Thursday, 31 March 2016

A Personal Orchestra - beautiful music or discordant noise?

I stand in front of a virtual orchestra. My musicians are doctors, nurses, occupational therapists, paediatric dentists, physiotherapists, office assistants, booking clerks, and health technicians.  The orchestra has also included Speech and Language Pathologists, a variety of specialty teachers, classroom teachers, Infant Development specialists, and researchers. Each section of my orchestra has had turnover, with new members replacing old, new kinds of specialists coming in and leaving, but always an echo of their presence remains.

In the meantime, I am meant to conduct these musicians. Their instruments are their tests, their knowledge, their hands, their work. The scores they play from are their reports, the test result placed in front of them. Each of them are sitting there, on their own, quite often sublimely unaware that they are but a small part of a greater musical endeavour. I try to weave meaning and music from their parts into the greater whole that is my son’s life – taking what I can from each appointment, meeting, therapy, and class. I interpret what I learn in one area and adapt, explain as I move on to the next musician. Always hoping that I can communicate for them. Always hoping that as a conduit I’m doing enough.

Wonderfully, amazingly, some try to hear the music coming from their neighbours to make sense of it together. Others just keep playing as if they are soloists, a Diva come to the concert to play at centre stage.

And there I am, madly waving my arms, my virtual baton whirling, whirling, trying to pull the pieces together. Conducting them as if they are my orchestra, yet their music, the scores from which they read are often a mystery to me. I ask them to share with me and some do happily, willingly: Others begrudgingly and some, not at all.

And still my baton twirls, and whirls, because there isn’t anyone else to try to make this orchestra work. And my son deserves that we find a way to make some beautiful music out of this cacophony of sound. 

Pulling this orchestra together is my job. But it could be made so much easier if information sharing was facilitated through an accessible health record. A common musical score, if you will. If there was a shared recognition that a patient with complex medical needs lives a complicated life – and scheduling that life requires respect and empathy. For the sake of argument, the recognition that everyone is a part of a larger team (or orchestra) that involves those in and out of the health care environment. Finally, I know that no-one will ever advocate for our son as much as much as my husband and I do, but the expectation that we are the sole information conduit through the health care system is ridiculous. This should not be how we optimise health care for those most vulnerable and compromised.

We can make better music than this.

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

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