Patient Centered Innovation with Michele Longabaugh RN (aka @CrazyAssCancer) – Thurs Mar 27 2014 @7:30pm ET (GMT-5)

Michele Longabaugh

Introduction by Lisa Fields

Twitter can be an amazing tool for making our wildest dreams and hopes come true. I believe these Tweets help tell our story for Patient Centered Innovation with our Healthcare Leader friend and colleague Michele Longabaugh also known as CrazyAssCancer on Twitter (See Below).

I’m pleased some Grand Rounds are now being LIVE tweeted. The Mayo Clinic has some video presentations of their Grand Rounds presented by Mayo Clinic staff members available for Medical Professionals.

How might patients be given the opportunity to be LIVED Tweeted when they are invited to present during Grand Rounds? This was the question I placed on Twitter. Our #HCLDR colleague and friend @Heydavemathews showed his interest right away and his enthusiasm can be seen in his initial tweets. Dave Mathews is a Co-founder, Leadership Team, Heath IT with the Health Innovation Lab. Dave also shares he is a physician –scientist in training putting the “lab” in collaboration. Dave took this idea, did his research, spent time with both Michele and myself and then designed, along with his colleagues, our special evening series Future Innovators Summit.

After a number of conversations and a great deal of excitement Healthcare Leaders and the Health Innovation Lab are collaborating to bring you Patient Centered Innovation with our presenter, friend, teacher, patient and healthcare leader Michele Longabaugh (@CrazyAssCancer).

David Matthews pictureDavid’s story

Twitter is such a great way to collaborate with #HCLDR because the students are all over the city, at hospitals, clinics, on campus and they will be tuning in from wherever they’re at. There’s a lot of excitement here as well!

Here’s a little more about the week:

The Health Innovation Lab is hosting the Future Innovators Summit this week (3/24-3/28). I know that sounds like a lott of buzz-words but just hang with me. The point of this week, and the point of our group, is to connect people from different backgrounds, who are invested in improving healthcare, and facilitating the generation of new ideas. We’ve lined up master teachers in Medicine and Surgery, like Dr. Tim Buchman, Director of Emory’s Critical Care Center who is talking about how IBM (#BigData) and the ICU will help patients and families, and chronic innovators like Prof. Arthur Koblasz (a former NASA scientist with an impressive record) from Ga. Tech who is inventing sensing RFID modalities that will allow us to predict and prevent patient falls.

But we’d be remiss if we didn’t highlight our week with the most important person in Healthcare. The Patient. The recipient of “care”. Lisa’s work through #HCLDR connected Michele and I, and after a few phone calls, tweets and e-mails we’ve arranged for a powerful, personal and public teaching moment. Michele will leverage her experience as a patient, mother, wife, nurse, and all around wise soul, to highlight frontiers in innovation, and drive home the point of our efforts to Innovate in the Healthcare space. We couldn’t be more humbled to be her students.

This is our “why” moment. Why Innovate? Tune in for #hilpresnts 7:30pm, on twitter, wherever you #HCLDR’s are, to find out.

More About HIL: We are a completely student run, interdisciplinary (MD’s, RN’s, BSN’s, PhD’s, PA’s, DPT’s, Engineers, MPH, MBA and so much more!) group trying to improve healthcare. We do so in 3 ways. First, our web presence allows us to connect folks, and tell the story of innovation. Second, we host signature events (ie., Panels, Experiential Learning) that connect folks, and highlight innovation. Third, we use our Labs to connect prominent faculty with core groups of students to tackle issues over the long term.

If you’re interested, check us out at healthinnovationlab.org We’d love to hear your feedback, and ideas.

Michele LongabaughMichele’s story

It all started with tweets after HCLDR…the idea was in full swing on March 12th So we planted, grew and are about to birth this baby in 2 weeks time! You and I…we go back to November when I luckily stumbled across your chat! Dave came to my feed 2 weeks ago and #HCLDR drove that connection! What he is doing out there on HIL is incredible…I think they have internal momentum that once transferred beyond their circle has explosive possibilities!

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.

My blog is my personal catharsis. I never dreamed that those who read it 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.

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 met. – Example: 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 for patients when patient 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?

 

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