Emily Kramer-Golinkoff: The networked patient

Editor's Notes

• #2: Success stories in medicine are usually about people with terminal cancer who, despite the odds, get on an amazing new trial and are cured forever…  My story isn’t like that. I’m 28 and I have advanced-stage Cystic Fibrosis. I’m working my hardest to stave off
• #3: lung transplant, but it’s getting harder as I approach the average CF life expectancy.  My story is not about happy endings or miracle cures. It’s about something bigger and more transformative. It’s about hope for healing our health care system through connectivity
• #4: and collaboration.  Two years ago, my lungs revolted. Their ammunition was blood. And they were tireless. A life-threatening CF complication, lung bleeds occur when a blood vessel bursts, causing blood to surge up your airway… making you feel like you’re
• #5: drowning and compelling you to cough.  As you lower your hands, the splattering of blood on your palms serves as the most damning evidence in the world. Bright red. Gutturally shocking. Like the devil appearing—and coming from within.  The conventional treatment for
• #6: lung bleeds is to stop aerosolized medications for 24 hours to let the blood vessel heal.  Stop the treatments I do for over 3 hours daily to control the chronic infections ravaging my lungs… You get the predicament, right? The treatment for this complication is to
• #7: stop the very medications I depend on to control CF.  And that’s why, on day 5 of my lungs’ revolt… with no end in sight, I reluctantly agreed to stop my daily treatments at my doctor’s urging.  It turned out my lungs were not ready to concede.
• #8: So it was no surprise that by day 6, a nasty lung infection was brewing due to the halted treatments. Perfect timing for my entire health care team to jet off to a CF conference across the country…  See! I told you -- no happy endings here.  Sprawled on my couch,
• #9: …it was seeming like my fate for the hospital for weeks of IV antibiotics was sealed. [1:50] And that’s when an email from my doctor appeared in my inbox.  “Emily—I’m boarding my flight and losing Internet…”. And a second later… “Emily – I just landed and
• #10: I can pick up where Dr. H left off” – that one, from my nurse practitioner.  And then another… “Emily – I’ve been fully briefed. You can name a time to be seen or keep coordinating by email. Let me know what works best for you” -- from the CF fellow holding down the fort at clinic.  And then the clincher,
• #11: a note from my doctor that he got in-flight internet to stay in touch.  THAT, my friends, is how it should be.  And yet, it didn’t end there. In a different sphere of the interwebs… I was receiving another outpouring of care. This time from people whose curriculum vitae
• #12: contained real-life experience – my CF compatriots.  They shared wisdom and the kind of compassion that can only come from people living and breathing with this disease just like me.  But it wasn’t just support. They told me about positional triggers to avoid and nutritional supplements
• #13: to strengthen my blood vessels—INFORMATION that I took back to my health care team, who was EAGER to hear it… IMAGINE THAT.  Pooling the expertise of lifetime patients… and their doctors… crowd sourcing at its best… and vetting it with my team...
• #14: virtually… and within hours.  THAT is what health care should be.  It should work THAT cohesively; it should be THAT smart, THAT collaborative, THAT genuinely caring.  So there I was… sick as a dog… closely monitoring my symptoms for the breaking point
• #15: for hospital admission…  But as sick and broken as my body felt, my soul felt whole. [3:23] And that’s when I realized… I’m one of the lucky ones -- with care that’s committed, collaborative, and, well, profoundly caring. But, you see, that’s precisely the problem.
• #16: But, you see, that’s precisely the problem. This care should be the rule, not the exception.  I know I’m lucky because it wasn’t always this way. There are thousands of people whose voices are silenced, whose bodies are reduced to inanimate recipients of this thing they call “care.”
• #17: They are living, breathing, sentient human beings… and they deserve better. WE DESERVE BETTER.  We all deserve the care I got from my providers 30,000 miles up in the air… and from my CF friends 3,000 miles across the country.
• #18: We deserve it… and we need it.  Because something amazing happens when our health care teams treat us as the INTEGRAL partners that we are. It produces BETTER outcomes and HIGHER QUALITY care…  Two years ago, it was participatory medicine
• #19: that allowed me to avoid a hospital stay. And today, it’s that same care that has helped keep ME, a patient with ADVANCED-STAGE CF, hospital-free for 3 years and counting…. [4:18] I am a living, breathing example of participatory medicine in action. I’m proof that it works.
• #20: And, I’m here urging you… to give it a try.  Let’s get to a place where I’m not “lucky” anymore… where patients’ desire to actively participate in care is not only accepted, but encouraged… Where our care nurtures our soul, respects our personhood
• #21: and makes us feel whole again. Because the truth is… not all stories in medicine can have happy endings. But it’s not really the ending that makes a story a success: it’s each chapter, each page, each sentence, each pause.  So, I’d like to propose a newdefinition for success in medicine… what if we change the goal from “happily ever after” to “we’re a force when we work together”  Thank you. [5:04]