Cancer Sucks

Usually when I arrive at a hospital there is a scheduled meeting with a CNO or there is a team of us looking at some cool new technology or fixing some alarm automation design problem.  I can’t help but be enamored when I walk onto the units and see nurses with wireless devices, call light systems in action, or new EMR being implemented.  I have a slight attention issue – so the movement of people, flashing lights, everything really kind of sends me into sensory overload….but I love it.

However, last week I didn’t visit a hospital for work.  I visited to sit with a friend as her husband passed away.  It’s amazing how still your mind can become when you are looking into the eyes of someone you care about and know they are suffering.   We stepped out of the hospital room for a moment and all I could think to say to my friend was “Cancer Sucks.”   

I hadn’t been exposed to a patient experience in a while and this one really sucker punched me in the gut. 

Yesterday, I saw that HISTALK did a great interview with my dear friend Regina Holiday.  Regina gave Sphere3 our patient voice. I am a proud member of the Walking Gallery.   She inspired me to openly talk about the patient story that launched our company, and to never forget why we started it in the first place.  I must tell you – running a startup is no cake walk – there have been many times that I want to just close the door – but I look at the picture she painted me and am reminded to fight another day. 

This was an excerpt from the interview and it is the epitome of why we need to keep listening to patients.

What would you say to healthcare software vendors?
I want you to think of your parent in that bed or your child or your wife or your husband when you’re designing software. I want you to think of them. Because every single thing you do should be to make sure they get the best possible care. God, I hope you get to that point before it happens in your very own life. If I can do anything or say anything to get you to emotionally that point where you’re thinking about them while you’re designing, then I’ve done my job.
(The entire interview is here http://histalk2.com/2014/03/10/histalk-interviews-regina-holliday-patient-advocate/ ) 

I have learned from e-patients that if we let the story – tear jerking emotional heart felt story – be a momentary event and not impact our on-going development then the battle is lost.  It has to be a part of your development conversations - part of your core values. Ours is easy: The patient is the purpose of the hospital.   

If you are a big Health IT company and you haven’t had Regina in to speak – call her, email her, find her on facebook, send her a tweet…. You owe it to your team to meet her.

In closing…. The morning after he passed away, while I was having my quiet time, I wrote this down.  Eloquence has never been my strong point, but I thought I would share it with you all anyway. 

Cancer Sucks

It does not care how old you are…. You could be a middle aged mom with young kids or a Grandpa with lots of grandkids.  You could be 80 years old or 8 years old…. Your age means nothing.

It does not care how much you weigh, if you are ugly, or beautiful in the sight of others…. Your looks mean nothing.

It does not care about the color of your skin, your race, or how you chose to live.  Those things means nothing.

 It does not care if you have a billion dollars, million dollars, a thousand dollars, a single dollar, or no dollars at all.  Your wealth means nothing.

It does not care whether you are smart or dumb whether you have a degree from the school or hard knocks or from Harvard.  Your education means nothing.

It does not discriminate…its open door policy….
We don’t get to choose whether we walk in the door….Cancer chooses for us.

Your schedule means nothing. Your loved ones mean nothing. Your plans and dreams mean nothing.
It hates…it destroys… Cancer just Sucks

So I say back to you Cancer…. The only thing you can truly impact is time.  The only joy you steal is the joy we let you steal.  You have no impact on faith because it is independent of circumstance.  You have no power over love. You never really win.