Monday, January 27, 2014

"Not everything that is faced can be changed, but nothing can be changed until it is faced."

Tomorrow is our last day on IV's. Can I get a HELL YEAH!?! Our original 14-day plan didn't quite cut it, and with little improvement and a hospital stay under our belt we decided to forge ahead with another 14-days. I am happy to report that he is well. I will also hypothesize that by the end of the week he will no longer be well as the rest of this house is working on a nasty cold virus. We're washing hands, covering mouths, drinking our fluids and hoping for the best.
This month has been a blur. Between sick days, snow days, and school holidays, we've had our hands full. I've been doing a lot of work again on the C3N for CF. I've connected with a number of patients and families from other disease networks to see how we can work together to facilitate cross-disease learning; no need to recreate the wheel! I will soon need the help of a few CF patients or caregivers to participate in testing out a new learning network platform (think Facebook-esque but WAY better) that holds the opportunity  to connect patients and clinicians and share best practices and learn from one another. I know that these conversations are already happening on places like Facebook and Cystic Life, and I think the CFF is aware that they are happening, but I don't think they have any idea of how often or to what extent. While many of the conversations are useful, I think that we could make them more valuable by organizing them and using them to guide future discussion, or to teach others, patients or clinicians, about what's important to patients, and get feedback that includes recommendations from both physicians and even the CFF. Anyway, I have more info to share, but we're not totally ready to go 100% public with it yet, so if you're interested in learning more and possibly joining this little test group, shoot me an email - erin (dot) moore (at) cchmc (dot) org. You won't be disappointed!
I was invited by the Agency for Healthcare Research and Quality (AHRQ) and the Center for Education on Research and Therapeutics (CERT) to "share my unique perspective" at an upcoming conference that they are having, focused on Medication Management. I don't totally know what that means, and to be perfectly honest, I don't think they do either. If their goal is to improve medication adherence, they've got the wrong goal. If their goal is to use new and collaborative strategies to improve outcome for patients with chronic conditions, and finding ways to better medication management is identified as a part of that, then we're moving in the right direction. I feel like so many people are missing what their looking for on their road to improving "compliance" or "adherence" or whatever you want to call it. If you can find ways to meaningfully and appropriately engage patients in the creation and use of solutions that work for them, adherence will follow. As humans, we are so much more likely to continue doing something that we want to do, versus something that we have to do or are told to do. If all of these wonderful clinicians continue to put together ideas and papers on how patients can manage medication, at the end of the day they will have a stack of papers on how to manage medication and no one will be getting any healthier. Giving me more information to educate me on something indicates both that you don't believe that I know what I'm doing or don't understand and that by saying it another way will make me more likely to comply with your wishes. False. It is likely to annoy me and perhaps make me even less "compliant". If you ask me what I think, or how I would do it, or simply listen to me to gain a better understanding of what my barriers to adherence are, you will learn so much more. And the opportunity for us to work together on a solution that works for me will open doors for other patients to see that they too can participate in the design of a plan that works for them. It's quite simple really. A perspective to share I certainly do have, but I assure you that it is not unique. Ask most patients or caregivers living with a chronic condition and I think you will find a lot of similar thinking. I can't wait for the opportunity to share this perspective with ears who are looking for answers and willing to listen.
I need to put together a slide or two to tell people about myself and share my story. I want it to have an impact. I want them to really hear what I have to say. And I'm giving some thought into the best way to do that. I'll definitely be sharing it on here as well and welcome any thoughts on the best way to engage this influential audience of physicians, insurers, pharma reps, policy makers, and other thought leaders in the wonderful world of healthcare.
I just registered for this years March on the Hill, the CFF's advocacy campaign on Capitol Hill where State Advocacy Chairs meet with members of Congress on Capitol Hill to share the policy agenda of the Foundation. Last year's campaign happened during the "great snow-quester of '13", otherwise known as a warm and sunny afternoon in DC, so we were unable to meet with actual senators and congresspeople, but instead their staffers. Hopefully this year we will get the opportunity to share our stories directly with Ohio's decision makers! Following the March on the Hill is the CFF's annual Volunteer Leadership Conference. Talk about an amazing weekend, this event brings together the best of the best engaged and energetic advocates and fundraisers to share stories and encourage one another to continue to fight. Last year was our first time going, and I cannot wait to go back. 
We are also about to start our 2014 fundraising campaign for Great Strides. I need to put together a new video, but I'll leave you with last years. This has indeed been a long year for us health wise, but we will continue to hold onto hope.

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