Groundbreaking research. Life-changing discoveries.

Simon Fraser University’s Pain Studies Lab is looking for research participants for a paid study on a mobile health application

You can participate if you are a person living with or a caregiver of someone living with osteoarthritis or rheumatoid arthritis. 

Research Objective
Pain Studies Lab at Simon Fraser University is seeking participants above 45 years old for a study on a mobile health application.

What do I have to do in the study?
The study will take about 2 hours to complete. You will be shown a mobile application meant to measure and track arthritis, and you will be asked questions about the usability of this application. There will also be an open-ended section to discuss your opinions about the application.

You will receive $40 as appreciation for your effort and time after completing the study.

How to participate?
To participate, you must be:

  • Above 45 years old;
  • The person or the caregiver of the person who has a diagnosis of osteoarthritis or rheumatoid arthritis;
  • Using a smartphone in your daily life, such as using one or more Apps regularly;
  • Able to communicate in verbal and written English.

Interested? Have questions?
For more information or to book your appointment, please feel free to contact us:
Weina Jin
Telephone/text: 604-603-8530
Email: weinaj@sfu.ca

On election day, make your voice count.

The general election in Prince Edward Island is scheduled for April 23, 2019. What changes 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. More than 25,000 Prince Edward Island residents are living with arthritis – approximately one in five. Within a generation, more than one in four Islanders are expected to have the most disabling and life-threatening types – osteoarthritis and rheumatoid arthritis. 

Arthritis is the leading cause of disability and work disability in P.E.I., with nearly three out of every five people with arthritis of working age. 

Considering the prevalence of the disease and its significant cost to individuals and society, arthritis should be an issue of great importance to candidates running for office. 

ACE sent an open letter and a survey to candidates running in the Prince Edward Island election. As part of its core government outreach activities and in the spirit of non-partisanship, ACE asks each candidate to share how government can improve prevention, treatment and care in Prince Edward Island. 

The questionnaire asked the following questions:

  • What will your government do to bring a high quality, standardized evidence-based model of arthritis care for all Prince Edward Island residents?
  • What will your government do to introduce patient education and exercise programs, such as GLA:D, that have been proven to significantly reduce hip or knee osteoarthritis symptoms?
  • What will your government do to improve the uptake of biosimilars and increase accessibility to life saving medications and reduce out-of-pocket costs for Prince Edward Island residents living with inflammatory arthritis?
  • What will your government do to improve the healthcare and lives of Aboriginals living with arthritis in Prince Edward Island?
  • How will your government establish better prevention programs and facilitate flexible work arrangements to help reduce the direct and indirect costs of arthritis to Prince Edward Island employers and the Prince Edward Island economy?
  • Will your government take steps to increase the number of rheumatologists and trained arthritis professionals to ensure timely, specialized care for Prince Edward Island patients with arthritis?

ACE will be collecting Party and individual candidate’s responses. Responses will be posted on the Prince Edward Island Election 2019 page as we receive them. 

If you have comments, questions, or concerns about any of the answers provided, please take the time to contact the parties. 

Did their responses help you decide how you will vote? Tell us what you think of their answers. Please contact us by email.

Caregivers’ role in models of care for inflammatory arthritis

Caregivers play an important role throughout the inflammatory arthritis models of care. The nurse at your doctor’s office serves as a first line of contact between you and your doctor. Your partner and family members at home provide physical and emotional support – be it helping you with groceries, taking you to your doctor’s appointment, or listening to your concerns about your treatment therapies. On Caregiver Day, we want to thank you to all the caregivers who are providing care worldwide. Thank you for making a difference in the lives of patients living with arthritis!

Plant with heart shaped flowers to show thanks on caregiver day

What is an inflammatory arthritis model of care?

“Models of care are very important for chronic diseases such as inflammatory arthritis because they facilitate early efficient diagnosis and delivery of holistic health care services, help in the realignment of existing resources to optimize health system efficiencies, and identify the need for new resources. Arthritis patients require an integrated team-based approach to care that includes a number of health care providers over a period of time.”

