A Patient Partner’s Experience at Quality Forum 2019: Andrew Koster’s Story

Anyone who lives with persistent pain will know how much energy it takes to simply get through a single day. That’s why I asked myself what in the world I was thinking when I applied to attend the intensive three days of meetings, speakers, seminars, field trips, hallways, elevators, no daylight and thousands of people that was the Quality Forum 2019.

As I walked to the hotel, cane in one hand, rolling suitcase in the other, only to find a long line at check-in, I wondered whether this was going to be a success or a huge disaster.

If you’re a chronic pain patient, you might recognize this line of questioning. It’s our very own pain cost/benefit analysis we apply to just about everything. Was Quality Forum 2019 going to be worth the cost? Not the financial cost, though: I was generously supported by the Canadian Foundation for Healthcare Improvement.

Riding the whirlwind of ideas at Quality Forum 2019

In short, at the Forum I was blown away with all kinds of reactions and emotions:

  • Humbled by a mother and daughter who spoke about their transgender journey When Your Body Doesn’t Match Your Mind.
  • Frustrated to hear the phrase “opioid crisis” used by health care professionals who should know better. This phrase is stigmatizing and inaccurate. We have an overdose crisis, not an opioid crisis, and pain patients are not the cause of the crisis.
  • Warmed to learn how music therapy provides physical and emotional relief at a hospice in Powell River.
  • Intrigued by the potential of patient journey mapping

The Quality Forum exists in part, I think, to make you look at issues from another point of view, to question assumptions about health care in our province and to find new ways to identify problems and find solutions.

I attended sessions that looked at:

  • Whether health care activities worsen health outcomes by adding to climate instability. A researcher looked at hospital use of anaesthetic gases, re-usable versus throw-away fabrics, telemedicine, and cases in which frequent post-operative blood tests led to the need for transfusions.
  • How children on the autism spectrum are treated in surgical settings. The staff enlisted the wider community to find practical ways to ease the impact, which benefited all children facing surgery.

My favorite session at the Forum

One session about “Creative Destruction” really caught my attention – how could you not go with a title like that?

The idea was to identify and fix counterproductive actions and outcomes by first trying to create (on paper) the very worst system you could ever imagine. (I am very good at this.)

Our group looked at a hospital ward. Suggestions included no more coffee breaks, eliminating the nurses’ union, and not showing up to work and meetings on time. My suggestion was “to have everyone speak Klingon to the patients.”

The next steps were to honestly review these odd suggestions to see if there was even a sliver of truth in any of these odd “improvements.”

When it came to the Klingon suggestion, I asked my table mates whether any of them thought that speaking with patients using health care jargon wasn’t like speaking Klingon to them?

I am glad they got my point.

Takeaways from the experience

Overall, I felt very fortunate to be a part of QF19, but there was this nagging concern about how patients were perceived by the clinicians and administrators during the event. Many years ago, when I was an Angry Young Student, we occupied the President’s office at our university. It was the early 1970’s and we were full of reformative passion. As he was leaving, he shook his fist at us, and shouted: “This university would run perfectly if it wasn’t for you students!”

I have always felt that way about the health care system.  That often we are intruders in their steady-state system. And why are we so… sick?

Is patient engagement a meaningful attempt to change the system, or is it tokenism? The patient participation movement is relatively new, and at one level I understand that change takes time. But at another level I wonder if my impatience is shared by other patients?

Looking at the entirety of the days, there were some breakout sessions where a patient was a part of the presentation team, and I counted two sessions that were patient-led.

Not enough.

And I had questions about the process of change and improvement:

  • Are we viewed as equals to the systems analysts and the clinicians?
  • Is our experience as valued as the education and skills of the health care professionals?

I think we have a long way to go, but the journey is too important to stop now.

And what about that pain cost/benefit analysis?  Well, the body said: “Fool, what are you doing to yourself?”, and the brain said, “Body, you have no clue what’s good for you.”

Can you guess whose advice I took?

Guest post written by Andrew Koster

Andrew Koster has lived with persistent pain for almost 15 years. He lives in Victoria and is retired from a long career in the film and television sector. His volunteer work includes being a patient partner with Pain BC and sitting on two of their advocacy committees that address patient support and medication stewardship. He has also recently become a part of PVN. Find Andrew on Twitter: @northender480

Guest-author
Andrew Koster

Guest-description
Andrew Koster has lived with persistent pain for almost 15 years. He lives in Victoria and is retired from a long career in the film and television sector. His volunteer work includes being a patient partner with Pain BC and sitting on two of their advocacy committees that address patient support and medication stewardship. He has also recently become a part of PVN. Find Andrew on Twitter: @northender480

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