Session Information
Session Type: Patient Perspectives Poster Session
Session Time: 12:00PM-2:00PM
Background/Diagnosis: I am a woman, 60 years old who has lived with difficult-to-treat Rheumatoid Arthritis for 23 years. When first diagnosed with RA, there were constant tests, doctor’s appointments, stress management classes, education classes, pain and illness to deal with as well as 2 young boys who needed their mother to be there to enjoy life with them.
My best was saved for my boys but could not do the everyday things we had done in the past. We had to sell our house as it was not disability-friendly and there were financial needs relating to my disease. It took a year to diagnose and I had trouble with every med that was given to me; there was little efficacy as well.
When biologics came into play, things were a little better for a couple of years, although I experienced constant infections. Then a severe reaction to a TNF receptor left me with neuropathic damage to my right leg that was not able to be reversed. The result is permanent pain on that side. It has affected my balance, gait and concentration.
Treatment: I am a patient fully engaged in several research teams from the point of hearing about a research idea and guiding the direction of research, to lay summaries and dissemination, and every phase of research in between. My 5 years since joining the Arthritis Patient Advisory Board has seen participation in quality of life research projects testing activity monitors, health journals and medicine adherence focus groups. I hoped this would give me a way to improve my life and give me new ideas about my RA. The environment at Arthritis Research Canada is an amazing one. Everyone from the scientific director to the secretaries to the trainees understand my disease and are flexible as well as encouraging. Patient engagement on research is a given here – not an exception to the rule.
Maintenance: See table 1
Table 1
|
Research Study |
Goals |
Difference to Me |
|
Health Ethics
|
Focus group on social media & ethics |
Start to my journey. Made me realize how much of new technology I was not using. I.e.: fitness trackers, wellness apps |
|
Answer 2
|
To help people with decision making around Biologics |
Great teaching tool about decision making – helped with video and with testing product. – became aware of other’s concerns with meds. -could also check to see some of the available meds before talking to my rd. |
|
Health Journal |
To test a health journal testing joint count, depression screening, reporting to rheumatologist. |
Since using this I have been more aware of symptoms and have gone back to record my past meds and reactions/side effects. |
|
Fitbit/Fitviz/ OPERA
|
Using a fitness tracker, combined with a physio consultation & now being tested as a complete program with Health Journal |
This has been a game changer in my health. -Aware of how many active minutes of exercise, how closely or how apart they are, activity every hour. – invested in as I have been in the program throughout the testing/research period, from testing the product to critiquing the almost finished software changes. |
|
Medicine Adherence focus group
|
Focus group on how people both remember to take and why they don’t take medications for RA |
Despite reading about this; I had no idea that people had so many reasons not to take and fears around medication -have been extra vigilant about my own meds especially compliant with vitamins |
|
Framework for Patient Engagement in Research |
To develop a framework for Patient Engagement in Research that will work not just in the Arthritis field but in any health field |
-involved in from the beginning to dissemination. It has been true Patient Engagement in Research and is the project I am most proud to be in -have co-presented the poster at ACR2017 -have assisted in developing the statements for the framework, wording of research paper, disseminated the information – have seen the process from start to finish which has been most important |
|
PRECISION: Preventing Complications from Inflammatory Skin, Joint and Bowel Conditions
|
Sit on the consumer core of the panel
|
-Through PRECISION I have expanded my medical vocabulary. This has enabled me to understand better the posters at ACR and at the Canadian Rheumatology conferences – As part of the consumer core have heard of new discoveries as the team has researched them. -alerted on health problems such as potential COPD in the future -it has given me great hope as research by Dr. Diane Lacaille has shown that the lifespan of people with RA has actually improved over time. These are simply 2 discoveries out of many that have come out of this group |
Quality of Life:
It has been a long journey getting to where I am now. Results of Being a Patient in Research are:
-a team member on research projects
– an improvement in my fitness level,
– vitamin use is optimal
– self esteem is higher than ever
– improved communication with my doctors by knowing medical terminology and treatments ahead of my appointments, and by having knowledge of new research findings to share with my rheumatologist and general practitioner from conferences and the research teams
– very supportive community in Arthritis Research Canada’s Arthritis Patient Advisory Board
– attended ACR conferences and Canadian Rheumatology Conferences since I have been on the advisory board
– have a vested interest in the health research and pay very close attention to stretching my health knowledge and adherence. I know my quality of life has improved and my doctors acknowledge this.
– Depression has decreased.
My quality of life and the contributions I have made to others’ lives is a result of being a Patient Engaged in Research.
To cite this abstract in AMA style:
English K, Macdonald G. Improved Quality of Life with Patient Engagement in Research [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 9). https://acrabstracts.org/abstract/improved-quality-of-life-with-patient-engagement-in-research/. Accessed .« Back to 2018 ACR/ARHP Annual Meeting
ACR Meeting Abstracts - https://acrabstracts.org/abstract/improved-quality-of-life-with-patient-engagement-in-research/