Dr. Diane Mosher, Professor of Medicine and the Chief of the Division of Rheumatology at the University of Calgary
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The general election in Alberta is scheduled for April 16, 2019. Make your voice count.

What changes 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. According to the Alberta Bone and Joint Health Institute, more than 500,000 Albertans are living with arthritis – approximately one in five. Within a generation, more than one in four Albertans is expected to have the most disabling and life-threatening types – osteoarthritis and rheumatoid arthritis. 

Arthritis is the leading cause of disability and work disability in Alberta, with nearly three out of every five people with arthritis of working age, costing Alberta’s economy $3.3 billion in direct and indirect costs. 

Considering the prevalence of the disease and its significant cost to individuals and society, arthritis should be an issue of great importance to candidates running for office. 

ACE sent an open letter and a survey to candidates running in the Alberta election. As part of its core government outreach activities and in the spirit of non-partisanship, ACE outlines the impact of arthritis in Alberta and asks each candidate to share how government can improve prevention, treatment and care in Alberta. 

The questionnaire asked the following questions:

  • What will your government do to bring a high quality, standardized evidence-based model of arthritis care for all Alberta residents?
  • What will your government do to introduce patient education and exercise programs, such as GLA:D, that have been proven to significantly reduce hip or knee osteoarthritis symptoms?
  • What will your government do to improve the uptake of biosimilars and increase accessibility to life saving medications and reduce out-of-pocket costs for Alberta residents living with inflammatory arthritis?
  • What will your government do to improve the healthcare and lives of Aboriginals living with arthritis in Alberta?
  • How will your government establish better prevention programs and facilitate flexible work arrangements to help reduce the direct and indirect costs of arthritis to Alberta employers and the Alberta economy?
  • Will your government take steps to increase the number of rheumatologists and trained arthritis professionals to ensure timely, specialized care for Alberta patients with arthritis?

ACE will be collecting Party and individual candidate’s responses. Responses will be posted on the Alberta Election 2019 page as we receive them. 

If you have comments, questions, or concerns about any of the answers provided, please take the time to contact the parties. 

Did their responses help you decide how you will vote? Tell us what you think of their answers. Please contact us by email.

JointHealth™ insight – February 2019

Mental Health and arthritis: a complex relationship

In the latest issue of JointHealth™ insight, Arthritis Consumer Experts (ACE) reports on the important relationship between mental health and arthritis. People with inflammatory arthritis are more likely to experience mental health conditions such as depression, anxiety, and “brain fog” than the general population.

This issue of JointHealth™ insight will cover the following:

  • Relationships between depression, “brain fog” and inflammatory arthritis
  • Burden of depression
  • Recognizing and managing depression and anxiety
  • Prevent depression and anxiety
  • Love, sex, and arthritis*

*Please be advised that the content in this section contain graphics of “joint friendly” positions during sex and may not be appropriate for you or others in your household. The graphics are excerpted from the book, “Rheumatoid Arthritis: Plan to Win”, by Cheryl Koehn, Dr. John Esdaile and Taysha Palmer published by Oxford University Press, 2002.

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Digital Health in Canada

In recent years, public and private health organizations in Canada have invested in digital health technologies as a way to improve patient experiences, outcomes and quality of care.

Digital Health Care imagery

According to Valuing Canadians’ Secure Access to Their Health Information and Digital Health e-Services, a study commissioned by Canada Health Infoway, there are four main types of digital health services:

  1. e-View – Secure online platforms that allow citizens to access their personal health information
  2. e-Visit – A patient e-service that allows patients and/or their caregivers the ability to communicate with their healthcare team through secure e-mail or SMS messaging
  3. Virtual visit – A patient e-service that allows patients and/or their caregivers the ability to meet with their health care provider via a face-to-face virtual encounter, through functions such as video calls
  4. e-Rx Renew – A patient e-service that allows patients and/or their caregivers to renew prescriptions

What are the benefits of digital health?

