How Patients Included is really about Inclusion

 

I stopped going to health conferences when I was diagnosed with cancer two years ago.  With this pause came perspective.  As a mom attending pediatric conferences, I often had to beg for compensation if I was a speaker.  Even if I was an attendee, I had to go through long, drawn-out negotiations with conference organizers and accounting departments to get my expenses covered.  Every single time I went to a conference there was a cost to me financially and personally.  There was a cost to my family too.

It started to feel like I was an add-on to the conference as a token patient just so they could self-accredit and say they were Patients Included.  With my pause in conference-attending, I now see that I didn’t just FEEL like a token patient, I WAS a token patient.  I now have the clarity to observe that conference organizers treat other patients and families shabbily too.  I would like this practice of shabby treatment to stop.

I was going for one of my regular walks recently and chatting on the phone with Isabel Jordan, who is the co-author of both this great article about compensation and the Patients Included movement.  We have had many conversations about partnering with patients.

My epiphany as I was crunching along a forest path was this:

The principles behind Patients Included at health conferences and the inclusion of disabled people are the same.

Inclusion is inclusion.  Take a look at the now-famous diagram of inclusion that I’ve posted above.  Let’s look at each of those circles under a health conference lens:

1.  Exclusion

For years, patients have been excluded from health conferences.  (This still occurs – even with Patient Engagement conferences.  If you can’t see the irony with that…).  For instance, at cancer conferences in Canada, the idea of inviting patients is still a brand new thing.  Most times we just don’t get invited.  Or one super-celebrity patient gets invited and nobody else. That, too, is exclusion.

2.  Segregation

Sometimes a group of chosen patients are invited to a conference.  There patients are ‘allowed’ to have their own sessions, separate from the rest of the conference.  This is better than exclusion, but it is still segregation.

3.  Integration

This where patients are ‘allowed’ to attend and ‘allowed’ to be in the same room as the other conference attendees.  I’ve been to those conferences – us patients often clump together at sessions and social events and not recognized by the other conference-goers.  Literally nobody saves us a spot at their table, so we sit at our own tables.  Most conferences are like this.  Patients are reluctantly invited and not embraced or accommodated to be full participants.

4.  Inclusion

This circle depicts inclusion.  This is something to aim for and illustrates the intention behind the whole Patients Included movement.  See all the coloured dots that aren’t green?  Those spots are all the patient attendees.  Here we are on conference planning committees, invited (and paid) as speakers and sitting at the big kids’ table with everybody else.  It is important to note that there can be exclusion even within this inclusion model.  That happens if the same patients are invited and attend conferences over and over again.  Within patient groups there can be exclusion too.

Hanging out, patiently waiting, on the other side of inclusion is belonging.

In talking about inclusion of kids with disabilities, Sara Pot – paraphrasing from John Swinton – says it best:

Inclusion = we’ll make room if you show up.
Belonging = you need to be here and you’re missed when you aren’t here.

Now apply this to health conferences.  You have to work your way through these circles and do inclusion right before you even get close to belonging.  Right now, many conferences struggle with even making room and helping patients show up.

Cynical me wonders if health conferences truly want patients at “their” conferences or if they see Patients Included as a tokenistic trend and a flavour of the month.  This would be a real shame and I think a grave misuse of the intention of the original Patients Included charter.

Optimistic me believes that authentic patient inclusion at health conferences can be done.  The key is that patient inclusion (and eventual belonging) will only happen if we do it all together.  If you are unsure if your conference is truly Patients Included – beyond accrediting yourselves and putting Patients Included on your website – you need to ask patients themselves.  Bonus points if you seek a diverse assortment of opinions and don’t just talk to your favourite patients.

power

Note:  If you are interested in improving your health conference, I’d recommend you consult with patient partners early on in your planning.  They can help light the way. I do know patient partners who do this kind of work – send me an email and I can connect you up…

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