** This post was originally featured on Patient Voices Network website.
Patient partner Ovey Yeung shares her story of recovery and patient engagement advocacy. Ovey speaks to the importance of the patient experience and provides some practical tips for health care teams as they move forward with including the patient voice.
I was not fully weight-bearing and had a walker when I left the GF Strong Rehabilitation Centre in Vancouver.
I had been struck as a pedestrian in a hit-and-run accident. I spent days in the ICU (yes, I was on a ventilator) and was put in an induced coma for 10 days. I broke my pelvis, sacrum and humorous. I had a major traumatic brain injury. This was and continues to be a life-changing moment for me.
I had so much work to be done on my journey of healing that I needed all the professional help I could get to recover.
However, I quickly felt the frustrations of accessing resources and had difficulty navigating the system. My therapists helped me explore and assess the damage the incident had done to my brain to determine the treatment I would need but I quickly outgrew the system and the programs that were designed for me. I was high-functioning very early on and I know myself best, I knew what worked for me and what made me tick, so I learned to act as my own case manager. Everyone in my health care team had their own system, process, and their own files that didn’t speak to each other even though I was the common denominator.
Our healthcare system is fragmented
The difficulty isn’t the 45 minutes of physio with my physiotherapist.
The struggle is leading up to my appointments, how I book, how I am reminded of it, the experience once I arrive (friendly/unfriendly receptionist), then after the appointment, collecting the files, having to send them somewhere else, signing papers for privacy or giving permission to send my files to other health care providers. My care requires constant coordination between all the therapists.
All these interactions that I have with various team members make a difference in my experience as a patient.
Patient experience doesn’t begin at the door, it begins at the sign of contact
Frustrating is the word I would use to describe my experience with navigating the system. Stress is what it causes and no person who is trying to heal needs more stress. To access our public healthcare system, I had to learn the skills and build resilience to advocate for myself and to navigate the system. Is that the norm? Is that what we want the norm to be?
If I could make the pain that I have suffered help someone else’s life and experience with health care easier, then I would and the Patient Voices Network (PVN) makes it possible!
Even so, let me tell you, even giving back my time and energy to improve the health care system itself is not as easy as you may think. There is more to it than that (putting it lightly).
My experiences with the opportunities have been inconsistent but after a while, you begin to understand which health care partners “respect” or “value” patient feedback/voice more and which ones do not. Of course, within the health care organizations, there are always different contacts so the experience changes. As a very active patient partner (almost full-time), this has still taken me eight months to understand.
I think health care partners are becoming more and more aware and slowly getting better with patient engagement.
Patients experience their trauma repeatedly each time they share their experiences
Not everyone values patient experience and patient involvement in designing health care programs/services. I am happy to talk about the skills I have but I don’t believe I should have to sell my personal experiences because they are sensitive, personal and can be triggering. However, I am happy to share my experience when it’s appropriate and I feel comfortable.
Some good practices that I have noticed:
- Knew what they were looking for and communicated it clearly in the opportunity (expectations set for both patient and partner)
- Consistent communication (very approachable and personable)
- Met with the patient first before meeting with the larger committee (prior preparation or onboarding)
- Set the tone of the dynamics to treat everyone’s input equally (made me feel valued even as a volunteer)
- Acknowledged topics were sensitive and what they were asking us to do by revisiting that experience again (showed empathy)
- Followed through with the results (responsive to feedback)
I want to know my involvement made a difference. Not the one-off, “thank you” (although, that would be a great place to start). I want to know that me revisiting those awful experiences resulted in positive results. The impact that I make is important to me and motivates me to continue revisiting my health care journey.
What makes it meaningful is knowing what the impact is
Being involved in these projects has broadened my understanding of the system and helped me empathize with health care challenges and limitations. Health care still needs a system reform. They still need our help. Participate because those who value patients’ voices implement your feedback. Get involved because this is for your kids and your future care. Get involved because health is something that everyone will experience – we all age.
Remember that these take a long time so we can’t expect immediate results!
What matters to me is to walk away feeling that my experience matters.