I received an invitation to speak at a Doctors of BC Shared Care symposium on how to effectively engage patients.
This is my presentation.
Patient partners can play a critical role in research and health care improvement. Hear a perspective from experienced patient advocate, writer and research partner Eileen Davidson on how to effectively engage patients
Hello, my name is Eileen Davidson and I am here today to talk about how to effectively engage patient partners like myself.
First these are my disclosures, various times I have received an honorarium for my expertise, experiences and time as a patient partner.
I will be going over two times patient engagement changed my life and the who, what, why, when, where and how of patient engagement from the patient perspective.
Who am I
Around 23/24 I started to complain of hand and wrist pain. I worked as an esthetician and anytime I brought this up to a physician I was told to wear a wrist brace and reduce the amount of massage I did at work. I tried this but over time the pain got worse and it spread to other areas of my body.
At 26 I had a child. My pregnancy was not easy, I experienced a lot of swelling, fatigue and pain. After the birth of my son, I expected these discomforts to go away. They did not, in fact they only got worse, especially when I tried to return to work.
My pain was however brushed off by my family physician, which is not uncommon for the reasons this happened to me. I was young, looked healthy and I was struggling with postpartum depression, so it was all in my head, I just needed to exercise and lose the baby weight.
My pain got so bad that during each shift at work I would be in the back room in tears. A coworker suggested I look into rheumatoid arthritis. My heart sank, I always knew of this disease, my aunt had it. She was confined to a wheelchair and had disfigured hands, could this be what was happening to me? I went to Doctor Google to see if my symptoms matched up, they most certainly did. That is when I made the decision to ask my doctor to run a rheumatoid arthritis blood test.
It was pretty quick after that I was diagnosed with seropositive rheumatoid arthritis. I was shocked, I didn’t even know I could get arthritis before my 30th birthday. That was also the time I went on long term disability. To add more salt to the wounds, my aunt with RA passed away the same week of my diagnosis.
The thing is, I should not have had to ask for that test myself, my pain should have been explored by my physician at that time when I first brought it up but no one bothered looking further into what I was saying.
This wasn’t my first experience with a doctor being dismissive of me though.
When I was 17 I was told by my family physician I had clinical depression. She gave me a card to a psychologist and told me if I lost 10 lbs, I would be fine. I spent the next decade and a half extremely depressed, I blamed myself for how I felt. I carried those emotions letting them weigh me down until I was in my 30s.
These experiences of when the medical system failed me are a critical reason why I became a patient advocate. To make change.
What I do
I went from being devastated to a well known patient leader. How did I do this? While you may have years of medical school or in university, I have years of lived experience with chronic illness.
And now six years of being a patient partner, writer, speaker and advocate.
I wear many hats in my role as an advocate now:
- I’ve been published over 100 times. My blog and social media channels under Chronic Eileen have been named for a number of years as one of the best arthritis blogs and channels to follow by a number of the top health websites. When you google arthritis advocate, it’s my photo that comes up first and the most.
- My story or words have been featured many times in the media – including CNN, Global News, CBC, Women’s Health, Inked Magazine and more.
I volunteer a lot of my time to organizations that mean something to me and I feel I can make a difference, these include:
- The Arthritis Society – Ambassador and Western Council Member
- Arthritis Research Canada – Arthritis Research Canada Patient Advisory Board Member
- Canadian Institute of Health Research – Institute of Musculoskeletal Health and Arthritis – Patient Engagement Research Ambassador
- Doctors of BC Shared Care Chronic Pain Advisory Committee – Patient Partner
- The International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) – Patient Partner
- The Arthritis Social Hour – Support group host for people living with arthritis at the Mary Pack Arthritis clinic in Vancouver.
Today I am here to talk to you about the value of engaging patients and in my own words how to do this effectively.
I will be going over two projects I have been part of that are in my opinion perfect examples of patient engagement and how research participation changed my life as someone living with chronic health issues
At the time of my diagnosis I struggled to walk the six minutes it took for me to get from my house to the train station. I could barely walk around my local grocery store without pain or feeling out of breath. I would need to rest for an hour just after taking a shower.
I wanted to exercise, but found it incredibly painful and I couldn’t shake off the debilitating exhaustion I was experiencing. However I made my way into a local community center and started on the elliptical because I read on the Arthritis Society website it was low impact, good for people with arthritis.
I tried the help of personal trainers or physiotherapists who were closest to where I lived, but I wasn’t finding the answers I needed to know about exercising with RA. I felt like the exercise professionals I went to did not really understand my disease. No one was addressing issues like fatigue, brain fog or depression, huge barriers I experience when it comes to exercise, and daily living with the roller coaster that is the chronic disease journey.
