Getting “Patient Satisfaction” from Arthritis Health Care
To celebrate Arthritis Awareness Month in Canada, in this issue of JointHealth™ insight, we highlight three international surveys that have helped identify gaps in arthritis models of care from the patient perspective. We want to know what you think. Please complete the three mini surveys in this month’s JointHealth™ insight. Your responses will help drive our 2018 information and education programs to support patients and improve the way health care is delivered by the rheumatologists, allied health professionals, health policy decision makers and others who provide care to Canadians with all types of arthritis.
In this issue, you will also:
Read about the model of care for rheumatoid arthritis
Find a Letter to the Editor template to increase awareness about arthritis in your community
Arthritis Consumer Experts (ACE) is celebrating Arthritis Awareness Month with the #ArthritisMadLibs Twitter Project. The goal is to help others understand the impact of arthritis and make informed decisions about the development of new arthritis programs that will benefit patients and their caregivers.
#ArthritisMadLibs is a chance to re-write the arthritis patient story during Arthritis Awareness Month – one word at a time. On the Labour Day long weekend, the #ArthritisMadLibs hashtag garnered 329.892K impressions, 135 Tweets, 24 participants – averaging 2 Tweets per hour and 6 Tweets per participant.
Since September 1, #ArthritisMadLibs had 910.103K impressions, 379 Tweets, 46 participants – averaging 1 Tweet per hour and 8 Tweets per participant. We thank the patients, health care professionals, patient groups, and researchers who have engaged with us thus far. Our engagement rate on @ACEJointHealth’s Twitter account is at an impressive rate of 2.8% engagement rate (34 link clicks, 179 retweets, 235 likes, 138 replies) – a significantly high engagement rate compared to the average Twitter engagement rate of .7% for the top 25 brands on Twitter. Social media is a tricky business and who you follow, who you have following you, and how many followers you have can affect these statistics but for a grassroot patient organization, we are pretty proud of the #ArthritisMadLibs and its participants and supporters!
Here is a summary of the #ArthritisMadLibs (thus far) and some of our favourite Twitter moments:
#ArthritisMadLibs is a chance to re-write the arthritis patient story during Arthritis Awareness Month – one word at a time.
Arthritis Consumer Experts (ACE) is celebrating Arthritis Awareness Month with the #ArthritisMadLibs Twitter Campaign. The goal is to help others understand the impact of arthritis and make informed decisions about the development of new arthritis programs that will benefit patients and their caregivers.
Mad Libs is a word game where key words in a sentence are left intentionally blank for others to substitute with their own words. As we continue to learn from the global arthritis patient surveys, communications is critical between patients and their doctors, rheumatologists, nurses, pharmacists, friends, colleagues and researchers. #ArthritisMadLibs is a chance to re-write the arthritis patient story – one word at a time.
During Arthritis Awareness Month, ACE will be tweeting daily with 5 themed Mad Libs. The themes are patients, work, family and friends, healthcare professionals, and animals. To participate, please follow hashtag #ArthritisMadLibs on our Twitter account @ACEJointHealth. If you do not have a Twitter account but would like to participate, you can follow our Twitter feed on the Arthritis Consumer Experts website (www.jointhealth.org) and email your answers to firstname.lastname@example.org. To drive the campaign, please like, retweet, and reply on Twitter. Arthritis Broadcast Network will be providing a weekly summary of the Mad Libs.
The Qualman-Davies Arthritis Consumer Community Leadership Award
Do you know a person with arthritis who has, or is, providing leadership in the community and deserves recognition for their valuable volunteer work? We encourage you to help us celebrate their contributions by nominating them for the Qualman-Davies Arthritis Consumer Community Leadership Award.
The Qualman-Davies Arthritis Consumer Community Leadership Award was created in 2014 to recognize one person’s contributions to helping Canadians living with the disease to be heard in decision-making processes that affect millions. That’s what Ann Qualman and Jim Davies did as early pioneers in arthritis advocacy in Canada. Their tireless and selfless efforts helped millions of Canadians.
To submit a nomination, please follow the four steps listed below.
Obtain the prospective nominee’s consent to be nominated prior to submitting this form.
The application deadline is August 31, 2017. The winner and their nominator will be notified by the adjudication committee chair by September 8, 2017. The award will be bestowed in person at the Arthritis Alliance of Canada’s 2017 Annual Meeting Reception taking place on Thursday, October 26th in Vancouver, British Columbia (award recipient’s expenses will be covered).
Arthritis Consumer Experts’ 10th Annual Arthritis Medications Report Card and Medications Guide: The changing landscapes of reimbursement for arthritis medications in Canada
Arthritis Consumer Experts (ACE) has released its 10th Annual JointHealth™ Arthritis Medications Report Card and Medications Guide – the reliable, quick reference tool to help you evaluate where your province ranks in terms of providing reimbursement for medications to treat inflammatory forms of arthritis.
Commenting on the changing landscape for reimbursement of arthritis medications, ACE President, Cheryl Koehn stated: “Any new pharmaceutical policy that promises to deliver significant drug plan savings must do so without compromising patient safety and efficacy. ACE has also consistently advocated that any drug plan cost savings related to changes in policy that affect arthritis medication reimbursement access should be reinvested back to drug formulary budgets to support the listing of new arthritis medicines and other non-medication related initiatives to improve models of arthritis care such as creating rheumatology nursing billing codes.”
The JointHealth™ Arthritis Medications Report Card and Medications Guide gives you information on the most commonly prescribed medications for inflammatory types of arthritis, such as rheumatoid arthritis, axial spondyloarthritis, psoriatic arthritis or juvenile idiopathic arthritis.
The Big Sick film highlights writer’s real-life battle with adult-onset Still’s disease. The Big Sick film is based on the real-life courtship between Silicon Valley actor Kumail Nanjiani and his wife, writer Emily V. Gordon. In the movie, Zoe Kazan portrays Gordon onscreen, and Holly Hunter and Ray Romano play her parents.
The romantic dramedy portrays how the married co-writers dealt with the extremely rare form of arthritis that brought them together 10 years ago. Back then, Gordon was a therapist in Chicago and has been together with the then standup comedian Nanjiani. Gordon’s initial symptoms were similar to a cold. She thought she had a really bad cold or pneumonia. She fainted in the middle of getting an X-ray and was rushed to the emergency room.
Gordon was eventually diagnosed with adult-onset Still’s disease (AOSD), a rare form of arthritis that can shut down major organs if untreated. Adult Still’s disease is characterized by high fevers, inflammation of the joints, and a salmon-coloured rash on the skin. It can either be chronic or episodic (having flare-ups a few times a year). In children, this disease is known as systemic onset juvenile rheumatoid arthritis; when it occurs in people over age 15, it is known as adult Still’s disease. In Gordon’s case, AOSD affected her lungs, causing water to accumulate in her lungs. As a result, she had trouble breathing.Continue reading →