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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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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CONSERVE 2021 Statement

The COVID-19 pandemic disrupted thousands of clinical trials involving hundreds of thousands of participants, and billions of dollars of scientific investment. Until very recently there were no guidelines, frameworks, or standards for clinical trials that are disrupted in extenuating circumstances (e.g. pandemic, natural disaster).

An international team of scientists, patient representatives, trial investigators, methodologists and statisticians, ethicists, funders, regulators, and journal editors convened to develop the CONSERVE (CONSORT and SPIRIT Extension for RCTs Revised in Extenuating Circumstances) Statement. CONSERVE is an extension to CONSORT and SPIRIT that guide on how to report on trials and trial protocols that face important modifications in extenuating circumstances such as the COVID-19 pandemic. CONSERVE was developed using a consensus process, a rapid review, and a survey of the international trials community.

To make CONSERVE easy to implement, the statement incorporates an implementation tool and checklists tailored to trial reports and trial protocols. The checklists include 4 sections capturing extenuating circumstances, important modifications, responsible parties, and interim data analyses. The aim is to transparently report which extenuating circumstances have led to important modifications in randomized trials and trial protocols.

The CONSERVE Statement was published in JAMA and is available at the EQUATOR Network website.

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by | September 14, 2021 · 9:53 am

IMHA Webinar Spotlight: Failure Can Fuel Your Success in Research

Professor Heemstra shared strategies for how researchers can deal with failure and how embracing failure can fuel success. It’s not uncommon for a typical researcher to accumulate thousands of failed results during a career. “Experiments fail every day. But as academics, we are never actually taught how to use this to our advantage.” Professor Heemstra saw this gap. Her lab co-founded a nationwide network called FLAMEnet—an education and psychology collaborative / research project—that investigates overcoming the fear of failure.

Being Afraid to Fail versus Being Comfortable with Failing

Challenges can be an opportunity for growth. Failure is inherent in what we do as researchers as not all experiments succeed and not every paper or grant submission gets accepted. How do we turn these “failures” into opportunities? How do we navigate self-doubt and “imposter syndrome”? And how can we become better as a result of these experiences?

Word cloud from live webinar poll

Results from the webinar audience poll answering the question: “What is an area of your life where you are afraid of failing?”

While researchers engage in research, their focus is typically on the actual research being done—and they often don’t consider other things that can impact the research process: how we think about our abilities; how we think about failure (and fear of failure); and what these things mean to us. All of these attitudes impact how we move through life and also how successful we are as researchers. Failure is painful and often unavoidable, but it can be a key step on the path to success. Leveraging failure toward success requires perseverance and resilience: the willingness to try again, to do things differently, and to do things more effectively. Moving from being totally terrified to a place of action starts by taking a step out of your comfort zone every single day.

Why should we help our students overcome their fear of failure? Why should we care? This raises questions:

  • How and when do we expect students to acquire these skills? Most courses / curriculums do not teach perseverance and resilience, yet we expect researchers to have these skills.
  • How can we help students in our courses cultivate these skills?
  • How can we be lifelong learners in cultivating these skills ourselves?

It can feel easier to push ahead despite possible failure when the things we are doing are for fun, in private or if the “stakes are low”. The stakes are much higher when we think about failing at work.

But if we avoid failing then we also:

  • Avoid setting up important experiments
  • Subtly sabotage experiments so we have an excuse when they don’t work
  • Avoid seeking out help and advice
  • Be more likely to discard the result go home instead of trying again.

There is a dichotomy: if we are open to the possibility of failure, it actually leads us to choices where we are less likely to fail. What can we do about this as researchers and educators? The answer is to change your mindset.

Fixed vs Growth Mindset

According to Carol Dweck, author of the book “Mindset”, a Fixed Mindset is static. It is defined as our belief that basic qualities such as intelligence and talent are traits that are set. That talent and intelligence alone create success. That you are born with a genetically set code for traits determining your skill level at certain things and are driven by the desire to appear intelligent. You are more likely to avoid situations where failure is possible, as a failure delivers unwelcome (and unfixable) feedback about your talent level. With a fixed mindset, you do not have a productive path forward after a failure occurs. Failure is considered to be a brick wall that cannot be overcome = a stopping point.