That was until I joined the Arthritis Research Canada patient advisory board and participated in two studies about exercise with RA.
OPERAS is an online platform combining symptom/disease activity monitoring and physical activity counseling developed by Dr. Linda Li and her team of researchers from Arthritis Research Canada.
Tracking my health and having charts of my daily activities and symptoms gave me a deeper understanding into my diagnosis of RA. I saw how sleep was affecting my fatigue the next day or when I did too little and how that would increase my pain. I also saw how my hormones affected my RA or when my medications started to wear off or start working.
Because I was given a fitbit for participating in this study, something I could not afford while on disability, I also got visual proof that one day I walked the entire sea wall in Vancouver. Something I never thought I could do after my diagnosis. I walked over 26,000 steps that day.
The other study I was part of from the beginning was Dr.Jasmin Ma’s IStart study which aimed at increasing strength training in those with rheumatoid arthritis because a staggering 86% of RA patients do not strength train but the benefits to us are critical.
I tried personal trainers, physiotherapists near my house or exercise classes, none really worked for me as someone living with RA. My concerns as someone with RA were not addressed or I was given work out plans for someone with joint problems like me. One time I went to a fitness class at a local community center that described the class as “accessible for all’ but when women who were much older than me could keep up easier than I could I felt pretty bad about myself and my condition.
But with the involvement of this study and toolkit development, I can strength train effectively for my pain and with confidence. I was blessed with a kinesiologist and arthritis researcher coming to my house and my gym to show me how to properly strength train and tear through some of those barriers that are unique to someone living with my condition.
Knowing how to exercise effectively and properly with RA has been critical for the self management of my disease. I’ve been on over a dozen medications, currently more than likely starting a new one soon as my current one is failing me, but the thing is, exercise hasn’t failed me in making me feel better with this ugly disease.
Not only was this study incredibly useful for the understanding of my disease, but it taught me a significant amount about well done patient engagement mainly because I felt like a valuable part of the team. It has been 5 years I’ve been partnering with Dr. Ma and Dr. Li, in that time I
not only learned so much about my condition, but I have written articles about my involvement in these studies, presented at The American College of Rheumatology conference with both of them in different cities, wrote an abstract about my participation, and each year I present to physiotherapy, occupational therapy and kinesiology students about my disease. I have even hosted an exercise class for arthritis patients in my arthritis support group where both Dr. Ma and Li joined as my guest instructors.
Why you should involve patients
Involving patients will give you a true insight into what is really important to us. Some conditions may have unique needs while others may have similarities. You won’t know unless you ask us. Without involving patients in the development of our care would be like doing a puzzle without a photo to know what you were putting together.
Patients can be engaged with researchers or organizations across the research and healthcare improvement cycle. Some examples of ways I’ve been involved include:
- Aiding with grant applications or supplying letters of support
- Building a stronger rapport with patient communities
- Providing input into surveys, patient information sheets, resources, or other materials
- Provide input to steering committees that set guidelines or identify gaps
- Recruiting participants, I do this through my social media channels totalling around 18,000 or the arthritis groups I am on facebook with even more participants.
- Providing input related to knowledge translation and evaluation.
- Identifying novel opportunities to share research findings like writing in Creaky Joints or Healthline and my arthritis support group, the Arthritis Social Hour.
I can do all this because I have been mentored, engaged with and invited to the table as an equal partner. Involving your patient partners more creates stronger advocates who can do more.
I have this advice for you all today on how to effectively engage patients in just about any capacity. While my experience is mostly in research, this can be transferred elsewhere.
Rule number one when engaging patients the most effective thing you can do for us is listen to us and include us.
Engage us from the beginning and through other steps along the way. We can help guide you to make sure this is relevant to the patient needs and also in plain language so all of us can understand it. If you have a team meeting about the project or are ready to move into another step, invite your patient partners to check your work or participate in the discussion or even just be in the know. Even if we don’t have much input some steps along the way, involving us can teach us a lot of useful information that might be useful down the road as an advocate or partner in your project. Some meetings I may say nothing but I’ve soaked up a lot of information.
Quite often I am the only one without a medical, research or university background, including probably this event right now. Many of the patient partners that are being engaged are retired, white women in their 60s, often with a university or medical background.
I have noticed how valuable my expertise and experience is, especially as someone who is disabled and low income.
I used to be pretty intimidated joining advisory boards or committees because of my lack of experience or education compared to everyone else in the room, but with some great mentorship, hours of participating in research and advocacy roles, I’ve grown to be more confident as a patient partner and can see the value that I bring to the table.
