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eROAR2013: A case study on sustaining patient-research collaborative practices

Patient engagement is encouraged from the moment the patient steps into their doctor’s office and has been demonstrated to improve the patient’s overall health outcome. In recent years, the term “patient engagement” has emerged in health research and knowledge translation. A study published in the Journal of Participatory Medicine reports on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board of Arthritis Research Canada. Using a case study approach, study authors describe the planning and the event itself, report on the challenges encountered, and note reflections and solutions that are pertinent for sustaining patient-research collaborative practices.

Definition of patient engagement

According to the study, patient engagement in research varies from minimal involvement to more participatory collaboration, and is broadly understood to occur when patients meaningfully and actively collaborate at any stage of the research process, from setting the research agenda to designing the research project, collecting data, and disseminating results. The foundation of patient engagement in health research is based on:

  • the motto “Nothing About Us Without Us” from Charlton J.’s study “Nothing about Us, Without Us: The Dialectics of Disability Oppression and Empowerment”
  • encouraging citizen empowerment through participation and wider societal developments
  • activating “patient as partners” to create patient-centred care and promote shared decision making
  • meeting current research values and ethical concepts such as mutual respect

The history of the Arthritis Patient Advisory Board (APAB) 

The Arthritis Patient Advisory Board (APAB), formerly known as the Consumer Advisory Board (CAB), is comprised of volunteer advocates with arthritis who bring personal experience and arthritis knowledge to research decision making at Arthritis Research Canada (ARC). Their goal is to ensure the patient perspective is represented on research matters related to prevention, treatment and self-management of arthritis. Individually and collectively, they communicate research information and findings to arthritis patients, professional organizations and the general public.

Their mission is “to participate in all components and phases of arthritis research, and serve as a bridge between researchers, people with arthritis, and the community at large.” Since 2006, APAB members have organized annual knowledge translation events called Reaching Out with Arthritis Research in Vancouver, Canada. Each interactive event includes presentations from patients, researchers and health professionals. Topics covered include practical disease management information, best practices in prevention and management of arthritis and case studies from current research.

Planning and Preparation

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Study shows that when care quality goes down, lupus damage goes up

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According to findings from a recent study, poor patient-provider communication and care coordination result in increased damage in patients with systemic lupus erythematosus (SLE). If you would like to learn more about how to best communicate with your rheumatologist and physician, please visit JointHealth™ Education and take Lesson 1: The Art of communicating with your rheumatologist.

The research, titled “Relationship Between Process of Care and a Subsequent Increase in Damage in Systemic Lupus Erythematosus” was published in Arthritis Care & Research. The team wanted to understand how data from the Lupus Outcome Study could be used to evaluate healthcare interactions and subsequent accumulation of damage by the disease over two years.

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New research suggests why Osteoarthritis is more common in Women

According to the Centers for Disease Control, women are more likely to develop osteoarthritis (OA) than men. Even though osteoarthritis is the most common form of arthritis, scientists have not been able to find the reasons for this unequal trend.

A team of arthritis researchers from Augusta University (Kolhe et al.) have found new knowledge that can help explain why women may be at more risk for OA than men. The researchers looked at the “exosomes” (cellular packages filled with different substances our cells release to aid with cell communication) released in both male and female patients with OA.

The exosomes the researchers were concerned with were the ones that held microRNAs (miRNAs). miRNAs are short segments of RNA (a template in all cells that helps to transmit DNA instructions) that help to regulate how our body expresses the genes held in our DNA.

The results found that the miRNAs found in the exosomes studied behaved very differently in men and women. The differences lie in female miRNAs that have to do with collagen production and estrogen signaling; the female miRNAs were altered and deactivated more often than male miRNAs.

This difference led the researchers to look at estrogen’s role in OA. What they found was that when estrogen levels dropped, there was an increase in the number of cells that break down bones. This correlation is important because when women enter menopause their estrogen levels drop possibly resulting in an increased susceptibility to OA and possibly explaining why women have OA more often than men.

The team’s research into exosomes, microRNAs, and estrogen’s role in osteoarthritis provides important new insights into why women may be more at risk for developing osteoarthritis than men. For more information on osteoarthritis and treatment solutions visit Arthritis Consumer Expert’s spotlight on osteoarthritis.

Could Your Gut Help Prevent Rheumatoid Arthritis?

The bacteria in your gut do more than break down your food. They can also predict susceptibility to rheumatoid arthritis. More than 300,000 Canadians have rheumatoid arthritis, an inflammatory disease that causes painful swelling in the joints and scientists still have a limited understanding of the processes that triggers the disease.

A study published by a team of researchers from the Center for Immunology and Inflammatory Diseases at Massachusetts General Hospital have investigated a potential relationship between the mucous membrane of the gut and prevention of rheumatoid arthritis.

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Decreased rate of joint replacement for RA patients on biologics

Knee with osteoarthritis

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A study published in the European League Against Rheumatism Annual Congress last month shows that the incidence of knee and hip replacement declined after the introduction of biologics to national rheumatoid arthritis (RA) treatment guidelines.

