9:05 - 9:50 amFriday, September 27
Plenary Hall
Part 1: The new patient
Plenary Hall
Part 1: The new patient
Host, Just Talking Podcast
Co-Founder and Co-Moderator, #BCSM
Paramedic
Founder, Chronic Curve
Blogger, 66 Roses
This session will examine the evolving definition of what it means to be a patient in 2013. We will look at the evolution of the patient relationship (patient-patient, patient-caregiver, and patient-doctor)... Read more

Description

This session will examine the evolving definition of what it means to be a patient in 2013. We will look at the evolution of the patient relationship (patient-patient, patient-caregiver, and patient-doctor) and the role technology and empowerment can play to involve patients in their own care.

Occasionally gaming, often podcasting, living with type 1 diabetes.

That's the short version.

I was diagnosed with type 1 diabetes in the fall of 2002 during my freshman year at Virginia Tech. For the next 4-ish years I coasted through my diabetes management, likely supported my my pancreas' honeymoon phase.

I didn't join Twitter until 2008 but one of the first people I followed was sharing her experiences with her own diabetes (@sixuntilme). After a few months I started to pay attention to her blog, then other diabetes blogs, then I started sharing my experiences with diabetes on Twitter. Up until this point, I didn't know anything about the diabetes community, or the impact it could have on my life.

January 1, 2009 I started my own diabetes blog. Three years later I'm still blogging, sharing the ups and downs of life (sometimes diabetes related). I actively participate and advocate on behalf of the diabetes community whenever possible - be it Twitter, Tumblr, Facebook, Blogging, or even my Podcast, I'm all about making connections and sharing stories.

I'm not the most thought-provoking person on the internet, but that hasn't stopped me yet.

 

Jody Schoger is a free-lance writer, blogger and advocate currently living with metastatic breast cancer. Following her initial diagnosis with cancer in l998, she transfered her experience in public relations and marketing to serve those affected by cancer. Her writing has been featured in OncologyTimes and Cure online. She has been frequently quoted in USA Today, and appears on SIRIUS radio's "Doctor Radio" discussing cancer survivorship and patient engagement. She has served as a stakeholder reviewer for the Lance Armstrong Foundation, the DOD's CDMRP and is both a Project Lead and Alamo Breast Cancer Foundation Scholar. Along with Alicia Staley and Deanna Attai, MD, she is a co-founder and co-moderator of #BCSM, the breast cancer social media community.

When I started my website, Chronic Curve, back in 2010, I did not knowingly enter the world of patient advocacy. What started as a personal outlet has grown into a community for other adults with chronic diseases and chronic pain; specifically types of autoimmune arthritis and auto inflammatory diseases.

Patient advocacy—especially in the context of social media outreach—has really only just started to establish its place in health care. The growth of Chronic Curve has nurtured an incredible passion for improving the doctor-patient relationship and utilizing social media as a tool to connect patients with their clinicians, improve communication, and break through the stigma of chronic pain and chronic pain management. While I bring many ideas, a unique perspective, and my own personal experiences to the table, I want to learn how to better build a bridge between patients and their physicians and grow as a more effective patient advocate.

I hope to share and brainstorm ideas with others; create lasting connections with fellow attendees; better understand the field of patient advocacy and innovation as a whole; and gain fresh perspectives from individuals with far more knowledge and experience than myself. ePatients are far more powerful when we come together for the cause, and it is community that advances awareness, funding, innovation, and ultimately success in improving patient care. I hope to gain insight into how others work to improve the doctor- patient relationship, how other patients in different advocacy communities are sharing information with their physicians, and gain outside perspectives on patients and issues like chronic pain management and patient care.

Erin Moore is the mother of 4 children, ages 5 and under. Her 3 year old son, Drew, has cystic fibrosis. Erin is involved with the Cystic Fibrosis Foundation as both a fundraiser and as their state advocacy Chair, sharing the policy agenda of the foundation with key decision makers in government to let them know how the decisions that they make can positively or negatively impact the CF community.  She is the chair of the mission committee for the Cystic Fibrosis Foundation, acting as the face and voice of the CF Foundation mission by representing local families and care givers from the Cincinnati/Dayton area and supporting the chapter’s fundraising and advocacy needs by sharing her story. Erin also chairs the parent quality improvement team for the pulmonary unit at Cincinnati Children's Hospital and works as a parent TOUCH volunteer in the NICU. She meets with families currently in the NICU as someone who formerly had a child there to share a message of support and hope.

 

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