More than one patient perspective
As many perspectives as you can find if you want to make your program or study work for the majority of your service users or target audience. Put the work in to find a diverse range of patients from different backgrounds.
Another reason to involve more than one patient is because I am chronically ill. Chances are I can’t always be present. Chronic illness is bumpy, you should expect that your patient partners are not available all the time and honestly, living with a chronic disease is a full time job to manage. There have been weeks where I spend upwards to 30 hours a week in meetings. Not including my content creation time.
If I can describe when patient engagement has gone wrong for me it would be when I can tell I am there to just tick off a box on someone’s to include list for some requirement or to get easier funding. Diversity, inclusion and equity is a hot topic right now but don’t just talk the talk, you gotta walk the walk because actions speak louder than words.
I can tell when I am experiencing tokenism or someone is throwing power dynamics at me. I can also tell when I am not respected or being listened to. I’ve been part of a steering committee once where a researcher said the patient perspective is unreliable. I can see when someone doesn’t make eye contact with me or ignores my presence in the room. I am sick, not dumb.
Sometimes I just want to shout out that we are not revolving doors. Don’t treat patients like a speed dating event – take time to get to know us and our journey with disease. There is a good chance our comfort levels will increase over time as we get to know the team, process or project. You may be surprised by what you learn from us along the way.
Summarize what we said and where our input added valuable contribution because this can be really difficult for us to see at first. Ask us more, not just about our conditions because we are a person living behind that disease but you may find out more about our health if you dig deeper and get to know us as a whole person.
Use reflective listening, make eye contact, don’t ignore us. It is hard to want to volunteer or take part in any capacity with an organization that I do not feel respects me or appreciates me or I have any actual input with.
Give us a timeline of the project and outline what you need from us. Provide us questions or an agenda beforehand. I am going to be more insightful if not put on the spot because I could be having a bad cognitive dysfunction day.I really appreciate the time to prepare my thoughts and write them down. Sometimes the questions also give me content creation ideas.
Allow enough time for your task. The suggested amount of time is 2 weeks, however if it is a big ask, give a month. Don’t be surprised if we take longer or need extra time, like I said previously, chronic illness is bumpy. This is one reason why you should engage more than one patient partner.
Give us a key contact to the team, someone we can feel comfortable with to ask questions when we need to get a hold of someone with the project.
Keep it simple
Canada is rich in multiculturalism, I highly suggest including people whose first language is not English and to publish in multiple languages. Access to health information is not accessible for all Canadians.
You want everyone to be able to follow along and understand what’s going on. I’ve heard different recommendations on what reading level it should be, which is between grade 6-9. Don’t assume, actually check before releasing anything to the general public.
Make things physically easier for us.
Use visuals, recordings or a variety of ways to provide us information. As someone living with chronic pain and fatigue, reading on the computer can be incredibly painful. The opportunity to listen or watch helps big time.
Be aware that lived experience may come with a background of trauma. Participants may experience heightened emotions or negative memories while participating. Provide a safe, non-judgmental space for us to express ourselves, especially when we are sharing our most vulnerable details. If you are engaging patients I highly suggest knowing some grounding exercises if a patient partner ever gets overwhelmed or triggered by your questions.
Compensate us fairly.
Pay your patient partners for their time, experience and expertise. Why? Because not paying them based on their healthy status is discrimination.
Being a patient partner who gets paid for their participation has helped me put food on the table for my kid and I or buy him Christmas presents. If you don’t know this, the provincial and federal disability pay is below the poverty line. Inflation is also really hurting us when it comes to affording to try and live healthier.
Educate and nourish your patient advocates – Watch them grow and evolve
The more you engage your patient advocates, the stronger the patient partner becomes. I am proof of that. I would not be standing here today doing this presentation or doing all that I get to do as an advocate if it was not for the researchers or organizations who believed in me and mentored me when I started my advocacy journey.
Want to learn more about effective patient engagement? These resources are great for researchers, clinicians and patients.
- PERA modules
- BC Support Unit
Where to find patient partners
- Reach BC
- Patient Voices Network
- Organizations and Health Authorities – Many have newsletters or social media channels (Arthritis Research Canada, Canadian Arthritis Patient Alliance, The Arthritis Society) – what are the organizations centered around your cause?
- Posters at Clinics or speciality pharmacies, talk to your colleagues
- Hashtags on social media
- Google – Disease + advocate +blog + location
Nothing about us, without us
Respect and listen to us
Treat us as equal partners on the team