Digital health is beneficial for health systems and Canadians, particularly those living with arthritis. For example, digital health services allow you to:

  • Avoid or reduce in-person visits to a healthcare provider’s office, helping you conserve energy and avoid prolonged periods of sitting in the car or public transit.
  • Increase productivity at work, as you are not taking time off work to see your healthcare provider.
  • Renew prescriptions online and see a history of past prescriptions.
  • Access care faster in rural and remote communities.
  • Access your digital health records, such as lab results. Many people with an inflammatory arthritis who are on a biologic or methotrexate get monthly blood tests. Monitoring these test results helps track disease activity and check that medications are not causing any issues.

In 2018, Canada Health Infoway conducted a national study on the value of digital health technology and found that Canadians collectively save $119 to $150 million every year from their use of virtual care and e-Services. Health systems save $106 to $134 million by reducing administration costs and helping Canadians avoid unnecessary in-person appointments, trips to the emergency room and medical errors.

How can I access these services?

The Connecting Patients for Better Health: 2018 report provides the latest availability, use and citizen interest in accessing their health information online as well as digitally enabled health services (e-services). The report is based on the results of four public opinion surveys conducted between February and March 2014 – 2018. There is an increased demand for digital health services. The number of people surveyed who accessed medical records electronically doubled, from 7% in 2016 to 15% in 2018.

Canada Health Infoway, a non-profit agency sponsored by the federal government, is working towards improving access to digital health services in Canada. Many health care centres are also working independently to provide their patients with online services. Consider asking the receptionist to see if any e-services are available at your healthcare provider’s office. Here are some examples of digital health services currently available in Canada:

e-View

In some provinces, patients have access to their medical records and or lab results online:

Virtual visits

e-Rx Renew

Other digital resources for arthritis

  • Arthritis ID is an app for patients that provides information to help detect, treat and manage arthritis. There is an interactive arthritis screening tool and questionnaire that will help you determine indications of a type of arthritis.
  • JointHealth™ Medications Guide enables patients to have a meaningful conversation with their rheumatologist and pharmacist about available therapy options, side effects and route of administration.
  • JointHealth™ Education courses help people living with arthritis learn to have more meaningful, fact-based conversations with their rheumatologists, other health care team members, families, friends and employers.
  • The Biosim•Exchange is an information hub for consumers to get the latest biosimilars news to help patients learn more biosimilars and their place among inflammatory arthritis treatments.
  • Arthritis Research Canada’s ANSWER: Decision Aid for Patients aim to help you decide if methotrexate is the right treatment option for you. You should use this tool only if you have rheumatoid arthritis and if your doctor has suggested methotrexate as a treatment option.

The 1-minute survey to help launch the Physical Activity Support Kit Initiative website

Share your favourite “go to websites for physical activity information and guidance

A team of health and fitness professionals, researchers and patients partners from throughout BC have worked together to create a repository of online resources to guide and motivate people living with chronic health conditions to be physically active. To help them finalize their soon to be launched Physical Activity Support Kit Initiative (PASKI) website, they’re asking people with arthritis and other chronic conditions to take their 1-minute survey. Share your favourite “go to websites” for physical activity information and guidance. Survey closes February 8, 2019.

Please take the survey here: www.surveymonkey.com/r/8NRWCGR

Follow the conversation online:
Twitter: @PASKI_toolkit
Facebook: www.facebook.com/paski.toolkit.3

Keeping active with arthritis: a key to improved physical and mental health

Much has been said and written about the importance of exercise for our health and wellbeing. However, for people with arthritis, it also can help manage symptoms. While people with arthritis may be reluctant to exercise fearing joint damage, exercise is especially crucial for people living with all forms of arthritis disease. In fact, exercise is a vitally important part of a well-rounded arthritis treatment plan.

For people living with arthritis, pain, body weight, age and lack of knowledge about appropriate types of exercises may be hurdles to getting started on an exercise program. Another barrier is the lack of recommendation and referral for exercise by physicians. A Canadian study of osteoarthritis patients showed that only one third had been advised to exercise by their doctor. However, exercise has numerous physical and mental health benefits and there are no specific exercises that should be avoided by people with arthritis. 

