pain generation and perception, as well as how altered gait biomechanics may influence pain. They will discuss key concepts to consider when conducting clinical biomechanics research that includes both pain and biomechanical outcomes.

Speaker information:

Dr. Katherine Boyer (Associate Professor, University of Massachusetts Amherst)

Dr. Boyer’s researchers lower extremity mechanics during locomotion and the mechanisms for adaptations in ambulatory mechanics in aging, with overuse injury and in response to mechanical and pharmacological interventions. She uses a stimulus-response experimental model to probe the interaction between gait mechanics, neuromuscular function, systemic biological marker and joint injury and degeneration.

Dr. Monica Maly (Associate Professor, University of Waterloo)

Dr. Maly’s research program focuses on developing biomechanically-sound physical activity guidelines for adults with the most common forms of arthritis that are associated with aging. Promoting physical activity is paramount to the well-being of Canadian adults as they age – exercise provides as much pain relief for arthritic pain as drugs, while also reducing the risk for co-morbidities including cardiovascular disease and cancer. However, excessive physical activity, due to work or recreation, can promote joint damage. Canadians with arthritis have no guidance on the amount, type or intensity of physical activity that damages joints. She uses biomechanical methods to evaluate the impact of physical activity on joint health, with an aim to develop guidelines for physical activity that promote health and productivity, while minimizing the risk for arthritis progression.

Dr. Tuhina Neogi (Professor, Boston University)

Dr. Neogi is a rheumatologist and epidemiologist who researches knee osteoarthritis and gout, pain mechanisms in knee osteoarthritis, as well as methods issues in rheumatic diseases. She has held peer-reviewed foundation and NIH funding since 2003, with >250 peer-reviewed publications.

Dr. Neogi is a past chair of the FDA Arthritis Advisory Committee, has served on the boards of two international societies: Osteoarthritis Research Society International (OARSI) and Gout, Hyperuricemia, and Crystal-Associated Diseases Network (G-CAN), and on committees for the American College of Rheumatology (ACR) and International Association for the Study Pain (IASP).

Dr. Lisa Carlesso (Assistant Professor, McMaster University)

Lisa Carlesso is a licensed physiotherapist and an assistant professor in the School of Rehabilitation Science at McMaster University. Her extensive academic background in physical therapy and clinical epidemiology have shaped her research interests in common age-related musculoskeletal problems. Dr. Carlesso’s most recent studies focus on improving treatment and outcomes for people with musculoskeletal disorders, such as knee osteoarthritis and chronic low back pain and is interested in understanding the mechanisms and consequences of pain as they relate to disability, mobility, participation and healthy aging.

Dr. Michael Hunt (Professor, University of British Columbia)

Dr. Hunt’s research interests focus on identifying changes in movement patterns and biomechanics as a result of injury or disease. The Motion Analysis and Biofeedback Laboratory uses state-of-the-art real-time motion analysis techniques to analyze movement pattern differences between injured and healthy individuals. He then uses this information to develop targeted treatment approaches that aim to optimize function and/or prevent disease progression. His primary group of interest is individuals living with osteoarthritis (OA) of the knee. He has identified key gait deviations exhibited by those with OA that have the potential to alter the loading patterns at the knee – a known risk factor for disease progression. He has also studied the role of exercise and movement retraining on biomechanical (joint loading) and clinical (pain, function) disease characteristics. Dr. Hunt works closely with experts in rheumatology, physical therapy, orthopaedic surgery, and neuroscience.

Dr. Timothy Wideman (Associate Professor, McGill University)

The overarching goal of Dr. Wideman’s research is to improve care for people living with pain. He approaches this goal by advancing research related to the following three themes: Understanding and targeting biopsychosocial risk factors for prolonged pain and disability, Improving entry-level pain education for health professionals through large-scale knowledge translation initiatives, and Developing person-centred approaches to pain assessment and management that help validate and support people living with pain.

 

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Canadian Arthritis Research Conference: Jan 31 & Feb 7-8 2022.

“CARC” is not a household name. It’s not going to top Coke, Pfizer or Netflix for brand recognition. But if you are part of the broad (inclusive) arthritis research community CARC might be valuable for you. It’s the Canadian Arthritis Research Conference and 2022 marks the 3rd annual event.

February 7 and 8, 2022 [Keynotes & symposia]: Join us for 2 keynotes, 12 invited symposia, and 12 ‘Best of the Best’ research presentations by emerging scientists (clinicians can be scientists as you know). Those 12 research presentations will come from the call of abstracts competition, see below.

Monday, January 31, 2022 [aka “Training/Lifelong Learner Day”]: All conference research oral presentations and research posters will be presented on the “Research Presentation Day” Monday, January 31, 2022. The conference organisers are separating the research presentations from the February keynotes and symposia so that speakers are not competing against each other. January 31 will have laser-like focus on research abstracts (including systematic reviews, all types of original research, and evidence synthesis). There will be expert tips for younger scientists (which includes clinicians) and opportunities for break out groups. A true “training day”– and everyone is a life-long learner, correct?

Why attend CARC? Three reasons: 1) Networking opportunities! The conference provides all levels of trainees (clinical fellows and MSc/PhD/Postdoc) to present and engage with researchers, clinicians and other experts. 2) We will award a series of prizes for research abstracts relating to posters and presentations made for CARC. 3) We plan to provide keynotes and symposia presenters with honoraria to reflect their preparation and contribution to the conference.

Who should consider attending? The world of arthritis researchers, clinicians and trainees. This conference (and its predecessor, the CAN Network Meetings of the early 2000s) have traditionally been well attended by rehabilitation researchers, other clinicians, basic scientists and health systems researchers. Abstracts are welcome from the broad church of arthritis. Email us if you are not sure you fit (but you will!). imha-iala@cihr-irsc.gc.ca

Call to action! Please! Three of them! 

  1. Hold the 2022 dates: CARC Keynotes & symposia: February 7 & 8, 2022.
  2. Keep January 31, 2022 free to present your research abstract!
  3. Keep an eye on the CIHR-IMHA twitter account @CIHR_IMHA or this blog for how and when to submit abstracts, register for the conference and schedule details.

Final (somewhat innovative) point: Democracy strikes! 

We are inviting CARC keynote (individuals) and symposia (3-speaker panel) presentation suggestions from anyone. Literally anyone. The CARC Scientific Committee will evaluate the symposia submissions based on criteria such as importance of the research question, rigour of the methods, and research impact. This isn’t rare but many conference keynotes and symposia are appointed by the Scientific Committee. We are embracing a more communal approach via a crowdsourcing survey.

We (the Scientific Committee) are still working on the details of the criteria and we welcome your input! More to come on how to submit your suggestions!  For now, please note the dates, alert your colleagues, and look forward to 2022 with excitement.

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Canadian Rheumatology Association Position Statement on Virtual Care

Virtual care, also known as telemedicine, eHealth and mHealth, has become increasingly important during the COVID-19 global pandemic.

The Canadian Rheumatology Association (CRA) supports the delivery of high-quality care for patients, regardless of the mode of healthcare delivery. Since virtual care visits will continue after the COVID-19 pandemic has ended, the CRA is in an ideal position to identify opportunities where virtual care may improve care, and also establish best practices. In April, 2021 CRA released a Position Statement on Virtual Care.

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