Patients at Medical Conferences - The CMA Health Summit

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.