We the Patients - A Must Read

Background: When I heard that fellow advocate, Matthew Zachary wrote a book about navigating our healthcare system and patient advocacy, I knew I needed to read it. I have known Matt since the mid-2000's. We connected through the LiveSTRONG Summits and LiveSTRONG Hill Day ( which he mentioned in his book) . He has been outspoken and a driving force behind changes in health care for AYA's and other cancer groups and an influencer of cancer advocates through the years. 

We the Patients is a must read for patients, advocates oncologists , health center administrators and dare I say every Congressman and Senator ! The book provides the history of the healthcare system in the US- the good, the bad, and the ugly. I have witnessed some of the ugly that has occurred through the past 20 yearsyears. 

Matt's diagnosis with a brain tumor is the thread between the chapters. Some of the topics he discusses includes the ACA, the insurance industry, denials of care, cancer debt and the change in survivorship care.  He highlights the work of advocates such as Maimah Karmo,  and Alli Ward,  physicians,  Dr Pat Ganz and Dr Harold Freeman to name a few and organizations such as Cancer Nation, LiveSTRONG whose work has helped improve conditions for cancer survivors nationwide. He stresses how we can and need to be the voice of change.  Hill days are not enough. We need to share our stories, be engaged in policy and vote. 

"I never set out to be a cancer advocate/mouthpiece/champion/ rabble-rouser but that is exactly where I ended up. " We all should be thankful that Matt has been exactly that. This book can make a difference in every cancer patient’s , caregivers and policymakers life.  

If you want to buy a copy on Amazon, please visit https://tinyurl.com/a84npsxv

Dee

Every Day is a Blessing!  

Hashtag Collections and Communities - JCOCCI Article

I am so pleased to have co-authored and to have the #gyncsm community and chat be a part of a newly published article in the JCO Clinical Cancer Informatics journal.

Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities  

"Cancer tag ontology evolved from patient-centered, disease-specific, Twitter-based chats as a cooperatively designed system that has grown in use from 2011 to 2017. This article provides guidelines, challenges, and opportunities for using hashtags to develop online communities of interest."

Thank you Matt Katz, MD for spearheading this important work for physicians, patients and health care providers. 

Dee                                                                                                                                                      Every Day is a Blessing! 

 

 

 

 

I'll be a Panelist at e-Pharma

I am very excited to have been invited to participate in the 12th Annual e-Pharma Summit in NYC as part of a panel discussion session titled " Social Media for Pharma: A Match Made in Heaven or Hell?". The panel is made up of health activists like myself who use social media to raise awareness of illnesses. We will be discussing whether or not the educational social media programs of pharmaceutical companies actually affect health outcomes. 

The 12^th annual ePharma Summit, takes place on March 4 – 6 . ePharma is attended by pharma folks and the content includes interesting case studies and  keynote presentations. This year the Summit includes insights into healthcare reform and its effect on pharma and a panel on Electronic Health Records. Industry leaders including Dan Lyons, formerly of Newsweek and Fast Company and Chris Frank of AmEx and author of Drinking from the Fire Hose: Making Smarter Decisions without Drowning in Information are among the speakers.

What’s unique about the Summit's format is its' collaborative nature . This means the better the quality and diversity of the audience, the better the conversation and more valuable the outcome for all those attending. 

If you are interested in attending please Click here to visit the website and my personal discount code for 20% off the registration rate is XP1806SPKDS . 

Dee
Every Day is a Blessing!