A Growth Mindset is active. It is the belief that we are all born with different levels of ability in a variety of areas. Intelligence and talent are just the starting point—you can develop your skills through hard work. Thus, hard work leads to success. With a growth mindset, you are driven by the desire to learn and improve. You are less afraid of new challenges, as a failure just indicates your current (not permanent) skill level. A failure is just a data point. Because you are capable of overcoming short-term failure, you can envision a path to success through hard work and improvement. Failure is considered as a simple bump in the road that can be overcome. It is just one point in the cycle towards ultimate success and can snowball into big outcomes.

What happens when your experiment fails?  Fixed mindset:

  • You might not have tried the experiment in the first place
  •  You subconsciously do something wrong in the setup – now you have an excuse when it fails
  • When you get bad results, you blame other people or external factors “they ‘ruined’ your experiment”.
  •  You view trying again as fruitless
  • But, give it a half-hearted effort to keep advisor/professor happy

Growth mindset:

  • You acknowledge that experiments might not work
  • You give your best effort to get things right
  • When you get a bad result, you view the experiment as a challenge that you want to solve
  • You view trying again as productive and fun because you believe hard work can (eventually) yield progress
  • It doesn’t matter what others think because you know you’re giving your best

FLAMEnet

Realizing the importance of these concepts, Professor Heemstra began delivering a 4-part active “Failure Training” curriculum that combines videos, lecture, social media and reflective writing into her lab courses. She then recognized this training could be improved if her lab became involved in education research. Heemstra reached out to an interdisciplinary team of psychologists, education researchers and STEM instructors across multiple institution types. Soon after, the “Failure as part of Learning, A Mindset Education Network”, or FLAMEnet was born. Over 3 years, membership to FLAMEnet has expanded to include more than 100 members. The focus has now expanded to include multiple intrapersonal factors and their impact on student success, analyzing how students learn and their retention in STEM.

The Power of Yet

Success may be defined by the moments when everything is going right, but it is largely determined by what we do in the moments when everything is going wrong. It is important to shift our thinking and embrace the adage: We are not there…yet. A more realistic plan is to adopt a growth mindset pathway. Tenured faculty likely achieved major successes by stepping out of their comfort zone a little bit every day, doing things that were a bit challenging—one step at a time. It is perfectly fine to figure things out as you go. Dealing with the failure of not achieving goals when we expect to achieve them can be the most important days of our careers. These days make us stronger and likely more empathetic. They help us gain clarity and broaden our vision of what is possible. As scientists, our days are filled with running experiments because we see there is something interesting to learn. In reality, our whole life is an experiment and it’s the most interesting experiment you will ever run.

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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.

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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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World Health Organization Webinar Series on Physical Activity: ReInvent & ReBuild

COVID-19 has impacted on how, where and when people can be physically active and play sport, disrupting access to facilities, clubs, community programmes and services. It has increased the importance of being active for mental and physical health and yet exacerbated inequalities.

Through a series of webinars, involving panellists from across the sport and physical activity system and audience Q&A, the World Health Organization is exploring different dimensions of what it will take to build back better.

Speakers will address 4 emerging and interconnected challenges to identify the practical actions needed during COVID recovery to build back better:

  • innovation,
  • partnership,
  • use of evidence, and
  • accountability and investment.

These themes intersect and recommendations arising from the webinar series will inform WHO and stakeholder’s future policy and practice.

Who can/ should sign up for the webinars?

All webinars are open to public and professionals across the physical activity and sport system including exercise, fitness, sport, physical activity, primary health care and public health from across public, private and social enterprises. Read more >>

Registration link: https://tinyurl.com/fdc5yw8k

Registration link: https://tinyurl.com/23s3apvj

Registration link: https://tinyurl.com/55xx2kax

Registration link: https://tinyurl.com/ypprspsc

Registration link: TBC

Registration link: TBC

 

 

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Webinar Spotlight: Science Misinformation

IMHA recently held a webinar targeting science misinformation with Professor Timothy Caulfield, Professor of Law at the University of Alberta and Research Director of the Health Law Institute. Drawing from examples in his new book “Relax, Dammit!”, Professor Caulfield took us through thought-provoking topics ranging from the infodemic to negativity bias and from cultural forces to personal branding. Here are 7 highlights.