One of the most important benefits of exercise is weight management, which helps to improve body image and can improve the symptoms of arthritis, especially of osteoarthritis. If a person is heavier than their ideal body weight, even a small amount of weight loss can help reduce both the risk of developing certain types of osteoarthritis and the chances of osteoarthritis worsening with age. 

For everyone, exercise helps to improve heart and lung function, but for people living with arthritis, a variety of types of exercise can help to reduce joint pain and control joint swelling. These include:

  • Range of motion exercises help to keep the joints mobile and are also useful for helping to prevent injuries.
  • Weight bearing exercises can decrease bone loss, keep weak joints stable, and reduce the risk of osteoporosis.
  • Aerobic exercises, such as walking, help with weight loss. As well, exercise can help make it easier to fall asleep and to sleep more soundly.

In addition to improved physical health, exercise has many psychological benefits. Pain can seem more pronounced when we are unhappy or upset and exercise can help reduce depression. Additionally, it can improve self-esteem and self-confidence, improve the ability to relax, improve mood and wellbeing, and promote a good body image. Exercise also provides a good outlet for dealing with stress and anxiety. 

Research suggests that most types of physical activity do not cause or worsen arthritis. In contrast, a lack of physical activity is associated with increased muscle weakness, joint stiffness, reduced range of motion, fatigue and overall reduced physical fitness. 

Once a regular pattern of exercise has been established, it is important to maintain this pattern.

In order to get the benefits of exercise, it is vital to stay active.

Research shows that in people with osteoarthritis, once exercise stops, the reduced pain and disability they were experiencing ends.

To ensure that you keep up with a routine of exercising, consider joining a group program or bringing a friend or family member along to motivate you.

Eight ways to get started exercising:

  1. Try to choose a type of exercise, or an exercise program, that you enjoy. It will be much easier to stick to the program if you like what you are doing. Most types of activities are helpful for people living with arthritis, so feel free to do your favourite things such as walking, swimming, golfing, or gardening. Exercise doesn’t have to be strenuous or boring to be good for you.
  2. Community centres can be a terrific resource. Flip through the lists of classes offered at your local community or aquatic centre to find activities that best suit your interests and physical abilities.
  3. You may find that having a partner to exercise with will be more motivating. Research tells us that people are more likely to stick with exercises if they bring along a friend or family member.
  4. Sometimes, having a detailed list of activities and realistic goals will help motivate you, so it may be useful to get a referral to a physical therapist to create an appropriate exercise regimen that suits you and your body. Also, keeping an exercise log can help you and your therapist monitor your progress.
  5. For some, assistive devices such as splints or orthotics may be helpful for protecting your joints while you exercise. An occupational therapist can be a good resource.
  6. Before beginning a new exercise program, it is a good idea to speak with your doctor or health care provider to determine the most appropriate exercise or activity for your needs and capabilities. Also, be aware that during flare-ups it is important not to over-stress and over-work joints, which may cause more pain. For this reason it is important to speak to your doctor about exercise and the types of exercises most suitable.
  7. Try setting a firm goal and then rewarding yourself when you achieve it. For example, set a goal of swimming 5 laps. When you reach that goal, reward yourself, and then set a new goal of swimming 10 laps. Rewards can be anything that is meaningful to you: setting aside time for yourself, treating yourself to a massage or a good book, or going out for a meal with friends.
  8. Acknowledge your effort. Be proud of yourself for taking an active role in your health care.

RA Matters at Work Event continues tour in Toronto and Montreal.

Free Registration: ramattersatwork.eventbrite.com

Register for this free event to hear and learn from inspirational women living with arthritis and leading health professionals! 

300,000 Canadians live with rheumatoid arthritis (RA), and women are affected two to three times more often than men. For many people living with RA, career continuation and advancement can seem out of reach.

