Patient Voices that Take ACR from Theory to Reality
November 12, 2019
Today during #ACR19, our Patient Partners were able to connect with rheumatologists and researchers about the ways that their stories can inform their work. Here’s the daily dose of what they learned & why it matters for people with arthritis.
Perspectives on Patient Engagement in Research
Patients and their caregivers are the experts in their experience – and that expertise is valuable to providers and researchers as they investigate new therapies. Today, we got to hear from excellent speakers about the value of sharing our patient perspectives – and the many ways that we can be empowered to tell our stories.
“True patient engagement is providing patients an opportunity to help you BUILD the box, not just check it.” – Corinne Pinter
We learned that it is not just providing a patient testimony or sharing an idea about how things can be better. Sharing our stories can be as simple as taking a survey, like the Arthritis Foundation INSIGHTS assessment. It was so inspiring to hear about the more than 20,000 INSIGHTS assessments that the Arthritis Foundation has collected and the ways that that information can help our doctors deliver care.
The more that we are able to share our stories, the more we are able to help others understand why patient engagement is so important.
“I’ve seen my story make a difference for researchers through the relationship that the Arthritis Foundation has with the PARTNERS like CARRA & PR-COIN.” – Kate Kuhns
By: Corinne Pinter and Kate Kuhns
Track Your Wonder Drug with a Wearable Device
Exercise: the Wonder Drug
There’s a lot of research to support physical activity as being one of the most beneficial treatments for people with all types of arthritis. I learned the research shows the most benefits for those who exercised longer than 3 months. It helps to reduce inflammation, pain, stiffness and fatigue in many patients. For people with osteoarthritis like me, if you’re overweight, losing the extra weight is so important. Another motivating reason to exercise is the 40-60% increased risk for cardiovascular diseases when you have a rheumatic condition. These are the reasons we’re at a higher risk for cardiovascular issues:
- Being overweight
- Systemic inflammation
- Age, pain, sleep (not enough sleep, poor quality sleep)
- Lack of physical activity support
One of the researchers discussed High Intensity Interval Training (HIIT), which peaked my attention. HITT combines vigorous activity of high intensity training, but not high impact, with short intermittent breaks to rest. This type of workout showed similar physiological benefits compared to less intense exercise with a long duration. The research showed changes occurred in as little as two weeks. I can attest to the benefits of HIIT personally.
“I started doing HIIT training myself about a year ago. That along with proper diet helped me to lose weight and maintain weight loss to the point where I can have a more active lifestyle.” – Nick Steen
Wearable Technologies Can Help Increase Physical Activity
Another session I attended also discussed the importance of physical activity when you have a form of arthritis. Having wearable technology helps to hold ourselves accountable to maintaining physical activity levels. One of the researchers reported that the wearable devices (like Fitbit or pedometers) helped to increase the number of steps that people took and increase their activity levels. It’s a good way to actually change behaviors when it comes to exercise.
By Nick Steen
A Public Approach to Arthritis Pain
By Stacy Courtnay
There’s growing attention to chronic pain in public health and this is good for people living with arthritis and rheumatic conditions. This session really spoke to my passion in raising awareness about how hard it can be to live with rheumatoid arthritis. We need to speak up and educate others on arthritis and how debilitating it is. The more awareness we can bring, the more funding we can get and this can bring us closer to a cure.
“This is so important to me and our mission at the Arthritis Foundation. Do not suffer in silence! Share your story.” – Stacy Courtnay
Stay tuned for more highlights from the Arthritis Foundation Patient Partners as they wrap up their time at the American College of Rheumatology annual meeting. Check out them out on Twitter, Facebook and Instagram as they share information throughout the day while they represent your patient voice.