The infodemic and misinformation

  • We are in the middle of an infodemic and it is impacting both our physical and mental health. This, in turn, affects our ability to filter out good from bad information.
  • Statistics Canada reported that 96% of Canadians see misinformation daily and 90% of Canadians receive their information online.
  • Surveys also found that 61% look at their phones immediately after waking up in the morning (75% while on the toilet!) and approximately 80 times throughout the day while on holiday.
  • While not entirely a social media phenomenon, the spread of misinformation is largely attributed to social media.

Observational studies and negativity bias

  • Observational studies are over-represented in the popular press. This is what the general public typically sees.
  • Only 19% of observational studies represented in popular press disclose that they are observational and note the limits of those studies.
  • People, in general, have tendency to latch on to negative news and allow that news to impact behaviors and beliefs.
  • Negativity bias is powerful. The popular press capitalizes on this because negative headlines outperform positive ones.

Cultural forces, availability bias and pop culture

  • Social trends can impact our decisions which in turn can lead to dominant cultural norms. For example, driving kids to school has become a societal norm for fear of “stranger danger”—the fear of children being abducted on their way to school.
  • A policy statement from the University of British Columbia determined that the chance of a child being abducted by a total stranger is one in 14 million.
  • Just one adverse event that happens anywhere in the world (not necessarily in Canada) can easily overwhelms all statistics, impacting decisions and actions. Powerful anecdotes can overwhelm our scientific thinking.
  • Pop culture—especially TV programming and movies—can deeply impact our perception of crime rates and fear. This in turn can also influence the decisions we make.

Myths and personal identity

  • When presented with an enduring belief, a good rule of thumb is to ask yourself “Is this true?”. For example, drinking 8 glasses of water per day for health. There’s no evidence for that.
  • The marketing industry strongly influences why some myths endure for decades and become cultural norms.
  • Tap water in most parts of Canada, is safe to drink. Yet, the wellness industry has turned water (and related peripheral products) into a multi-trillion dollar industry.
  • When something becomes part of your personal brand (‘I’m a Starbucks drinker’), it becomes much more difficult to change your mind and marketing experts know this.
  • We are seeing this happen right now with misinformation around the pandemic, masks and vaccines.

Exercise

  • In a study of people who exercise, 36% overestimate the amount of exercise they do. In those who don’t exercise enough, 61% overestimate the amount they do. For parents, 88% feel their children get enough exercise when approximately 7% of children meet guideline activity levels.
  • Exercise guidelines, technology and monitoring can be complicated or confusing. Often, when you try to quantify something, people enjoy it less and they stop the activity.
  • How much to exercise? The answer is simple: just move.

Illusion of Difference

  • The Illusion of Difference—and this is something that impacts all of us all the time—is the idea that you think you can tell the difference between things when you can’t.
  • In a study from Edinburgh, Scotland, nearly 600 people were asked if they could tell the difference between cheap and expensive wine. Just 53% got the answer correct (basically, chance).
  • Be aware that technology is always criticized, whether it’s comic books, movies, television, computers, or the internet—and has been since the Gutenberg printing press in 1440. We need to be cautious about technophobic approaches and be sure decisions are based on good data.

How to Debunk Misinformation

  • Just being aware of these cognitive biases matters. It allows us to make more informed choices.
  • Debunking does work. It is up to us to do it.
  • The backfire effect—the belief that people become more entrenched in their views when presented with facts—isquite rare.
  • Rule #1: Listen! People’s concerns are based on different things.
  • Using good science matters! Referring to the body of evidence is likely to be more persuasive.
  • Highlight the gaps in logic used to push the misinformation: anecdotes, things that play into negativity bias, testimonials, misrepresentations of risk, conspiracy theories, etc.
  • Be humble. Be nice. And be authentic when defining misinformation.
  • Creativity wins. We have to start using narratives, stories, art, and humor, in order to get across the good stuff.
  • Good science should be shareable.
  • Always remember that the general public is your audience, not hardcore deniers.
  • Relax! Current research shows how important it is just to have people pause … and reflect. By nudging Canadians to pause first—and share after—we can have a measurable impact on people sharing misinformation.
  • Join Science Up First (#ScienceUpFirst) / @scienceupfirst). It is an initiative for us to share good credible information on social media. Go Science!

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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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Update from the Canadian Musculoskeletal (MSK) Rehab Research Network


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