Patient engagement in research or patient-oriented research refers to patients, their family members and other informal caregivers partaking in research as more than study participants but as members of the research team. For example, involving patients in some or all parts of the research process from deciding what topic is studied, to how the research is conducted to how the findings are presented and used.
Partnering with patients ensures that health research is both relevant and meaningful to the patient community. For example, in rheumatology, patients’ perspectives have been instrumental in broadening the scope of the research agenda to include more patient-relevant factors such as well-being, fatigue and sleep patterns. These are significant aspects of life with inflammatory forms of arthritis, yet until recently the topics were largely ignored or underrepresented in research and outcome measurement. This example depicts why patient engagement is so critical. If researchers do not work with patients how can they know what they are studying is relevant to the population that will be most affected by it? It is in this context that the saying “nothing about me, without me” applies so strongly. Other benefits of patient engagement include enhanced quality of research with more perspectives considered, meaningful role(s) for patients and greater involvement in their communities, co-learning between patient and researchers as well as getting important research findings to a broader audience. Overall, patient engagement is a promising way to improve healthcare services and patient experience.
Figure that summarizes the components of meaningful patient engagement in research from a patient perspective. Developed by the PIERS Project Team
ACE is sharing the latest research news from this year’s European League Against Arthritis’ (EULAR) Annual European Congress of Rheumatology in Amsterdam, Netherlands.
ACE is attending this year’s annual meeting of the European League Against Arthritis (EULAR) in Amsterdam, which will be host to 14,000 participants from more than 120 countries in Europe and around the world. This year, EULAR received more than 5,050 research abstracts – the most ever. The meeting will feature over 175 sessions and 45 themed poster tours with more than 560 speakers showcasing work from 2,256 poster displays. ACE is here to learn the most current information on the impact, burden and cost of arthritis for patients and society, and the improved ability to diagnose and treat different types of arthritis early.
Many of these advances are the product of collaboration between healthcare providers and patients and patient organizations like ACE. We will be reporting over the next few days on how this collaboration is advancing models of care and development of advanced therapies.
ACE is also leading a meeting with members of the Global RA Network who are attending EULAR. At the meeting, ACE will facilitate discussion on the development of tools for Global RA Network members to use in their countries to raise awareness and advocate for improved models of care. Based on the 2017 Global RA survey findings, ACE is proposing to develop tools that will improve RA patients’ understanding about the kind and quality of care they should be receiving in their country to improve their disease and overall health.
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 17, 2018 at The Roof – 15th floor at Fairmont Hotel Vancouver. The evening’s entertainment will feature Colin James with a guest appearance by RBC Olympian Spencer O’Brien. Fred Lee, CBC, Vancouver Courier and The Province’s Man About Town, and Sonia Deol, Global BC Reporter and Anchor, will be co-emcees for the event. Click here to purchase tickets.
For those attending, remember to participate in the live and silent auction and raffle. The raffle will be for Tag Heuer Carrera Automatic watch, donated by Golden Tree Jewellers. Live auction items include: Continue reading →
In Arthritis Consumer Experts’ (ACE) April JointHealth™ insight, we explore what “personalized and precision medicine” – the theme to this year’s Canadian Rheumatology Association Annual Meeting and Arthritis Health Professions Association Annual Meeting – means to arthritis patients and health care providers. To help you, we have prepared a curated guide to a selection of #CRArthritis interviews, outlining key points covered during the event.
Among the topics of interest to patients, the interviews provide information on:
Personalized and precision medicine
Spondyloarthritis and psoriatic arthritis – Advancements in diagnosis and therapy
Giant cell arteritis and vasculitis
Exercise as medicine
Medical marijuana and pain management
Improving access to and quality of arthritis care
New research on preventing rheumatoid arthritis
Communicating with your doctor
Teamwork and patient-centred care in arthritis Models of Care
All interviews can be accessed through YouTube, Twitter, and Facebook.
To turn on French subtitles, please adjust the YouTube settings for each interview.
Thanks to our fans and followers, Arthritis Broadcast Network’s 2018 #CRArthritis Facebook and Twitter Live event reached over 94,205 people to date!
We did it! The Arthritis Broadcast Network (ABN) #CRArthritis Facebook and Twitter Live event at the Canadian Rheumatology Association (CRA) Annual Scientific Meeting and Arthritis Health Professions Association (AHPA) Annual Meeting conducted a total of 39 interviews (7 more than last year) in a little over 48 hours. Thank you to all of our interviewers, interviewees, and online audience who participated in the event. Because of you, the #CRArthritis event have informed and educated over 94,205 people to date. We’d say that’s an unqualified success, and you were a central part of making it happen – thank you!
