Category Archives: Patient Engagement

by karim miran-khan | May 25, 2022 · 10:12 am

Time of day and chronic pain – how they are connected and why we should care

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 pain severity, some people experience constant pain all day while others experience pain that changes throughout the day. This could mean fluctuations from day to day or fluctuations within the day. For example, some people may feel more pain in the morning than in the evening, while others have more pain in the winter than in summer.

It has been proposed that these fluctuations are linked to our 24-hour circadian rhythms (our sleep-wake cycles). These circadian rhythms influence a lot of what happens in our bodies, especially when it comes to the function of nervous tissue and immune cells. The nervous and immune systems are vital to our experience of pain, which is why understanding how these pain fluctuations occur is so important.

A team made up of researchers from Queen’s University, Kingston Health Sciences Centre, and the Université de Montréal is working together to dive a bit deeper into the relationship between the circadian system and chronic pain and find out why rhythmic pain fluctuations occur. For this project to be successful, the team needs as many people as possible to take part in the study.

The study is now recruiting participants and can be accessed at www.circaain.ca. It consists of two parts: the first is an online survey to understand study participants’ pain experience and daily habits (e.g., sleep/wake, coffee intake, etc.). Travel history and geographic location will also help the team learn whether daylight hours might play a role in pain. In the second part of the study, participants complete a 7-day electronic diary that collects data on their pain, mood, and other factors at three time points per day (8am, 2pm, and 8pm).

The CircaPain team hopes that the data collected in this study will provide individuals with a better understanding of their own pain, and in the process shed new light on how day/night changes might contribute to chronic pain. “We have the potential here to change how we think about pain, and spur the development of new personalized treatments across pain conditions,” said study lead investigator Dr. Nader Ghasemlou, an associate professor at Queen’s University.

Do you have questions about the study or want to learn more about the circadian control of chronic pain? Check out www.circapain.ca or email us at mydailypain@ghasemloulab.ca.

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Support for this research is provided by the Canadian Chronic Pain Network, part of the Canadian Institutes of Health Research-Strategy for Patient Oriented Research program.

What do Canadian Pain Research Trainees Know about Patient Engagement? Partnering with people who live with pain to find out.

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 implementation, and recommendations may help to improve how PE is done by pain research trainees.

We’re using this blog to describe our experiences as a diverse group of researchers (e.g., patient partners, trainees, and faculty members) who came together to better understand the current state of PE amongst pain research trainees in Canada. The idea for this work came about after several informal discussions between a group of trainees conducting pain research who had various degrees of exposure to PE in research. Following these discussions, we decided to conduct an online survey (in French and English) to understand more. With the support of the PE Committee of the Chronic Pain Network, we secured funds to support the operating costs of this work. In keeping with the overarching principles of PE, patient partners were involved throughout this work, from study conceptualization to survey development, survey dissemination, analysis, and knowledge sharing. To facilitate deep and rich PE, we found that from a process perspective, using a combination of meetings specifically with patient partners as well as our entire research team was helpful.

In the end, our survey consisted of 20 questions, including a combination of closed- and open-ended questions. We shared our survey through targeted emails and broadly through social media (e.g., Twitter posts). Our final analysis included 115 survey responses (105 English; 10 French). Among our respondents, 89.6% (103/115) reported that PE is ‘very’ or ‘extremely’ important. Despite this, 58.6% (65/111) reported that they ‘never’ or ‘rarely’ implement PE in research when they are the primary researcher (e.g., their thesis research).

When respondents were asked to provide recommendations for implementing PE amongst pain research trainees, they provided diverse responses. Using qualitative content analysis, we identified four key recommendations. They are to:

1) Improve availability and accessibility of training opportunities and resources on PE in research,

2) Provide more funding opportunities that support and/or require PE in research,

3) Create systems to support trainees to find patient partners, and

4) Ensure that supervisors, departments, and institutions support and encourage PE in research.

From this work, we have learned that although most pain research trainees in Canada see value in PE, many are not implementing it in their own research. Our hope is to build a community of pain research trainees and patient partners who can work together to co-design and implement patient-oriented research projects across the research continuum. We hope to create practical resources and solutions (e.g., tools, toolkits, simple guides, apps) so that pain research trainees can work collaboratively and effectively with patient partners.

Tokenism: Seeing it. Fixing it. Perspectives from IMHA Patient Partners

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 can learn from our experiences and hopefully avoid these situations altogether. We’ve put together some of our own experiences, along with some potential solutions for both patient partners and other members of the research team to help mitigate these situations. Keep in mind that patient engagement is still relatively new to research teams, so these situations may not be intentional and we would encourage you to give the research team the benefit of the doubt.

Download .pdf: Tokenism Seeing It Fixing It Scenarios

These are a few examples of tokenism that we’ve come across as patient partners. It’s our experience that members of research teams don’t mean to be tokenistic or don’t know how to address these issues. As patient partners we’ve often found ways to work with the research team to find solutions that work for everyone. We try to keep in mind that people often mean well when they engage patient partners on their teams, and unless they’re told that something isn’t working well, chances are they won’t be aware of it otherwise. This all being said, if you’ve tried your best to find potential solutions and things simply are not working out for you, it is ok to leave a research team – you should not feel pressured to do otherwise. We hope sharing these scenarios will help you in your own work and prevent some of these situations from occurring.

