Happy New Year!

I wish you a 2019 that is bigger, bolder, brighter. A 2019 that takes 2018's failures, pivots & crafts them into rewarding successes. A 2019 filled with meaningful connections, conversations, and thought-provoking work. I wish you a 2019 filled with kindness.

I'm thankful for a 2018 filled with heart-racing opportunities, endless incredible people to enrich my life and community, and the joy and challenges my work in patient advocacy brings. I'm grateful for every devastating rejection, failure, and the endless naysayers and dishes of criticism 2018 brought. You've made my voice & drive that much stronger.

Dear 2019, I'm laser-focused. Who's coming with me?

Shattering the Mold: It’s Time for Reality Conferences

Thematically and structurally, the majority of healthcare conferences are all predominantly (sadly) the same. A celebration of successes, achievements, and pats-on-the-back. Shows of sheer brilliance. Accomplishments beyond the average person’s wildest dreams. Demonstrations and exhibits that are mesmerizing to the beholders’ eyes. Thought leaders in sharp suits with pocket squares or classic pumps are illuminated in spotlights, while the audience sits in silence with their eyes fixated on the stage. Reporters are scattered throughout the room, furiously taking down words of triumph for their next breaking press release.

Healthcare conferences are addicted to demonstrations of achievement and, in ways, rightfully so. Healthcare and medicine are not for the faint of heart. Grit, resilience, foresight, dedication, blood, sweat, and extreme sacrifice pave the way to success. But why do we continue to omit shortcomings, barriers, failures, and the herds of pink elephants that stand among us? Why do we continue to solely feed attendees with promises of potential, displays of futurism, and innovations that push the boundaries of tangibility, while avoiding discussions of real-time, foundational problems that need attention NOW? Poverty, mental health, addiction, substance abuse, drug prices, healthcare costs,barriers to access, fax machines, poor coordination of care, lack of universal access to information, food deserts, impact of tobacco and alcohol, and social isolation only scratch the surface of the daily realities of those struggling to achieve true wellness. Bionic contact lenses and sending a Tesla to Mars aren’t going to help any patient today or tomorrow.

Highly respected conferences have some of the most admirable, powerful, and influential people in attendance as well as gracing their microphones. How ironic is it to have the likes of these people spending the majority of their time at a conference sitting in silence, focused on listening to unidirectional informational flow? Phones are encouraged to be silenced. Live tweeting and sharing of information from presentations is some cases still considered controversial. Limited networking breaks offer small talk over wellness beverages or individually brewed espressos topped with the endless search for a free outlet to charge whatever electronic device is on the brink of dying. This is not innovation. This is not disruption. The is not advancing anything besides perhaps personal agendas.

What should the purpose of conferences be? Is there anything more valuable than making connections, bridging silos, and collaborating to dismantle barriers in real-time? Have you ever attended a conference and witnessed something actionable happen on stage? What if participating speakers were encouraged to address pressing problems as part of their speaking commitment? Taking a play from the show, Who Wants to be a Millionaire, what if speakers were offered lifelines, such as phone-a-friend, to begin connecting the right people and influencers to address major problems patients are struggling with right now? I guarantee the majority of invited keynoters have the necessary connections within the confines of their contacts to truly move the needle. What if leaders with solutions could dial in virtually and be given the opportunity to join problem solving sessions? Imagine if phones at conferences were ringing off the hook like on a Wall Street trading floor, with solutions and ideas pouring in, truly connecting the dots. What if the criteria for giving a keynote address was driven by which attendee connected the most dots in real-time by deadlines set throughout the duration of a conference? Talk about flipping the script! Keynote speeches would then become real-time draft plans as to how a problem affecting patients was going to begin to be solved. Uncharted and rough dirty? Yes, but all of the world’s most brilliant diamonds start that way.

Is this going to be well scripted and seamless? Far from it. Could this get messy? Absolutely! Are there going to be disagreements and heated debates?I hope so. Tough times call for tough discussions. Reality TV has produced some of the most memorable and highly acclaimed TV shows. Is it time to consider reality conferences in healthcare?

There are only 2 camps of people in healthcare: those who want to transform it and those who just want to talk about transformation. How can we create and execute a never-been-seen-before conference that gives those that reallywant to roll up their sleeves, connect the dots, and truly get stuff done an opportunity to showcase what they are made of and capable of doing?

Grace Cordovano, PhD is a professional oncology patient advocate, patient experience enhancer, and Citizen Health 2018 Ambassador.

Follow her on Twitter: @GraceCordovano

The Fix for Healthcare: A Tsunami

Dearest Medical Schools,

            Recently, at the 8th Annual Patient Experience Summit, Adrienne Boissy, MD, MA, Chief Experience Officer at Cleveland Clinic Health System, encouraged conference attendees to “dream bigger”.  Since then, I’ve been plagued with many sleepless nights and perhaps what many will consider borderline insanity.  I assure you that what I’m going to ask of you today is truly my version of dreaming bigger.  So here goes.  It’s time for you to invite patients to speak to promising young doctors during their time at your respective schools.  Not just for a volunteer opportunity.  Not just for a Patients’ Day event.  Not just for a photo-op for your quarterly donors newsletter.  You need to invite patients for regularly scheduled story sharing.  Don’t roll your eyes at me just yet.  It’s time to invest in patients and their stories to enrich your curated curriculums.  To clarify, by invest I mean not only to welcome patients to your exceptional facilities but to compensate them for their time as well.  Please don’t stop reading just yet.

