30th of May 2019 

Aligning scientist and patient efforts

On the importance of role fluidity

Hi Simon!

Thanks for asking my input (and that of all of your readers ;-)) for your round table discussion at the World Parkinson Congress which will take place between the 4th and 7th of June 2019 in Kyoto, Japan.

When I wrote my post ‘When worlds collide: Open science meets Parkinson’s‘ I’ve given most of what I think is important away already.  But I would still like to highlight one aspect I think transcends all others:

Role fluidity

Role fluidity?

Yes, role fluidity. Hang in there, I will try to explain what I mean with a few examples:

  • Michael J. Fox is a famous person who has the skill to get under your skin with his humor, drive, and amiability. What’s nót to like about him? Absolutely nothing. The Parkinson’s community is lucky to have him on board. Not because he has Parkinson’s, but in spite of it. We all already had a crush on him before he was diagnosed, right?
  • Brian Wallach – a former political campaigner of the Barack Obama administration – has ALS. He is putting his drive and former network in place to combat a devastating disease beyond comprehension. The ALS community is lucky to have him on board: Not because he has ALS but very much in spite of it. For the talent to campaign and to make a fist doesn’t belong to ALS, it belongs to him. And it did belong to him long before he was diagnosed.
  • Benjamin Stecher – a former educational consultant – already was a true believer of the importance of education before he got Parkinson’s and decided to start educating himself and others about the science behind the disease. Now, he is even writing a book together with a scientist which will be called ‘Brain fiction.’ Same talents, different cause.

That’s what I mean by role fluidity. We aren’t only patients. We have many different talents and roles which we want to put into the world.

Where drive is born

Going one step deeper, I believe the three persons above all have different roles (what they do), but they also share a common drive or source of energy (why they do what they do).

I believe that their drive to align forces comes from a place of selflessness, a place of deeper understanding that we all inhabit the same planet, that we are in this together, that the sum of all is more important than me, me, me.

I believe that their drive to align forces comes from a place from which they want to use all of their knowledge and talents to contribute to a greater good, a greater good they will not necessarily benefit from themselves.

Okay, so what is your point?  

Well, I guess my point is that the unique contribution each patient can make doesn’t come from the patient part. It comes from our healthy part, which we already possessed before we got ill.

At this moment we do not yet truly harvest the ‘healthy potential’ out there. That’s because we focus on the patient role too much. Or, to speak in the words of Otto Scharmer: “The health care system is designed to deal with the symptoms of sickness. It isn’t designed to strengthen the sources of health“. But we need both! A system which deals with the symptoms of sickness on the one hand, but which also directly speaks to the unique mix of knowledge, talents and roles each one of us may bring into the equation to help speed up discovery.

Okay, I get your point. So how can I use your input in Kyoto? 

Thanks for asking, Simon 🙂

First of all, I do think it would be great to put together a list of scientist-patient-alignment initiatives worldwide. Maybe we could brainstorm about the best way to do that online?
But before everything else, the questions I would like you to consider are:

What do we – as researchers and patients – want to create together? What values do we share? Can we describe the place where our shared energy originates? Great patient-research cooperations start from “Why”, Simon Sinek would probably say.

And subsequently, how can we begin to harvest more of the unique knowledge and talents of patients-out-there who believe what we believe?

If we succeed a win-win is in the making. Not only would we strengthen our sources of health but we would also be mobilising unknown sources of energy to contribute to a common goal.

Closing remarks

Simon, thanks for inspiring me to write this blog post. As you said, 90 minutes of roundtabling will be filled in no time, so I am expecting nothing. I am wishing you a great time at #wpc2019! Keep us posted and have a great meeting at the round table.

Dialogue is the art of seeing together | Theory U


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