by | December 16, 2022 · 11:30 am

Addressing barriers and gaps in oral health care – moving from access limitations to health equity for people living with disabilities

By: Dr. Sharat Pani

spani@uwo.ca

 

Background

The CIHR recently awarded a 5-year grant to the Network for Canadian Oral Health Research (NCOHR).  The NCOHR was originally established in 2012 to serve as a platform where researchers and research teams from the 10 dental schools in Canada could come together to advance oral health research.

The lack of access to oral health care among socioeconomically disadvantaged individuals, individuals with disabilities and First Nation populations in Canada have been well-documented. As there is little research on the specific challenges to access of oral health care that each group faces, NCOHR has launched 7 Working Groups (Aging and Well-being, Pediatrics and Growing Healthy, Indigenous Peoples Health, Oral Cancer, Orofacial Pain, Disability and Oral Health, and the CADR-NCOHR Trainee Development). We have opened a grant competition to fund research into the barriers and gaps in oral health care, from access limitations to health equity.  Here we examine the lack of access to oral health care for people living with disabilities and how solutions may be found through collaborative research.

 

Researching Access to Oral Health Care for Individuals with Disability

The 2017 Canadian Survey on Disability reported that 22.7% of individuals over the age of 15 experienced disability in some form. Previous disability surveys have not looked at access to oral healthcare, levels of oral disease, or oromotor function (ability to speak, chew or swallow) among people living with disability. The current disability survey (2022) is in progress and the report is expected by the end of 2023 and will for the first time include data on accessibility barriers faced by Canadians with disability. However, there is still much work to be done to collect and analyze data on access to oral healthcare for these individuals.

The Disability and Oral Health working group of NCOHR was established in 2022 to promote research on the oral healthcare needs of individuals with special healthcare needs. The group has established collaborations with the Canadian Society of Disability and Oral Health and the International Association for Disability and Oral Health.

There are two components to accessible oral health care the willingness of dental care providers to provide care for persons with disabilities and their ability to do so. Access to oral health care for individuals with disabilities requires oral health professionals who are willing to treat them. However, it also requires individuals who have the required training to provide care within dental offices, and more importantly, effectively triage those cases that need to be seen in the hospital. With this in mind, the group has begun work on research projects that look at how Special Care Dentistry is taught among the dentistry and dental hygiene programs in Canada.

The Canadian Dental Association and the Canadian Society for Disability and Oral Health in 2019 developed a case complexity tool that aimed to provide oral healthcare providers an effective tool to triage patients with disabilities (Fig 1.). It has been estimated that in countries that have established special care dentistry referral pathways, fewer than 10% of patients living with disabilities need to be seen in a hospital setting. A validated tool for the triage of patients with disabilities could help oral health care professionals in Canada see more patients living with disabilities in their offices and effectively triage those individuals that need to be seen in hospitals. Validation of this tool is a priority for the working group, and it is hoped that the use of an effective tool can facilitate access to dental care for individuals with disability.

(Source: Canadian Dental Association: accessible online at: http://www.cda-adc.ca/en/oral_health/cfyt/special_needs/)

 

The path forward

The 2022 WHO, Global Oral Health Report recognizes persons living with disabilities as a significant cause of oral health care inequality. The renewal of the NCOHR grant and the recognition of “Addressing barriers and gaps in oral health care” as an area of priority for collaborative research provides a much-needed launch pad for research into the oral healthcare needs of persons living with disability in Canada. It is hoped that collaborative research into the oral healthcare needs of persons living with disabilities can help address the causes, and provide potential solutions to the oral health care inequalities experiences faced by these individuals.

 

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by | · 11:23 am

Fantastic Teeth and Where to Find Them

By: Noha Gomaa, Schulich School of Medicine and Dentistry, Western University

ngomaa@uwo.ca

@DrNGomaa

 

“Show me your teeth, and I will tell you who you are.” This almost 300-year-old quote by the French naturalist and father of paleontology George Cuvier was initially intended to describe how the structure of teeth varied by the type of diet that was consumed by different populations. Cuvier’s remark, although unintentionally, has proven to extend beyond its comparative anatomy connotation to portray the stark differences in oral health between socially advantaged and disadvantaged groups of the population. Oral health today continues to be determined by and reflect one’s social and economic conditions.

 

Observing such oral health inequalities gives rise to important questions around why social plight makes individuals more prone to oral diseases, and on the other hand, what makes fantastic teeth a trait of social advantage. The answer is a multi-factorial one in which several forces are at play. Good oral health has occasionally been attributed to one’s “good genes” that can be protective against acquiring some of the most common yet preventable oral diseases, such as dental cavities/caries and gum inflammation. However, genetic studies do not, on their own, fully justify the variation in oral disease risk, and are certainly unable to explain any oral (or non-oral) health inequalities. Along with the other determinants of health, an individual’s social and economic conditions can impact their access to resources such as quality dental care, adequate nutrition, and fresh produce, while deterring their consumption of sticky and starchy foods that are known to cause oral diseases. Variations in health-compromising behaviours such as oral hygiene practices and smoking have also long been considered as some of the main drivers of oral disease risk that are largely determined by one’s social stance. Earlier studies have however suggested that aiming to enhance oral health behaviours by educating patients about brushing and flossing, while definitely important, may arguably fail to yield the anticipated sustainable results—at least not for those with less resources.

