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
The general election in Ontario is scheduled for June 7, 2018. What have party leaders and candidates said about arthritis care in Ontario?
Arthritis is a chronic disease that has a devastating and debilitating effect on the lives of more than 6 million Canadians and more than two million Ontario residents. Provincial policy directly impacts the lives of those living with arthritis and their families. The next Ontario provincial government must acknowledge the gaps in arthritis care and offer some solutions to the pressing issues facing people living with arthritis. To learn more about arthritis in Ontario visit our ON Election 2018 page.
On June 7th make your voice count. Arthritis needs to be heard and this can only be achieved through individuals exercising their right to vote to make positive changes in provincial arthritis care.
Arthritis Consumer Experts (ACE) sent a questionnaire to the party leaders and candidates of the 2018 Ontario Provincial Election, asking for their comments and promises on the following subjects:
models of care
Aboriginal arthritis care
reimbursement for inflammatory arthritis medications
flexible work arrangements
Over the past month, ACE collected Party and individual candidate’s responses. Responses have been posted on the ON Election 2018 section of ACE’s website, and we will continue to post responses as we receive them, up until the day of the election.
See what party leaders and candidates have said about issues related to arthritis in Ontario in order to make an informed vote for improving arthritis prevention, treatment, and care in Ontario.
If you have comments, questions, or concerns about any of the answers provided by candidates or party leaders, please take the time to contact the parties directly. Please click here to view the contact information for the registered political parties in Ontario.
Did their responses help you decide how you will vote? Tell us what you think of their answers. Please contact us by email.
Join the “virtual” race to increase public awareness of autoimmune arthritis
May 20th is World Autoimmune Arthritis Day (WAAD). The International Foundation for Autoimmune Arthritis established this commemorative date back in 2012. The virtual event unites dozen of nonprofits, advocates, and experts from around the world to provide educational and awareness information to autoimmune arthritis patients, their supporters, and the general public.
Participants and partner organizations will participate in a virtual global race by sharing organizational websites and resources via social media posts. WAAD is a 47-hour event hosted on May 20th for the duration of all Time Zones (May 19th 6am EST – May 21st 5am EST).
This year, the goal is to achieve 100,000 virtual miles as a community. Each “like” or “share” on Facebook posts and Twitter tweets equals 1 “awareness mile”. Each “like” or “share” on awareness poster or video posts will earn 10 “awareness miles”. Team ACE will be leading two event with the goal to drive 50 “awareness miles” through Facebook and Twitter:
Team ACE Twitter Poll – ACE will be asking survey questions about arthritis self-care and management. Answers will be summarized and reported out at the end of the campaign. #ACETwitterPoll
Team ACE Facebook Photo Blog – In marketing, it is documented that the human brain can process images up to 60,000 times faster than words. ACE will share pictures, accompanied by a simple text, that represents life with arthritis. #ACEPhotoBlog
You can participate online on Facebook and Twitter and follow the event’s hashtag #WAAD18. On race day, help Team ACE win the autoimmune arthritis awareness race:
The information and resources provided by ACE during #WAAD18 will help people understand the effects of autoimmune arthritis on patients and their caregivers, the economy, and the healthcare system. Patients will learn how to practice self-care at home and at work, such as learning how to exercise and manage pain and stress. Lastly, patients will be able to have meaningful conversations with their health care team members and determine the best treatment possible.
The general election in Ontario is scheduled for June 7, 2018. What change would you like to see in models of arthritis care?
Arthritis is a chronic disease that has a devastating and debilitating effect on the lives of more than 6 million Canadians. In Ontario, 40% of people with arthritis require help with daily activities, compared to 13% of people with other chronic conditions.
More than 1.7 million people – or 1 in 8 Ontarians – are living with osteoarthritis (OA). Within a generation (30 years), it is anticipated that 1 in 4 or 4.28 million Ontarians will be living with OA and one person in Ontario will be diagnosed every 3 minutes.
Rheumatoid arthritis (RA) can occur at any age. More than 105,000 people in Ontario were living with RA. The prevalence of RA is expected to rise by 82% by 2030. In 2040, 225,000 – or 1 in 77 people in Ontario – will be living with RA; one person in Ontario will be diagnosed with RA every 53 minutes.
Ontario’s next government needs to listen and consider the needs of these constituents. Arthritis Consumer Experts (ACE) sent a questionnaire to the party leaders and candidates of the 2018 Ontario Provincial Election.