The study looked at 30,868 patients diagnosed with RA at the rheumatology department between 1996 and 2011 and compared them with 301,527 controls from the general population. The baseline total knee replacement (TKR) incidence rate per 1,000 person-years was 5.87 for RA versus 0.42 for the controlled group. Prior to 2002, the incidence of total knee replacement increased among RA patients, but started to decrease after the introduction of bDMARDs and their associated guidelines in 2003. In February of 2007, the rate of TKR changed to 1.8 TKRs/1,000 person. Over the study period, the incidence of total knee replacement and total hip replacement increased among the general population controlled group. In contrast, there was a downward trend among RA patients.

Lene Dreyer, MD, from the Center for Rheumatology and Spine Diseases in Denmark, is one of the author the study. Dreyer explained: “Our findings show a clear downward trend in these two operations in RA patients in Denmark since the additions of [biologic disease-modifying anti rheumatic drugs] bDMARDs to treatment protocols. Also, the overall pattern of our findings is in line with those recently reported from England and Wales.”

Below is a video examining the quality of rehabilitation care, specifically in hip and knee replacements: Continue reading

Are you interested in health research? Let’s talk!

Lets talk health research bannerThe BC Health Research Connection Project invites you to a community dialogue on health research. Registration is free.

You’re invited to a community dialogue on health research to discuss the development of a new provincial program that will help connect people like you to research opportunities. Below are the details for the event:

Date: Tuesday, June 27, 2017
Time: 5:45pm-8:00pm
Marpole-Oakridge Community Centre (Auditorium)
990 West 59th Avenue,
Registration: Free, click here. Please register by June 23.
*Refreshments will be served.

Whether you are healthy, sick, young or old, you can help by volunteering to participate in research in a variety of ways.

Come and share your ideas and tell us:

  • Why is health research important to you?
  • How can we keep you informed of research opportunities?

For additional information, contact:
Stefanie Cheah, Project Manager at or 604-875-4111 (Ext. 22781)

The event is hosted by the BC Health Research Connection Project, which is led by Vancouver Coastal Health Research Institute in collaboration with health authorities, research institutes and universities across BC. Cheryl Koehn, Founder and President of Arthritis Consumer Experts, is a member of the research team.

What resources do you want to see in the EQUIP-TJR toolkit?

EQUIP banner for research studyHere’s your chance to take a Canada-wide survey on the patient’s views on quality indicator resources for hip and knee replacement rehabilitation.

Researchers at the Centre for Hip Health and Mobility in Vancouver have developed quality indicators (QIs) for hip and knee replacement rehabilitation. Quality indicators state the quality of rehabilitation care that all patients having a joint replacement for hip or knee osteoarthritis (OA) should expect to receive. They are currently creating a ‘toolkit’ to help people like you and your families learn about these QIs and use them to: Continue reading

Forty percent of people will be affected by symptomatic hand osteoarthritis

picture of a hand over grassAccording to a recent study published in Arthritis & Rheumatology, forty percent of people will be affected by symptomatic osteoarthritis in at least one hand.

The study was conducted by the Arthritis Program at the U.S. Renters for Disease Control and Prevention in Atlanta. Lead researcher Jin Qin, Sc.D, and his team looked at 1999 to 2010 data on 2,218 individuals from North Carolina, ages 45 or older. Data collected include participant reported symptoms and hand X-rays.

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“Preventing Rheumatoid Arthritis (Pre-RA): perspectives of people with RA, people at risk and of rheumatologists” study

Logos for pre-ra rheumatoid arthritis study“Preventing Rheumatoid Arthritis (Pre-RA): perspectives of people with RA, people at risk and of rheumatologists” study

Join the study as a patient with RA or first-degree relative

A research study funded by the Canadian Rheumatology Association’s Initiative for Outcomes in Rheumatology cAre (CIORA) wants to understand the perspectives of people with RA, those at risk of RA and health care providers about potential treatments aimed at preventing rheumatoid arthritis. Arthritis Consumer Experts is a partner organization on the project.

Are you:

  • Aged over 18?
  • Someone with rheumatoid arthritis OR you have a first degree relative (parent, sibling, adult child) with rheumatoid arthritis?
  • Someone with access to a computer and the internet?

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Free webinar – Citizen as KT agent: Keeping the government informed about research

KT Connect Free Webinar BannerThe Michael Smith Foundation of Health Research and Arthritis Research Canada have partnered to co-develop and host a series of monthly expert-led, beginner-level KT training webinars with the goal of developing a sustainable resource for researchers and trainees to learn knowledge and skills that will enable them to develop KT practice in their work.

Webinar details

Topic: Citizen as KT Agent: Keeping the government informed about research
Speaker: Cheryl Koehn, Founder and President of Arthritis Consumer Experts
Date and time: Friday, April 28, 2017 from 12:00 pm-1:00 pm PDT
Register: Please click here to register for this free webinar
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