By: Dawn Richards

As I step back from my role in CAPA’s leadership team, I wanted to share some of the things I’ve learned and thought about a great deal over the last few years. My experiences in the arthritis community began in late 2006 with my diagnosis of rheumatoid arthritis. What a whirlwind of learning about disease communities, how policy works, and how ultimately patients carry the burden more than anyone else in the ‘system.’

I’ve written things in a way that seem to make sense to me – starting with what I’ve learned at a personal level, and then moving to community, research, and a policy and systems level.

Personal

I would not be where I am in my personal and professional life without arthritis. It has profoundly shaped my own career, and the friendships I have been gifted are beyond words.

Arthritis has helped me see clarity around my family and my circle, my own health, what’s important to me personally, and where I need to improve and grow. It’s clear to me now that I need to step back in some of the spaces that I’m in – to allow others the opportunities that I have had, or that still come to me and that I can pass on. Others deserve to be in these spaces and have their voices and perspectives heard.

Advocacy work can take a personal toll in a world continuing to be flooded with misinformation and disinformation, and divisiveness on so many levels.

Community

Disease communities can be incredible. There are so many people who are willing to help you – especially in the rheumatology community: other patients, family members, researchers, allied health professionals, rheumatologists, and more. I have learned so much from many people, from their different perspectives and their knowledge they have shared and continue to share.

There are so many people who give time to or work in the arthritis community. There are very small organizations run by dedicated, passionate, and often exhausted and barely resourced patients. I’d argue these are the organizations that know the most about what it’s really like to live with arthritis – through a very personal lens. Other organizations are also important, and they have strengths in helping fund research and putting out excellent general resources about diseases.

Disease communities can be competitive. After all, people are people. Sometimes that competition is healthy – other times it’s hurtful. Sometimes it can feel like people don’t see we’re all working towards the same goal when there are limited resources.

Many patients paved the way before I became an (accidental) ‘advocate’ – in arthritis and in other disease communities. I have learned so much from them, and I have friendships that would not have been possible without my own diagnosis

Research

I’ve seen the concept of patients as partners in research come a long way in 20 years. There are so many local, national, and international initiatives in rheumatology that have been pioneering here. It’s great to see more disease areas coming into the patient partnership in research space.

I’ve been grateful to contribute to the patient partnership in research space, by bridging my own training as a researcher with my own lived experiences as a patient. It’s extremely rewarding to see and to contribute to resources being built, some that are not specific to any one disease or condition and that can benefit the research and patient community as a whole. I know there is still a long way to go here, but I’m generally hopeful.

Policy and Systems

I’ve always found it fascinating that patients (i.e., taxpayers) are not viewed by our systems as the group to which those systems and policy-makers should be accountable. Instead, provinces and territories are seen as ‘clients,’ or physicians are seen as ‘customers.’  Maybe it’s because patients are too far removed, but remember that we are the ultimate ‘payer.’

While a number of organizations, including those funded by government, signal they want to hear from patients to inform policy development and healthcare, I see room for improvement. In many of its current forms this wish or ask places the burden on patients, caregivers, and family members no matter how well-intended the ask or who makes the ask.

I see the tension where experiential data is low on the ‘hierarchy of evidence’ or not seen as a true form of evidence at all. I’ve seen burdens placed on patients and patient organizations to collect and bear their truths about disease and healthcare experiences, and not been clear about to what end.

I see the bureaucracy and inefficiencies in our systems given how healthcare is funded and how some pharmaceutical policy is set by individual provinces and territories vs. at the national level. I wish we were more creative and authentic about engaging users of the system to help build better systems or identify and work on the inefficiencies. At the same time, that can often be said about the front-line workers in these systems – they see things first hand and want to make a difference, too.

It can be hard to fight for change when working with policy- and decision-makers who have excellent benefits packages, with access to and costs covered for many medications and other items our public system doesn’t provide for us or cover for many of us.

In some cases, I’ve seen and continue to see organizations truly listen to patients and take their input into account and into policy decisions and policies. In other cases, I’ve seen ‘window dressing’ and ‘hand-waving’ that doesn’t convince me that our voices are making or will make a difference.

Many people in Canada take for granted that the healthcare system and policy-makers will always take care of them. If you pay attention to healthcare policy (which is usually after you’re affected somehow in a health capacity), you understand that it is difficult for our current system and bureaucracy to do. I still believe in our system and that continuing to improve it is worthwhile. In fact, I see a lot of our very good public system being chipped away at slowly by efforts to privatize it. I wish more people thought about and understood the value of our public health system (and yes, there’s research and data on the quality and outcomes of public vs. private care).

Finally, I wish people thought more about how people make systems. Systems simply do not exist on their own without people. We have power to change systems – and while that may be difficult and require a great deal of effort, it’s people who make systems and who can affect that change.

Final thoughts

I really can’t emphasize enough how much patients, caregivers and families can be burdened through this all. Our efforts are tireless. Our work rarely paid. We show up day in, day out, no matter what state our disease of life is in, and not knowing what the next day will bring, to continue to push.

Progress and change are slow and this work can take a toll. Some patients I know have been doing this for decades, others for a few years. Their motivations are always the same – to see change happen so others don’t have to go through what they have. I give kudos to all of those individuals, and I wish others saw their hard work and dedication like I do.

I look forward to continuing to contribute to CAPA in new ways. As I learn more about myself and reflect, I know I’m better suited to be in the background, supporting others to be out there as advocates, using their voices and sharing their experiences. The time seems to be right for me to step back so others can step in, offer fresh ideas, and shine.

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