According to the “Psychological well-being among US adults with arthritis and the unmet need for mental health care” published in the US National Library of Medicine National Institutes of Health, the prevalence of mental health conditions such as depression, anxiety, and serious psychological distress (SPD; a nonspecific indicator of mental health problems) is higher among adults with arthritis compared to the general population.
The study finds that in individuals with arthritis, mental health issues interact with other health conditions and symptoms of arthritis (e.g., pain, fatigue, and disability) such that a decline in one area can directly or indirectly affect the others. Mental health issues can increase the severity of disability, interfere with disease management, and increase disease severity and mortality. Providing mental health support for arthritis patients can improve their overall wellbeing. It has been documented that treating depression can improve medication adherence, and improve both psychological and physical outcomes for patients.
An important strategy for reducing the pain of arthritis is treating your depression. Two approaches can be used, non-pharmacological and pharmacological, together or individually.
Separate from improving mood, antidepressants have been shown to reduce pain in many different chronic conditions, including arthritis, and they work even when depression is not a factor. How these drugs work to reduce pain is not fully understood, but may have to do with improving sleep, relaxing muscles, or increasing neurotransmitters in the spinal cord that are responsible for lessening pain signals.
Please consult your doctor to discuss your treatment options.
On National Nurses Week, we want to thank you to all the nurses in the world!
Picture of nurses from American Nurses Association
Nurses play a major multidisciplinary role in health education and management of arthritis in the community. Patients living with extensive joint damage need ongoing treatment, care, and monitoring, along with motivation and instructions to adhere to prescribed drug therapies. The best way to do so is through a multidisciplinary approach where a varied healthcare team is made available to the patient. This team may include a rheumatologist, rheumatology nurse, registered nurse, pharmacist, physical therapist, occupational therapist, podiatrist, physician assistant, social worker, dietician, and counsellor. To ensure optimal physical, psychological, and social functioning and quality of life, the team provides education and support based on the patient’s goals.
Nurses can help patients manage and coordinate the plan of care established by their rheumatologist. We have outlined the role of the nurse in the disease journey below. Are you a nurse practitioner? Email us at firstname.lastname@example.org and tell us what you do to help patients!
During the initial assessment, a nurse can help alleviate a patient’s anxiety, anger, frustration, and depression by establishing a therapeutic relationship with the patient and his or her caregiver. Nurses can also assess the patient and caregiver’s understanding of the disease and its management, and evaluate their physical, emotional, and psychological well-being. Continue reading →
Ankylosing spondylitis (AS) is one of the most common types of inflammatory arthritis. It is estimated to affect up to 1 in 200 people.
Ankylosing spondylitis primarily affects the spine, but can also involve the hips, knees, shoulders, and rib cage. The most common symptom of AS is long-term back pain, along with spinal stiffness in the morning or after a long period of rest (this is the main reason why AS is often mis-diagnosed as ordinary “low back pain”).
Unlike in many other forms of arthritis where women are most affected, three out of four people diagnosed with ankylosing spondylitis are men. It tends to strike in the prime of life; while it can strike at any age, it is most common in people between ages 15 and 40. While it has no known cure, it is treatable; with the proper care, people who are diagnosed with AS can lead full, productive lives.
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On Feedspot’s list, ABN has the most videos and views on a Canadian channel – a total of 200 videos and 242,489 views!
Arthritis Broadcast Network’s channel provides information about the different types of arthritis, pain management, self-care, exercise, nutrition, models of care, patient engagement, research, and many other topics valuable to the arthritis community. Please show your support and help others living with arthritis by doing the following:
The research literature on exercise is growing, and it is now generally accepted that there are many benefits of exercise for arthritis and osteoporosis. General benefits of exercise include improved heart and lung function, weight control, and improvement of self-esteem and self-confidence.
Before starting an exercise program, at home or at a gym, it is important to speak to a health professional trained in exercise for arthritis and osteoporosis. They can help you to design an exercise program that will be both safe and effective.
Before, during and after exercise:
It is important to warm-up and cool down before and after exercising. Use range of motion or heat.
If you are still experiencing pain more than two hours after exercise – you may have done too much.
Use slow, planned movements when doing ROM and strengthening exercises.
Practice in front of a mirror until you feel confident you are doing the exercise as demonstrated by your health professional.
Take this survey to help Arthritis Research Canada advance research into symptoms.
A group of researchers from the University of British Columbia and other Canadian universities are developing a new survey to learn more about a wide range of symptoms that people have (for example, back pain, headache, fatigue, joint pain, anxiety, constipation, etc.). To inform the planned study, we would like to know the opinions of people like you whether this research is important and whether the findings may be valuable.