            Your students are only learning half of the story from the cadavers and medical experts at your prestigious facilities.  For medical students to truly learn and understand the other half of the story, you will need to depart from the way things have always been done and revamp the medical school experience.  My dearest medical schools, you need to change the lens your students are looking through to learn. They need to understand the human repercussions of the diseases they so astutely diagnose.  They need to share and revel in the joys and tribulations of a parent whose child was miraculously saved.  Your young doctors need to experience the recollections of a spouse who tragically lost their loved one to a difficult battle with cancer.  Your knowledge hungry students need to hear first-hand the accounts of those living with painful, chronic diseases. Your students need to see the effects of avoiding difficult end-of-life conversations and the unnecessarily prolonged deaths adult children see their aging parents endure.  Students need to hear about successes of truly delivering consistent, quality care and the difference simple eye contact and active listening to a patient truly makes.  Young doctors-to-be need to hear first hand about near death or true back-from-the-dead experiences. It’s one thing to learn about death from a textbook or to see a patient code in the hospital. It’s another thing to be in a pin-drop silent room and hear the riveting account of those who have experienced their own death and have shockingly fought all odds to come back to tell their story.  These young, curious, motivated minds need to hear the accounts of everyday patients and the challenges they routinely face.

            There are two sides to every story.  Your students need to hear from those “non-compliant” patients that show poor medication adherence to understand their financial struggles, their difficulties getting to appointments and to the pharmacy, their challenges with suffering from debilitating side effects.  We can’t continue to ignore the impact of social determinants of health on patients.  Your young doctors also need to hear stories about wonderful care that’s being delivered across the nation, care that nurtures, supports, and empowers patients because there are incredible things happening everyday.  We need to inspire them because not all is lost and forsaken.  Your students also need to hear about terrible, undermining, exploitive care.  Care that left patients hurting, feeling lost, abandoned, taken advantage of, and hopeless.  Poor care and communication that brought patients back to the ER or ended up in medical errors and death.  Don’t forget about including doctors and nurses who have reversed roles and become patients themselves.  Their experiences will be uniquely different yet completely eye-opening.  Their takeaways will be pertinent.  I can assure you, the gut-wrenching emotional roller coaster that comes with the accounts of patients, such as Dr. Rana Awdish, Director of the Pulmonary Hypertension Program at Henry Ford Hospital and author of “In Shock”, Mary Elizabeth Williams, author of “A Series of Catastrophes & Miracles”, or of Dr. Lucy Kalanithi, widow and caregiver of Dr. Paul Kalanithi, “When Breath Becomes Air”, are priceless.  But these accounts only scratch the surface.  We shouldn’t only focus on well-published stories.  We need to seek the activated patients in our local communities, amplify their voices, and listen.   Really listen.  It’s in their messages that we will find solutions to heal our broken healthcare system.  Dearest medical schools, I ask you to be the early adopters our healthcare system is crying out for so desperately.  Give your students a medically cutting-edge education that is bathed in the human experience.  We need to dispel the myth that there simply isn’t time for such initiatives.  Time is always there.  It’s priorities that need to be adjusted. Be the disrupters in healthcare that reintroduce empathy into the sanctity of the doctor-patient relationship at it’s earliest kindling.

            Let’s not forget to include patient caregivers as they are the boots-on-the-ground at home when there isn’t a doctor or nurse in sight. (Don’t roll your eyes at me again.)  They dedicate more time to the patient than any individual doctor or nurse ever will.  Caregivers know the patient better than any doctor or nurse, and sometimes, even better than the patient themselves.  Invite them to share their stories, their trials, their heartaches, their happiness, and their grief.  I assure you the results will be lasting and profound.  If you still need convincing, you need to listen to Regina Holliday, founder of the Walking Gallery, speak.  Regina’s passion is fueled from her experiences advocating and caring for her husband, Fredrick Allen Holliday II, who died at 39 years of age from kidney cancer.  Together they faced endless complications stemming from poor care coordination, medical errors, lack of transparency, and poor access to his medical records.  Regina’s words will reverberate through your soul.  Again, there is a sea of caregivers waiting to share their stories.  I urge you, don’t wait a second longer to start reaching out to them.

            We need to start a movement, incorporating patients’ and caregivers’ stories and experiences into medical education and healthcare design. It’s a blatantly missing piece.  As you can see, without it healthcare is falling apart at the seams.   This can’t start and stop at medical schools.  We need to extend this to nursing students and medical technicians.  Anyone that plans on working in healthcare, from the chief of the department to the nurses, to the phlebotomy technician, to the custodial or food and beverage staff, every individual needs to hear patient and caregiver stories. Dearest medical schools, I’m asking you to be the drop of water that disrupts the surface of healthcare, the ripple of which will reach far and wide, outside of medical and nursing schools, outside of hospitals. If many medical schools participate, that ripple can become a tsunami. As far as I know, tsunamis are unstoppable.

            Empathic design and patient-centered care are buzzwords of all the rage. Empathic design isn’t about the soothing shade of white paint selected for a new hospital building.  It isn’t about incorporation of more natural light and miniature indoor gardens into hospital foyers. Patient-centered care isn’t just about improving Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) scores. Dearest medical schools, do you want an innovative, esteemed educational program that truly embraces empathic design and patient-centered care?  Invest in patients and their caregivers and let me know how it goes.  I bet you a dollar it’s going to be simply earth shattering and amazing.  Looking forward to witnessing the tsunami.

Best wishes,

Grace Cordovano, PhD