The University of Regina is looking for participants to evaluate an online pain self-management program, completed with Do-It-Yourself Guides, Stories and Additional Resources.
The University of Regina is seeking seniors to enroll in a research study to evaluate a pain self-management program for older adults(www.onlinetherapyuser.ca/olderadults). This program is only offered in English.
The research study is led by Thomas Hadjistavropoulos, Ph.D., Professor and Research Chair in Aging and Health, University of Regina. The purpose of this study is to explore the acceptability and effectiveness of a remotely-delivered chronic pain management program tailored to older adults, the Pain Course, when delivered in both online and printed (workbook) formats.
This program requires a 3-month commitment, as participants will have 2 months to work through the course material with a 4-week follow-up period.
Recruitment will take place across Canada and participants will be eligible for the study if they:
are a resident of Canada
are 65 years of age or older
have experienced pain for more than three months
do not have severe depression or anxiety
have regular access to a computer and the internet
Potential participants will be required to complete a preliminary screening and telephone assessment. If participants meet the inclusion criteria, they will be required to complete questionnaires at pre-treatment, post-treatment and 4-week follow-up.
The course includes 5 Core Lessons over a 2-month period, along with Do-It-Yourself (DIY) Guides, Stories and Additional Resources that will be available throughout this period.
Want to know what Canada’s leading rheumatologists are thinking? Join us for our #CRArthritis Facebook and Twitter Live event!
Arthritis Consumer Experts hosts the #CRArthritis Facebook and Twitter Live event
Powered by ACE and supported by representatives from the Arthritis Patient Advisory Board of Arthritis Research Canada and the Canadian Spondylitis Association, Arthritis Broadcast Network (ABN) will be interviewing keynote speakers, meeting attendees, patients living with arthritis, and disease experts. We invite you to participate in the Facebook and Twitter Live event. Like, share and retweet the live interviews, send us your comments or questions through Facebook and Twitter during the interviews.
Total hip arthroplasty (THA) and total knee arthroplasty (TKA), also known as hip/ knee replacements, are surgical procedures in which parts of the joint are replaced with artificial material to restore function and ultimately reduce pain. As an arthritis patient, if other forms of treatment have not improved the joint’s ability to function or been able to prevent additional damage, your rheumatologist may recommend arthroplasty.
A recent study conducted by a team of Canadian Physiotherapists at The University of Western Ontario has discovered valuable information regarding the impact of prehabilitative care prior to arthroplasty. The team wanted to see if education and exercises for patients before surgery (prehabilitation) impacts pain, function, strength, anxiety and length of hospital stay after surgery (post-operative outcomes).
ACE presenting abstract at American College of Rheumatology (ACR) Annual Meeting
Cheryl Koehn will be presenting Poster 353 on Sunday, November 5 between 9 am-11 am: Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey
The 81st American College of Rheumatology (ACR) Annual Meeting being held November 3-8 in San Diego is the world’s premiere meeting of over 12,500 rheumatologists and rheumatology health professionals, sharing the latest arthritis advances and research.
Arthritis Consumer Experts (ACE) is excited to announce that Cheryl Koehn, Founder and President of ACE, will be presenting Poster 353: Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey on Sunday, November 5 from 9am-11am at Poster Hall C. We encourage you to attend the presentation. Cheryl, as lead author of the abstract, will be discussing the results of a first ever global survey, by patients, for patients, examining what patients’ RA models of care experiences are like in their country.
The survey was conducted by the Global RA Network, founded in 2016 by RA patient organizations and leaders from 21 countries to build international relationships and work on common goals and initiatives to improve the lives of people living with RA around the world.
Massage therapy for arthritis is conducted by a licensed massage therapist or physiotherapist. After consulting with your specialist, you can do self-massages at home. In a research study, Tiffany Field, PhD, director of the Touch Research Institute at the University of Miami School of Medicine, found that regular use of the simple therapy led to improvements in pain, stiffness, range of motion, hand grip strength and overall functions of the joints.
In another study, Field and her team found that massage also benefits people with painful hand or wrist arthritis. There were twenty-two adults, mostly women, in this study. The women have been diagnosed with either hand or wrist arthritis. Each participant was given four weekly massages from a therapist and taught to do their own massage to alleviate joint pain and soreness at home. Field concluded: “Just a 15-minute, moderate pressure massage per day, led to reduced pain and anxiety, and increased grip strength for the participants as measured on comparative pre- and post-therapy tests.”