Over the past 9 years and somewhat Ad nauseum, I have carried the torch for patients and their voices into some pretty VIP places and in front of some HUGE names in healthcare. I’m not bragging , it’s just a fact.
It wasn’t always easy and I did it with a lot of trepidation at first. Like most people with a new mission, I had to get my courage up and my feet under me. I was never in the limelight or even a good public speaker in my days as a hard working bedside nurse. My audience was much more intimate, sick patients and their very worried loved ones. I always tried to be gentle and to make them smile or at least cheer up somewhat. Being a patient is the most challenging job any of us can face, and they don’t want much, just attentive care and competent clinicians who will work with them. I think about patients, especially my own father, when I am nervous about a presentation, then I think “what do I have to worry about?”
Some of the places where I have been a speaker or a guest, or an attendee are the DHHS, CMS, State and Federal CDC, IHI, IPFCC, Aligning Forces for Quality, Robert Wood Johnson Foundation, Consumers Union Safe Patient Project, APIC Idaho, Lown Institute, Maine Quality Counts, Maine Health Management Coalition, Maine Patient Safety Academy, Maine State Legislature, and a bunch more. A few of those organizations even gave me recognition awards! That was an unexpected honor.
In the early days of my Patient Safety work, I was shocked and felt a glimmer of hope every time I was called on to comment or ask a question. It seemed that some of those people actually cared about what I had to ask or say. Then, HOLY MACKEREL, I would see an actual patient representative speak, or be on a panel discussion. Then all of a sudden, it was ME they were asking to be on a panel! Then of course the unbelievable honor….I was asked several times to give a keynote talk. I worked extremely hard on my talks, because I had to strike a balance. I had to get a powerful message out, without pissing healthcare people off. I might have failed that a few times, but you can’t always keep everybody happy and be an effective Patient Safety Advocate at the same time. Early in my work, I was angry about losing my Dad to a preventable hospital infection, but I struggled to keep my tongue. If I hadn’t…things could have been very different.
Fast forward. As part of my work, I have helped with planning of the biggest healthcare event in Maine. A few of us on the planning committee are consumer representatives, and the organization has been excellent about inclusion of the patient/consumer voice. Every year we have similar conversations and toss around ideas about how to increase consumer attendance, and to include them in the presentations. This year was pretty similar, so imagine my surprise when I read all of the breakout session descriptions and as far as I could tell, not one single presentation has a patient/consumer representative as a panel member, not ONE! HUGE GAP! And no, the old ruse that “all of us is a healthcare consumers and a patient at some time” doesn’t float anymore. Unaffiliated patient/consumer representatives only!!!! I usually do a patient oriented presentation for this event, but I have increased personal family responsibilities this year, so I did not present an abstract proposal. But, I am not the only unaffiliated patient (or patient/consumer representative) in MAINE!
There is a common thread in almost all of my groups. There is an effort to build on the patients voice, but there is also a very subtle control over it. Sometimes I worry that it is intentional, but mostly I just think people forget who they are working for….. PATIENTS! I have been in huge conference rooms where courageous real patients shared their stories and wisdom on a big stage. I have been on a few of those stages and it is daunting, but also exhilarating. The room, mostly VIPs, doctors, nurses, lawyers, state or federal leaders, other healthcare dignitaries was hushed and totally absorbed in what they had to say. Nobody expects patients to bring the complex science and the heavy data with them (although some do), but when they speak of their own life altering experiences about their success from a certain treatment, or approach and what they lave learned, shared,and observed. the room is always riveted on them. That is not always so when a high falootin’ healthcare professional drones on about what he/she has done FOR patients. and then attempts to tell THIER PATIENTS stories. Patients can do that for themselves. All they need are the opportunities, encouragement and sometimes a little rehearsal to preserve the time and point of a presentation.
My new mantra for any healthcare conference planning I am involved in from now on will be this.
MAKE PATIENTS THE FIRST THOUGHT IN YOUR PLANNING, NOT AN AFTERTHOUGHT.
IF YOU’VE GOT A BETTER WAY, PRODUCT, SCIENCE TO PRESENT ABOUT, BRING PATIENTS INSTEAD OF POWERPOINTS TO PROVE IT. INVITE THEM TO SHINE, FOR THEMSELVES, FOR YOUR MAGIC POTION AND FOR THE BENEFIT OF ALL. IF YOU ARE GOING TO DISCUSS A PARTICULAR HEALTH PROBLEM/SOLUTION, BRING A PATIENT WHO CAN GIVE A HEARTFELT PERSONAL TESTIMONIAL. GOT DATA? BRING THE NUMERATORS AND DENOMINATORS, TRANSLATION: BRING PATIENTS INSTEAD OF TEENY NUMERICAL GRAPHS THAT NOBODY CAN READ. IF YOUR GROUP IS DISCUSSING PATIENTS, INCLUDE THEM , PUT THEM IN LEADERSHIP ROLES AND ON SPEAKER PANELS. UNLESS YOUR MEETING IS EXCLUSIVELY FOR CLINICIANS AND IT IS COMPLETELY ABOUT THE SCIENCE, PUT PATIENT FIRST AND FOREMOST ON YOUR AGENDA. BUT CONSIDER THAT EVEN THE MOST GEEKY SCIENCE BASED HEALTHCARE CONFERENCES ARE ABOUT PATIENTS, OR AT LEAST PATIENTS HOPE THEY ARE. MAKE SPACE FOR PATIENT PRESENTERS.
If I could just send this message to every organizational planning committee call I have been on and walk away knowing people had paid attention, it could save me many hours on conference calls. But, I do love my calls and the networking and the brilliant people I work with all the time. I just hate having to repeat my message about the Patients Voice every year, every meeting, every organization, over and over. I hope it will eventually stick and someday when I am too old to do this anymore, people may say, “I miss Kathy Day and her nagging about bringing the Patient’s Voice.”