Patient Centered Innovation Take 2 – with Michele Longabaugh – April 1 2014

Michele LongabaughIntroduction by Lisa Fields

This past Thursday March 27, 2014 Healthcare Leader #HCLDR was honored when we were given the opportunity to partner with @heydavemathews @erikreinertsen @paparish and other healthcare leaders from the Health Innovation Lab.  This collaboration all began with a few tweets explaining our vision of a patient not only leading a Grand Rounds but given the opportunity to also be LIVE tweeted.
Dave Mathews a physician-scientist in training at Emory University School of Medicine began to work on this idea almost immediately. Michele Longabaugh (@CrazyAssCancer) and I were honored and amazed by how quickly and efficiently Dave began to make this vision a reality. The Health Innovation Lab designed a remarkable Future Innovation Summit and highlighted Michele in a combined tweet chat with #HCLDR. HIL Presents: Michele Longabaugh.

It was exciting and gratifying to see so many people both from #HCLDR and #HIL gather together to listen and learn from Michele, for indeed she has so much to teach all of us. Michele has a clear vision along with her knowledge, skill and ability so I personally and professionally wanted the night to be perfect.

Michele has Stage 4 anal cancer. She has continues to beat the odds and all expectations. She often shares her time is precious. She’s transparent regarding this fact in her blog, Keynote talks and when you make the opportunity to talk to her. Her consistent focus is

What can I do to ensure patients don’t have to experience what I’ve gone through.

There are times when a guest or topic is so powerful and the learning within the community is so rich Colin and I feel it’s worth repeating. This is certainly the case with our Guest this week Michele Longabaugh. We hope you will be able to join us.

For those of you who are new to our Healthcare Leader tweet chat this blog post helps explain our culture, goals and guidelines:
Our Goal: Providing Professional Development & Leadership For Health Care Leaders.

Michele’s Story

I was diagnosed with Stage 4 Anal Cancer in February 2010.

Not only did I have a rare stigmatized form of cancer, I was told I had an even rarer form of metastasis located in my bone. As you can imagine this was completely devastating for both me and my family. I started my blog www.ihavebuttwhat.tumblr.com in January of 2010 in the midst of the initial diagnosis. Accompanying the devastation of a rare cancer in advanced stages my family and I were also weighted with the stigma and shame that is unwarranted but, none-the-less, accompanies anal cancer.

My blog became my personal catharsis. I have been writing what I have been feeling and experiencing since that day. I had an overwhelming desire for any information about my cancer and its available treatments. I was baffled and frustrated when my internet searches turned up little information. It took hours to find anything useable and the few support sites available were not easily found.

I was stunned that in the information age that we all live in that this was the best they could do for my cancer. I soon discovered that anal cancer was not alone. It was clear to me that many rare, stigmatized, and otherwise undesirable cancers were underserved on the internet. Not only did this pose a challenge for me, but for the health care providers I entrusted with my care. Rarity, stigma, lack of infrastructure on the web and within the healthcare system for my disease complicated matters.

As a registered nurse I knew this was not acceptable and I knew things could be done differently. Better. Patient centrically. Despite all my challenges and the unknown road that lay ahead I committed myself to changing this. My initial aim was to organize a web site to offer hope and help for not only anal cancer but any of those that exist “below the belt” and are underserved. All cancer patients deserve easy access to reliable information and much needed support. So www.52shadesofblue.com was born.

I never dreamed that those who read my blog might connect so deeply with my experience. My desire to release the burden of the stigma of anal cancer by simply revealing my truth in writing on some crazy blog has not changed. I never imagined that it would reach so many and could become a become a catalyst for change not only for patients with rare and stigmatized forms of illness but for the medical community that stands poised to provide care and support for humans inflicted with rare and complex cancers and disease.

The questions below were born from my experience with the healthcare system that is evolving with innovation and incorporating these tools into hospitals and clinics. It has not been easy and fraught with pitfalls.

Attention must be paid to keep the patients and the HCPs needs on the forefront of innovative development. I say this because when I was most vulnerable, recovering from a thoracotomy to remove a cancerous nodule from my lung, the system failed me. I awakened after my surgery to the most horrific pain imaginable. The epidural put in place in numb the pain was not working. My young nurse, using her computer and a defined protocol asked and documented my pain level at a 10 (the worst pain ever for me) She then called the surgeon (per protocol) He declined to order me pain medicine based on the fact that anesthesia should be handling my pain as I had an epidural. Anesthesia refused to order me pain medicine as they just wanted to run the epidural and wanted the surgeon to give me other adjunctive pain relief. My young nurse was inexperienced in patient advocacy, but certainly did her job well as far as using the innovative tools to document her all night quest to get me pain relief. I lay in pain in an intensive care unit all night long. The patient.

As an experienced registered nurse I find this hard to believe. How could I not advocate for myself? Well, I was vulnerable and in intense pain and in no condition to do it. I was in the most “reputable” ICU in town. My family and friends had gone home secure in the knowledge that I would be cared for well. For all the computers, EMR, protocols, and most advanced technology my most basic need was not met. It’s over now and I am not here to complain or even want an apology. My desire is that this doesn’t happen to anybody else and to do anything I can to raise the consciousness of HCLDR to be mindful as we innovate, incorporate that innovation to our practices and embrace the changing paradigm of medicine that the patient remains the center of that dynamic.
Questions

  • T1: How can we as #HCLDR maintain/increase patient centricity in a world of increasing innovation?
  • T2: How do we ensure both patient needs and #HCLDR needs are met. Ex. Need to document and follow standard of care vs ensuring patient remains center of care as the benchmark.
  • T3: How do we ensure #HCLDR are empowered to advocate when patients needs are not being met? i.e.: pain relief, physician interaction, emotional support
  • Closing Thought: What’s one thing you’ve learned tonight that you can take to your place of influence to help a patient tomorrow?

 

2 comments

  1. […] Longabaugh (@CrazyAssCancer) – Patient Centered Innovation – Apr […]

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