It’s summertime: What’s hot in arthritis research?
In this summer issue of JointHealth™ insight, we report on new information presented at the European League Against Rheumatism (EULAR) Annual Congress, which took place in Madrid, Spain, in June 2017. EULAR updates covered include:
EULAR’s “Don’t Delay, Connect Today” campaign to improve models of care for inflammatory arthritis
Immunogenicity studies that show comparable results between biosimilars and originator biologics
Research from Denmark finds no higher patient use of health services after policy transition to biosimilars
A best practice spotlight on helping patients understand biosimilars
In this issue, you will also find:
Information about a new Osteoarthritis (OA) Tool for family physicians
A profile of a young scientist’s research journey looking at osteoarthritis and biomarkers
With rapid changes in access to health care information and health technologies, managing your chronic disease is becoming more collaborative and patient-centred. The ROAR public forum features a group of researchers from Arthritis Research Canada who are at the forefront of these changes. They will share what the latest research, developed in collaboration with patients, is telling us about arthritis care and self-management. Updates on current research will be presented in a relaxed and informative series of talks for people with arthritis and those who care for them. Bring your questions, as this is an interactive forum.
When? Saturday, October 21st, 2017 – 9:30am-12:30pm (PDT)
Where? Live online webcast or in-person at the Vancouver Public Library Central Branch, Alice MacKay Room, 350 West Georgia St, V6B 6B1
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 Medicinereports 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.
Image courtesy of digital art at FreeDigitalPhotos.net
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.
The 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 Location:
Marpole-Oakridge Community Centre (Auditorium)
990 West 59th Avenue,
Vancouver 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 Stefanie.firstname.lastname@example.org 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.
Here’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 →
Hosted by Arthritis Research Canada, the ARThritis Soirée is an evening designed to attract the city’s business and community leaders, philanthropists, doctors, scientists, healthcare professionals, and those who have an appreciation of art and a desire to support arthritis research.
Research has shown art adds to one’s well-being and therefore is a great element in managing chronic diseases on a holistic level. Moreover, art adds an extra factor of excitement and depth to the Soirée each year with the introduction of a different art form.
This year’s event will take place on Thursday, May 18, 2017 at the Fairmont Hotel Vancouver. The evening’s entertainment will feature world-renowned violinist Jenny Bae.
In honour of Lupus Awareness Month, the Arthritis Broadcast Network is doing a throwback coverage on lupus. The coverage highlights Arthritis Research Canada and Arthritis Consumer Experts’ coverage of the 9th International Congress on Systemic Lupus Erythematous, Vancouver 2010 (“Lupus 2010”).The event was held in Vancouver, British Columbia, Canada in June, 2010. Hundreds of world leading researchers, healthcare professionals, and individuals living with systemic lupus erythematosus (SLE) learned about the current state of the science in SLE and future opportunities in lupus research, education and care.
A study published by researchers at the University of British Columbia suggests that rheumatoid arthritis (RA) patients are no longer facing a higher risk of death than the general population. The study analyzed mortality data and looked at death rates among RA patients versus deaths among a control group of the general population.
The study included an estimated 25,000 people. Patients were divided into two groups – the first one was those with RA cases diagnosed between the years 1996 and 2000 and the second group was those with RA cases diagnosed from 2001 to 2006. Researchers looked at and tracked doctor visit records and other patient information through the year 2010.
An article published in the Annals of Internal Medicine estimated that non-adherence resulted in approximately 125,000 deaths and at least 10 percent of hospitalizations, costing US health care system $100 and $289 billion a year.
The article reports that “studies have consistently shown that 20 percent to 30 percent of medication prescriptions are never filled, and that approximately 50 percent of medications for chronic diseases are not taken as prescribed. The review found that for people who do take prescription medications, they only take about half the prescribed doses.
Researchers from Northwestern University found that one-third of kidney transplant patients don’t take their anti-rejection medications. Other studies show that 41 percent of heart attack patients don’t take their blood pressure medications and only 50 percent of children with asthma use their inhalers as prescribed.
In an article in the New York Times, Dr. Bruce Bender, co-director of the Centre for Health Promotion at National Jewish Health in Denver, explained: “When people don’t take the medications prescribed for them, emergency department visits and hospitalizations increase and more people die. Non-adherence is a huge problem, and there’s no one solution because there are many different reasons why it happens.”