Category Archives: Patient Engagement

by | October 19, 2022 · 2:52 pm

IMHA’s Patient Engagement Research Ambassadors’ Journey to Developing “A How-to-Guide to Patient Engagement in Research”

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 the materials for this priority. This is the story of how PERA did so.

 

Patient partners identified a patient engagement in research gap and set a work priority

Over the summer of 2020, PERA members got to know each other and members of the IMHA team, met monthly with each meeting’s agenda including a combination of information sharing, capacity building (about research, IMHA and CIHR and patient engagement in research), and discussions about experiences in patient engagement. Invited guest speakers from the IMHA community included a researcher and a trainee who spoke about different topics, provided their perspectives, and participated in conversations with PERA.

During these meetings, a ‘parking lot’ was built and by the fall, a list of priorities emerged. The group agreed that its main priority was to fill the gap for practical tools and resources to help people do patient engagement (PE) in research and to advance patient engagement in research. IMHA provided consultant funding, honoraria, and staff time.

 

Patient partners drove the work – with their lived experience

Over the course of the next two years, each monthly PERA meeting included a discussion about what these PE in research resources would look like, what topics would be covered, and what information was most appropriate for different audiences.

All PERA members played an integral role in informing the work based on their own experiences as people living with a variety of conditions and who have had different experiences with research and research studies. The discussion around modules allowed PERA members to recognize and hold space for the ways in which patients are often ignored or tokenized in research settings. The group developed clear criteria for the PE resources that it would create. Material would be encouraging in tone, accessible, offered free of charge, available in English and French, and importantly, based on their own experiences. One PERA member drove the work between PERA meetings and made sure the momentum continued between the meetings.

 

The results: Democratizing PE in research training

The result of PERA’s work is IMHA’s “A How-to-Guide to Patient Engagement in Research” – a set of four modules, designed for anyone who is involved in patient engagement in research. The modules are:

  • Module 1: What is patient engagement?
  • Module 2: The research process: (a) Understanding the research process (for patient partners) and (b) Supporting patient partners throughout the research process (for other members of the research team)
  • Module 3: Setting up a research project for successful partnership
  • Module 4: Patient engagement for research teams: (a) Being on a research team (for patient partners) and (b) Engaging patient partners on a research team (for other members of the research team).

The course has been designed to be accessible, free, and taken at a pace that works for individual learners. Further the course is available in English and French and is not specific to arthritis, so that anyone in any research area can learn from it.

 

Next steps: take the course, spread the word

If you are a patient partner, researcher, trainee, or other member of a research team, these free, short modules are designed to provide new insights to your work in patient engagement in research and they will save you reinventing the wheel when you build capacity in the field of patient engagement.

This is the link to register for the learning management system and to take the course. We hope you will take the course, find it worthwhile, and then tell others about it and what you have learned from it. Our goal is to have patient engagement in research done well, so that we can ultimately develop better research outcomes that benefit all Canadians.

Also, you can check out IMHA’s Patient Engagement webpage for more information:  https://cihr-irsc.gc.ca/e/27297.html#a2

 

A special thank you to the PERA members who contributed to this piece: Dawn P Richards, Christine Thomas, and Gillian Newman (with thanks to Linda Hunter and Trudy Flynn for reviewing, and Karim Khan for editorial support).

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by | 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.

 

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by | October 27, 2021 · 5:13 pm

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.

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by | October 13, 2021 · 11:12 am

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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by | August 10, 2021 · 11:04 am

Co-creating through Social Media Crowdsourcing

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 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.

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