Tuesday, 15 March 2016

My plea to the attendees of the #hcsmca National Symposium: Patients are more than our stories

#PatientsIncluded – Once more with feeling…

I am more than my story. This is something that I know and the strength of my participation in #PatientsIncluded conferences. However, too often, when patients and caregivers are included in conferences, they are pigeon-holed into the touching or moving portion of a panel that is meant to illustrate ‘why we are all here’.

#PatientsIncluded moves the needle so that real dialogue can happen. By ensuring the participation of patient voice from the planning stages, to having multiple voices throughout conference sessions, interaction between patients, providers and researchers can be fostered. Suddenly, patients or caregivers are more than their stories, we are thoughtful members of the healthcare system, or research team. We provide perspectives that bring insight to areas that were previously obscured.

To me this is beauty.

My Patient Voice in planning required some patience...

The #hcsmca National Symposium gave me my first opportunity to be on the organizer side of a conference, instead of just on the presenter/participant side. For me this was a welcome opportunity but it did present some challenges that I didn’t anticipate.

Driving change is hard. Our scholarship opportunities for patients and caregivers depended on sponsors also embracing the #PatientsIncluded philosophy. We had some great sponsors who saw the benefit of coming on board, but this concept of partnership and engagement will require more conference sponsors to embrace the importance of engaging the patient and caregiver participant – and backing it with sponsorship dollars.

Between you and me – I am often not always the most reliable committee member. I want to be, but our changing healthcare challenges mean that their demands can be urgent and erratic. My meeting attendance can suffer from last minute cancellations and getting my input and participation requires more work than is usual. I was initially worried this would mean that the patient perspective would be missed in the planning stages. However, it became clear that the rest of the #hcsmca planning team valued the concept of #PatientsIncluded as much as I did and accommodations were made to seek out my opinions even when healthcare had to become a priority.

Could we have done better? I believe so. It was a lot of pressure on me to be the sole patient voice on the organizing committee. I was honoured to be that voice, but I underestimated the competing pressures of my home life and wanting to do a stand up job in representing the patient community. While this committee was amazing at making sure that there were ways for me to contribute despite my constraints, I’m not sure every committee would do the same. In the future, my suggestion would be to have 2 patient reps on any #PatientsIncluded organizing committee. Life is simply too erratic and one healthcare crisis can take representation down to zero all too easily. 

#hcsmca Symposium – How #PatientsIncluded influenced outcomes…


When all was said and done, we had 12 self-identified patient/caregiver attendees at the 1-day #hcsmca National Symposium. It was a room filled with communicators, administrators, physicians, nurses, social workers, and researchers. And I’m probably missing some other categories of attendees. I’m sure that many (most?) of them had never interacted with patient advocates in a conference or problem solving context before, so I was very curious to see how it was going to go. Because as I said, we are so much more than our stories. We can start with our stories. Our stories inform our experiences, but we were there for so much more than that.

So here is my take home… at the end of a very full day of day of talks, plenaries, and unconference problem-solving interactions, conference participants crowdsourced the top 10 system-busting ideas. Out of those top 10 ideas, 4 of them were centred on acknowledging the wisdom of patient caregiver knowledge (summarized beautifully by Colleen Young).

Let’s think about this for a moment. The vast majority conference attendees were not patient advocates. Yet 4 of 10 top 10 ideas were centred around patient advocacy key messages. Would this have happened without #PatientsIncluded patient voices? What if we had had more sponsorship to allow for even more patient voices and more interaction between patients and health care professionals?

I truly believe beauty lies in the interaction between and within those places that were separate before – new ideas, new perspective, perhaps even fresh understanding. Healthcare need so much more of this. And not just at conferences.

So this is my plea to the 170 or so attendees of the #hcsmca National Symposium…

  • Please, please, remember what we did there.
  • Remember the beauty of including everyone’s perspective and take it beyond the #hcsmca conference experience.
  • Don’t ever assume you know what the patient or caregiver knows or wants or experiences. We are here for the asking. So ask.
  • Whenever you’re talking about patients, make sure you’re talking with patients. Take the principles of #PatientsIncluded and include us in an authentic way. This is the path to better healthcare.
  • We are so much more than our stories.

And take to heart the number one rated idea that came out the #hcsmca Symposium and ‘Proceed Until Apprehended’. We’ll be right there with you. Beside you.

Photo by Mike Savage/21 Stops


  1. Wow! Thank you Isabel for this powerful and important essay on including the patient/caregiver voice (even when there's only one of those voices in the planning stages). Congrats to you and your colleagues on your HCSMCA committee. You have truly set the bar high for all future #PatientsIncluded events.

    1. Thanks so much. I think I was fortunate to have #hcsmca be my first experience as patient voice on an organizing committee. My colleagues were very aware and respectful of the pressures on me and my family and they did make ensure the patient voice was valued. To me, that's the beauty of the #PatientsIncluded charter, it helps put in place measures for real engagement. I did underestimate the work in planning these things - my hats off to all conference organizers - especially the #PatientsIncluded ones! ;)

  2. Great thoughts here Isabel. I have participated in several conferences. Some where patient/caregiver input was integrated very well and others were unmitigated disasters. Overall, I think things are getting better (I hope). Your point about becoming more than just the token emotional, tear jerker story, is a really important one. However, if patients/caregivers get beyond that; we need to be prepared for opposition if we offer changes in policy and practice. There are many competing interests in health care and we must be prepared for the likelihood that all may not agree with our perspective. I am not meaning to be argumentative or contrary but getting push back may be an indicator that we are making a difference.

    1. Absolutely agree with you Donald. There is no moving forward without respectful disagreement. A safe space for that must be created. That's why I think it is absolutely crucial that representation matters - why conferences must have more than one or two patients present. That simply isn't a safe environment for 'safe disagreement'. I don't believe that sets up a dynamic where a sharing of ideas can happen well. Different perspectives can always bring up disagreement, but done well, they can bring new resolution as well.

      I've also been in situations where patient/caregiver input has been done with varying success, and in those places where it wasn't, I certainly had a more difficult time in bringing up dissenting views. That doesn't help anyone. I think you bring up great points.