To bring attention to the triumphs and challenges of people working with chronic diseases like RA, Women in Biz Network and Eli Lily Canada are partnering on a nationwide series of empowering events called #RAMATTERSATWORK.

Join them for an evening of lively discussion between inspirational women living with arthritis and their health experts. Speakers will share stories of difficulty and triumph while thriving in the workplace, and challenge the negative beliefs and self-doubt associated with living and working with a chronic disease. Stay tuned for panelist announcements! 

Join us and the conversation at #RAMATTERSATWORK

Toronto Event
Date: February 25, 2019, 5:45pm-8:30pm
Location:
Westin Harbour Castle
1 Harbour Square
Toronto M5J 1A6
Free Registration:ramattersatwork.eventbrite.com

Montreal Event
Date: February 26, 2019, 5:45pm-8:30pm
Location:
AC Marriott Montreal Centre-Ville
250 Lévesque Blvd W
Montreal H2Z 1Z8
Free Registration:ramattersatwork.eventbrite.com

JointHealth™ insight – December 2018


Happy Holidays from ACE!

A time to give thanks, reflect on the past, and look forward to the future

“’Tis the season” when our thoughts turn to sharing, caring and remembering; a perfect time to thank all of Arthritis Consumer Experts’ members, subscribers, research partners and supporters for their ongoing engagement and support. Together, we remain committed to helping people living with arthritis across Canada through research-based information and education. 

“When you help a person living with arthritis, you are passing on the message that “you are not alone, we are with you, don’t be afraid.” That message needs to be shared not just during the holidays, but throughout the year.

Today, arthritis is Canada’s most prevalent disease and it’s far more serious than most people realize. Approximately six million adults – one in five – have doctor-diagnosed arthritis. Two-thirds are under the age of 65. Arthritis and musculoskeletal conditions are the leading cause of work disability in Canada. In other words, we are a “big deal” to the health care system and to society.

In 2019, ACE will remain focussed on helping all Canadians living, playing, working and raising families with rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, osteoarthritis and the many other forms of the disease. As it has for the past 20 years, our work will reflect your needs and aspirations. As Canada’s largest and longest running patient-led arthritis organization, we will continue to fight for the rights of people living with the disease; to work with healthcare professionals and governments to develop services and policies that reflect a world as seen through our eyes and experiences; to inform the implementation of models of care to better help patients like us in their disease journeys; and to volunteer and work side-by-side with Canada’s brightest arthritis researchers and knowledge translators.

Over the past two weeks, you’ve graciously shared your wishes as part of ACE’s #MyArthritisWishList social media campaign – sincerest thanks for your participation in this fun and inspiring campaign. Your wishes remind us that when you live with arthritis, that means “every day, all day.” For many of us there are days with no break from pain, stiffness, depression, relationship challenges; the list is long. Yet, despite it all, we rise above from a deep reservoir of resilience.

“The worldwide arthritis community is my hero.”

Every day, I’m constantly inspired by our arthritis community, made up of people who are brave, funny, brilliant, insightful, industrious, and so many other wonderful qualities. People trying to be all that they can be, while also trying to kick arthritis to the curb. The worldwide arthritis community is my hero.

On behalf of everyone at ACE, I wish you joy and peace this holiday season.

Sincerely
Cheryl Koehn
Person with rheumatoid arthritis
Founder and President of Arthritis Consumer Experts


Arthritis Consumer Experts’ Year in Review

In 2018, Arthritis Consumer Experts (ACE) worked to improve the lives of people living with arthritis through education, empowerment and advocacy. With help from the arthritis patient community, healthcare professionals, researchers and partner organizations, ACE submitted patient inputs to CADTH and provincial drug plans, participated in conferences, workshops and webinars, launched JointHealth™ Education Advanced Therapies, provided updates from the American College of Rheumatology and European League Against Rheumatism annual meetings, and advocated on behalf of our community with public and private health policymakers.

Thank you to our members and subscribers for making 2018 one of the best years yet! Here are the monthly highlights from this year and some holiday tipsto get you through the rest of the year.