Instilling hope and wellness in chronic illness, why I involve myself in patient oriented research and how you can too.
Since joining the patient advisory board (APAB) for Arthritis Research Canada in September 2018 I’ve seen how my lived experience can benefit research, which I was hesitant for over a year before joining because I didn’t think I would have anything to offer.
I was wrong. Very wrong.
I have the best thing I could offer to a research center, lived experience.
It was my social media channels that inspired other rheumatoid arthritis patients to participate in a study which I later found out is one of the most difficult parts of these studies – recruitment.
Being involved in research instills hope as a patient living with a disease that often goes under the radar to the general public as serious and debilitating. Research studies are one of the most powerful ways for scientists to find answers to diagnose, treat and help people with arthritis better manage the disease.
I’ve learned my voice and my disease matter since joining in on the research and especially on their patient advisory board.
The Arthritis Patient Advisory Board (APAB) is comprised of volunteer advocates with arthritis who bring personal experience and arthritis knowledge to research decision making at Arthritis Research Canada. Their goal is to ensure the patient perspective is represented on research matters related to prevention, treatment and self-management of arthritis. Individually and collectively, they communicate research information and findings to arthritis patients, professional organizations and the general public.
The ACR/ARP Annual Meeting is the premier rheumatology research and education event of the year. Last year’s meeting boasted 450+ educational sessions and workshops, 3,000+ scientific research studies, and 15,000+ attendees from around the world.Excited and honored to be representing Arthritis Research Canada’s patient advisory board.
What is Patient Oriented Research?
According to The Canadian Institutes of Health Research
Patient-oriented research refers to a continuum of research that engages patients as partners, focuses on patient-identified priorities and improves patient outcomes. This research, conducted by multidisciplinary teams in partnership with relevant stakeholders, aims to apply the knowledge generated to improve healthcare systems and practices.
What can patients contribute and why is it needed?
Patients bring the perspective as “experts” from their unique experience and knowledge gained through living with a condition or illness, as well as their experiences with treatments and the health care system. Involvement of patients in research increases its quality and, as health care providers utilize research evidence in their practice, increases the quality of care. “Engaging patients in health care research makes (investments in) research more accountable and transparent, provides new insights that could lead to innovative discoveries, and ensures that research is relevant to patients concerns. The international experience with engaging citizens and patients in research has shown that involving them early in the design of studies, ideally as early as at the planning stage, leads to better results. By encouraging a diversity of patients to tell their stories, new themes may emerge to guide research. Patients gain many benefits through their involvement including increased confidence and master new skills, access to information they can understand and use, and a feeling of accomplishment from contributing to research relevant to their needs.
Patient-oriented research is ultimately aimed at achieving benefits that matter to patients:
Improved access to the health care system
The right treatment at the right time
Being an active and informed partner in health care
Quality of life that is tied to patient-oriented outcomes
Make a contribution to improving the cost effectiveness of the health care system
What type of research have I involved myself in?
Not all research is medicine based. I’m currently involved in studies to do with mental health issues for inflammatory arthritis, strength training in rheumatoid arthritis and how wearing a fitbit helps me become more active and manage my arthritis better. I am always learning more and more about my illness to combat it better.
What have I gotten out of my involvement in research?
Friendships and support, hope for a better tomorrow, invited to prestigious events and conferences, better disease management and education, something to do while on disability, sometimes you get paid or get to keep things like a fitbit. Most importantly though knowing I’ve helped others by doing what I do.
Why you should involve yourself in patient orientated research?
Your voice and disease matter.
The best way to fight disease is through educating yourself and others – your lived experience with arthritis to researchers is invaluable.
Research matters and saves lives. There can be a better future for those living with arthritis and the future generations diagnosed.
Where can you join in patient oriented research?
Thurston Arthritis Research Center
John Hopkins Arthritis Research Center
Many major universities have a health science department. Ask your rheumatologist how you can get involved in local research, they’ll be able to provide you with where to go.