Listen to the Pain BC: Pain Waves podcast episode Tokenism in Patient Engagement, with guest speaker Dr. Dawn Richards for additional insights and advice on how to overcome it.

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Filed under Patient Engagement

Tagged as Patient Engagement, Patient Partners, Research Teams, Tokenism

by vicky earle | August 10, 2021 · 11:04 am

Co-creating through Social Media Crowdsourcing / La cocréation et les réseaux sociaux font bon ménage

Developing an infographic with and for patient partners about conference abstracts

by Dr. Dawn Richards

Le français suit / French follows

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 to submit abstracts for consideration to the conference, but how can you do that if you don’t even know what an abstract is? What happened was an organic process:

I put out an initial call on Twitter from @TO_dpr, and asked patient partners to let me know if a resource or tool helping people know more about what abstracts are would be helpful. The overwhelming response was ‘yes.’
Next, I drafted some text that described what an abstract is, what it’s used for and what the parts of an abstract are. My goal was to help demystify abstracts.
Back on Twitter again, I followed up my original tweet and asked people to comment on the text for me via Google Forms, so that we could ultimately create something that was useful to patient partners. Through Google Forms I collected responses from 17 individuals, and incorporated their feedback into the text about abstracts.
From there, my communications colleague helped to put the text into an infographic that made everything feel simple and uncluttered.
I circled back to everyone who provided me with input – to let them know how they contributed, and where they can find the infographic, and if they wanted to be thanked, they are acknowledged on the infographic itself.

View the full Infographic in English here: Infographic_Abstract Preparation for Conferences and in French: Infographic _ Abstract Preparation for Conferences _FR

Within a matter of weeks, we went from having an idea about a resource on conference abstracts to having an infographic about conference abstracts created with input from patients. Engaging patients to co-create resources doesn’t always need to be a large, formal project. Our little project shows the power of taking a fairly simple idea, crowdsourcing input from patients through social media, and then putting that input in to action to create an infographic that anyone can use. We hope knowing this helps you with any of your co-creation projects – from big to small.

Création d’une infographie en collaboration avec les patients partenaires sur la préparation d’un résumé en vue d’un congrès

Dre Dawn Richards

Les mondes de la recherche et de la science regorgent de processus et de protocoles que la plupart des experts tiennent pour acquis. Parmi ces éléments, on retrouve les résumés rédigés en vue d’un congrès. Si vous ne faisiez pas partie du monde de la recherche, comment décririez-vous ces résumés à une personne néophyte?

Durant la planification de l’édition 2022 de la Conférence canadienne de recherche sur l’arthrite (CCRA), le comité directeur a créé une nouvelle catégorie de résumés, soit ceux préparés et soumis par des patients. Le but était d’encourager davantage de patients à soumettre des résumés pour le congrès. Mais comment s’y prendre quand on ne sait pas ce qu’est un résumé exactement? Une fois la question posée, la réponse n’a pas tardé à venir de façon tout à fait naturelle :

J’ai d’abord lancé un appel à tous sur Twitter à partir du compte @TO_dpr pour demander aux patients partenaires si une ressource ou un outil expliquant ce qu’était un résumé leur serait utile. Ils ont presque unanimement répondu « oui ».
J’ai ensuite rédigé un texte décrivant le résumé, notamment son utilisation et les différents éléments qui le composent. Mon objectif était de démystifier les résumés.
De retour sur Twitter, j’ai donné suite à mon gazouillis initial en demandant aux gens de m’envoyer leurs commentaires sur mon texte dans un formulaire Google, pour que nous puissions proposer une ressource utile aux patients partenaires. Sur Google Formulaires, j’ai recueilli les commentaires de 17 personnes et les ai incorporés à mon texte.
Une personne avec laquelle je travaille qui s’y connaît en communication m’a ensuite aidée à convertir mon texte en une infographie présentant l’information de façon simple et épurée.
J’ai écrit à toutes les personnes qui m’avaient envoyé leurs commentaires pour leur dire comment elles avaient contribué et où elles pouvaient trouver l’infographie, et pour leur demander si elles souhaitaient que leur nom figure directement sur l’infographie en guise de remerciement.

Vous pouvez consulter l’infographie ici : Infographic – Abstract Preparation for Conferences (anglais) ou Infographie – Préparation d’un résumé pour un congrès _FR (français)

En quelques semaines, nous sommes donc passés d’une simple idée à une ressource bien concrète, créée en collaboration avec des patients. De toute évidence, la mobilisation des patients ne se limite pas aux gros projets officiels. Notre modeste projet montre l’efficacité d’une idée plutôt simple – recueillir les commentaires de patients au moyen des réseaux sociaux – pour créer une infographie accessible à tous. Nous espérons que cette histoire de réussite vous guidera dans vos propres projets de cocréation, quelle que soit leur taille.

Category Archives: Patient Engagement

Time of day and chronic pain – how they are connected and why we should care

What do Canadian Pain Research Trainees Know about Patient Engagement? Partnering with people who live with pain to find out.