 

Here, the role of psychosocial stress emerges. Chronic stress can result from the low-grade yet persistent exposures to adverse social and living conditions on a daily basis. Studies in psychoneuroimmunology have demonstrated the pivotal role of chronic stress in several health conditions. Stress acts on various biological responses, putting the hypothalamic-pituitary-adrenal axis in a constant activation mode. This in turn triggers a cascade of multi-system stress responses that contribute to the increased vulnerability to a multitude of diseases, including those of the mouth. Our team at Western University has been diving deeper into how the psychosocial environment and related chronic stress can “get under the skin and in between teeth” to become biologically embedded. In our previous clinical studies, we found that a higher accumulation of the stress biomarker cortisol in hair and saliva was linked to an increased risk of periodontal disease (inflammation of the tooth-supporting structures) in individuals of lower income. These patients also exhibited oral innate immune cells (neutrophils) that were primed to be more conducive of oral inflammation. In a large study of American children and adolescents, we found the risk of untreated dental cavities to increase with the multi-system cumulative biological toll of chronic stress, known as allostatic load. We noted this as being more evident in children from minority racial/ethnic backgrounds. More recently, we started investigating how social disadvantage and related chronic stress may increase oral disease risk by getting down to the level of the genes involved in oral disease initiation and progression. We anticipate providing insight into how oral health inequalities occur over the life-course, and why socially disadvantaged individuals become more susceptible to oral diseases than their more advantaged counterparts.

 

To this end, we can conclude that fantastic teeth may not just be found with good genes or oral hygiene. For many, they are a prerogative of affluence and access to enabling resources that can determine whether one becomes susceptible or resilient to oral diseases. Consequently, concerted multi-level solutions that target social and living conditions, curb psychosocial stressors (and their biological toll), and enable equitable access to quality oral health care, will continue to be key.

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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 | June 11, 2022 · 3:31 am

8-year anniversary of the famous “Research Waste” series. Have we progressed?

In January 2014, Professor Ian Chalmers and colleagues including Jonathan Grant, Ben Djulbegovic, and John Ioannidis launched a landmark Lancet series relating to research waste? Why ‘landmark’–isn’t that an overused trope? Not in this case because these preeminent scientists were looking in the mirror. Instead of ‘more research is needed’ and ‘more funding is needed’ these global leaders examined avoidable waste. Also in 2014, the METRICS (Meta-Research Innovation Centre at Stanford) launched.

They were heady days indeed. During that year the Centre for Open Science, in collaboration with Science Exchange of Palo Alto were trying to replicate findings from key cancer biology trials. You can guess how that worked out. Or read about it here.

If this isn’t too depressing you can get up to speed quickly via Rigor Mortis by NPR journalist Richard Harris. Who is not to be confused with the other Richard Harris (both great, of course). It’s a four-hour read that will change your life if some of what you are hearing here is news. Thanks to David Moher @dmoher for pointing me to that one.

Kudos international award-winning science graphist Vicky Earle @EarleArt for the graphic above and more to come on this blog … k2

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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 | December 13, 2021 · 10:16 am

The Annual Canadian Arthritis Research Conference (CARC) Returns for Third Year

The third annual Canadian Arthritis Research Conference (CARC), co-presented by the Arthritis Society, the Canadian Rheumatology Association and the Canadian Institutes of Health Research/IMHA, takes place virtually February 7-8, 2022. CARC brings together multidisciplinary stakeholders to explore perspectives, advance knowledge and enhance Canadian leadership in the world of arthritis and rheumatic diseases.

This year’s theme, Research with Impact, features a range of presentations, discussions and networking opportunities with experts, researchers, patients and emerging leaders from the arthritis community. Two keynote speakers and 18 presenters will deliver talks on a range of topics. All program details are available online at arthritis.ca/carc). In addition, this conference provides a forum for investigators to share ‘Best Research’ presentations.

Last year, speakers discussed medicine and rehabilitation in both osteoarthritis and rheumatoid arthritis, including topics ranging from the impact of the COVID-19 pandemic on the employment of young people with rheumatic disease to new diagnostic and therapeutic tools for intervertebral disc degeneration and back pain. There were also several “Ask Me Anything” panels, where presenters and attendees discussed presentation topics in more detail.

Dr. Jackie Whittaker of the CARC Scientific Committee says the conference is a great opportunity to hear the latest in arthritis research and is also a chance to share ideas with a goal of improving the health of people living with arthritis.

“The challenges of arthritis are varied and vast. Building on the success of the previous two conferences, we are assembling experts and stakeholders to further advance research to better the health of Canadians living with arthritis and rheumatic diseases,” said Dr. Whittaker. “Opportunities like CARC allow us to collaborate and share learnings among clinicians, scientists, patients and stakeholders nationally and internationally. We look forward to some very engaging discussions.”

In addition to the two-day conference, Research Presentation Days take place on January 25th and 31st, 2022, providing a public platform for presentations including systematic reviews, all types of original research, and evidence synthesis. These sessions are more intimate, allowing conversations and questions about the research with the CARC Scientific Committee and other research presenters.

For more information about the conference and to register, visit arthritis.ca/carc.

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by | November 10, 2021 · 12:21 pm

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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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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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