It’s been a week and a half since the Canadian Medical
Association inaugural Health Care Summit concluded in Winnipeg.
A conference that I was able to attend. Being local does have its privileges.
A unique feature of this Health Care Summit was that a group
of patients were invited to attend and participate in the conference. I was one of 27 patients who attended the
conference as a patient/caregiver advocate (I am not a patient). The CMA actively sought out patient reps from across the country to attend.
Our plucky group of patients was joined by over 700 members
of the CMA. So this is one of the larger
medical conferences that I have attended.
My first comment about the event was that the organizers did
a good job of orienting the patient reps.
We received an orientation package a week before the event and we were
all able to participate in a conference call where we could ask some questions
and get some basic information on the event.
We also had a breakfast that was planned on the first day where the
patient reps could all meet each other and connect. This preparation that the organizers
undertook was well received and I think we all appreciated the effort of making
patients feel welcome.
In addition to the organizers doing a commendable job of
including patients in the preparations to the conference, I certainly felt a
welcoming presence from many of the other attendees. If the purpose of the Health Care Summit was
to open up the proceedings to a wider audience than just CMA members, I think
they did a good job. I think anyone who
is interested in Health Care and Health Care Policy would benefit from
attending an event like this.
What’s In It for
Patients?
One thing that I felt missing from the event was a specific
purpose of having patients present. I
may have a jaded perspective, but whenever patients are invited to these
events I skeptically ask “why?” Is this
just good public relations for the CMA?
Is there a specific deliverable in inviting patients?
For me, I was able to connect with many people who I know on
social media who are involved in many facets of health care. I took a lot of notes about some of the
higher level policy issues that were discussed.
I certainly learned a lot. I am
speaking at a conference in late September so I was able to pick up some good
talking points.
Yes, I certainly learned lots and made some good connections
but I still struggle whether it was worth it.
I have to book time off work and sacrifice a significant amount of
personal time to attend these conferences.
I would consider it well worth it if I knew it was making a difference
but many times I wonder if it is.
A Patient Perspective
A comment heard at the conference more than once was “Why is
a patient not on a panel discussion?”
Good question. Specifically when
the subject matter is patient centric. I
think everyone realized this was a missed opportunity.
I think it would have certainly added to the discussion to
have a patient be able to participate in some of the discussion and be able to
take questions from the audience and participate in an expanded role.
However, there is one small issue with this.
If I were to be invited to participate in a panel
discussion, I would have one significant barrier. I represent “A” patient perspective and not “The”
patient perspective. If you bring one
patient rep onto the stage they can only represent their perspective and not of
patients as a whole. I try very hard to
make that distinction. That does not
mean that patients can’t provide a lot of meaningful input but the audience has
to realize that patient perspective is diverse and not in any way
homogeneous. There is not a patient lead
organization in Canada that is specifically tasked with developing position
statements based solely on the views of patients. I know some organizations who are starting up but they are still in their infancy. The vast majority of patient advisory councils
or other patient committees exist at the whim of a larger organization that have other priorities, not just patient engagement.
I think that some organization that represents patients and ONLY
patients is needed. A united patient voice
could provide a powerful message.
I think the CMA did a great job of selecting patient reps who did represent several perspectives. I think they also selected a group who are not shy about asking questions and participating even though they are drastically outnumbered. This does not surprise me as many of these people have been die hard advocates for many years and they are used to being outnumbered and having to be a little more aggressive when they want their opinion heard.
I think everyone at the conference was well aware of the group of patients in attendance. Kudos to all of you (patient reps) who attended and participated so effectively. You folks are awesome.
Lesson Learned
So if I had one take away from this event what would it be?
This event was well produced and choreographed. Lots of bells and whistles but one thought kept rolling around in the back of my mind. A truth that I believed to be true before I attended this event.
Patient engagement is not about attending a fancy medical
conference or being part of a patient advisory council. Engagement is about meeting patients where
they are. In a Doctor’s office. In a clinic, or in a hospital. It starts out with “Hi, how are you?” …”What
brings you in today?” It is about a relationship and developing trust between
patient and physician. It is the simple
courtesies that we were all supposed to learn as children but seemed to have forgotten
as adults. It is about treating a
patient where they are and it takes place all over this country. From the largest hospitals of the UHN network
to a family physician’s office in Williams Lake BC.
When a patient comes in to see you, they are already
engaged. The question is are you?
That's patient engagement.
