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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Research Advances: SkIN Canada

 

 

 

 

 

 

 

 

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