Rethinking Healthcare Engagement

This is a space for to reflect about my 15 year journey in engagement as a caregiver in the paediatric healthcare system. Often when we think about the word 'engagement', it is coming from an organization or research perspective and includes things like how to do engagement 'right' and the benefits to an organization/research. Rarely do we speak of the benefits for people with lived experience (PWLE) or the emotional labour that is required to engage. For me, I have had many instances where I have felt tokenized, not listened to or just straight up felt badly after an engagement experience. I think it's time to Re-think Engagement from the lived experience perspective and consider the following:

Readiness to Engage

Depending where you are on your healthcare journey, there may be different reasons to engage. Early on in my journey, I was presented with several engagement opportunities. I felt flattered at the time and felt guilty saying no. Engagement stirred up feelings that made me think that I was part of a community, but these feelings were often short-lived. Engagement also gave me what I now realize was a false sense comfort when things were spiralling out of control (healthcare navigation-wise). It was easy to trick myself into thinking that I was going to make a difference and that my efforts might change the system for the better. In reality, I did not have the insight nor the understanding of the difference between true and 'fake' partnerships and I was not able to protect myself when I was being tokenized.  

What Problems Need Solving in Healthcare?

Engagement has been praised as a better way to build healthcare solutions, however the 'problems' we are tackling typically originate from the research or organization perspective.  While engaging PWLE can make solutions more relevant, the overall effect is negligible if you are tackling the wrong problem in the first place. In my 15 years of engaging with the healthcare system I have rarely had the opportunity to talk about and find solutions for the REAL problems that my family has experienced. Ultimately, I have been and still am left to solve these problems on my own:

• Finding childcare for my technology dependant child so that I could go back to work after maternity leave.
• Figuring out how to build a customized school support program that evolves with my daughter's developmental needs so that she can attend school from junior kindergarten to grade 12.  
• Finding a way to prioritize whole person solutions for my child's daily procedural pain within a fragmented system that emphasizes specific body parts.
• Finding a flexible and empathetic workplace that allows me to earn money to cover expenses while balancing all of my family's needs (including the health needs of my child).
• Managing finances so that we can cover $25K of out of pocket medical expenses that we will incur when my husband retires (and loses private health benefits). (Or figuring out a way to get this covered by the government).
• Finding mental health supports that are specifically designed for caregivers with specific customized solutions (not just general self-care suggestions).
• Finding supports that are specifically designed for siblings of children with chronic health needs.
• Identifying productivity 'hacks' that will save energy, time and or money.
• Figuring out my role as a parent and what my daughter needs to learn as we transition from the paediatric to the adult care system. 
• Figuring out how to to separate my emotions from my child's healthcare challenges so I can talk to healthcare professionals in an efficient and effective way.
• Figuring out which aspects of my 'story' I am comfortable sharing publicly and the differences between 'my story' and 'my child's story.' 

I would love to start working with healthcare administrators, providers and researchers to look at problems that originate from people with lived experience (PWLE) on a granular level and then reverse engineer practical and sustainable solutions within the healthcare system. I would also love to find a way to highlight organizations and programs that are already doing great things, analyze what makes them successful and then figure out how these programs can be scaled.