Partnership With Patients Summit: IGNITE

Partnership with Patients Summit – IGNITE event

**** Please remember these are my PERSONAL notes from this session and done during the session so excuse the typos and remember these may be my thoughts and impressions!  AND This is a PANEL with some Power Houses so it will be organized by How and when they speak???

  • Opening Ceremony for the IGNITE – Thank you Jari Holland Buck
  • Sharing Saves LIves: WE are the Key to the Cure – Joshua Rubin, JD, MBA, MPH, MPP
  • Will Regina Holliday become Healthcare’s Rosa Parks?
  • Building a Patient Movement
  • Every Five Minutes in the USA: 6 people die of cancer
  • We are the Key to the Cure: Two of the Least Well Utilized Resources
  • A Patient-Centere Learning Health System
  • Sharing our Stories: The Walking Gallery
  • IT-Enabled Everyday Sharing 
  • We need to Believe in the future 
  • Look for Inspiration to Persevere
  • Hold Firm to Convictions 
  • Developing Innovative Solutions to challenging problems 
  • Working together to give the gift of health to our children and our nation – build a Learning Health Community
  • “Together We Will” 
  • Holding Hope at the Intersection of Physical & Mental Health – Ann Becker-Schutte, PhD
    • navigating the intersection of mental health and physical health
    • can’t disconnect this “stuff” – we are WHOLE people
    • environmental factors do affect our brain and how we deal 
    • sometimes you need to take a minute and “breathe” – be IN your present moment
    • Find the joy wherever you can 
  • Dying in Peace: New terms of engagement – Bart Windrum
    • only one euphemistic words for dying is Dying
    • Bart’s end of life experiences and biases – 
    • Matrix Basics, Endpoints – we can be healthy / we can be dying / we can be neither 
    • Dying: Onset / Progressed / Endstage 
    • Ethics or Euthanasia? 
    • Decision Paralysis?  
    • Possible new terms to qualify dying: (list) 
    • To die AT peace we must die IN peace. 
  • We are One: – Susan Hull
    • Lets synchronize our voices!
    • Why I am here? Like all of Us – we wear many hats
    • Ask for your Health Records
    • Putting the “I” in Health IT
    • Patient Centered Care Coordination Health Info Technology
    •  Health and care is local, global, mobile 
    • Health is Social – Health is a function of participation
    • New Players and New Data Mashups
  • TEchnology-Powered Grassroots Empowered Patient Movement via “Health Care Social Media”  – Michael Wiess
    • Coping with Crohn’s Disease – Chronic & incurable – I want to get control over my life
    • Strategy for using HCSM platforms
    • Good BROAD Starting Point – Wikipedia
    • Look for an organization – look at HealthCare”portal” websites
    • Yahoo! Groups – “Living with Crohn’s Disease” 
    • Google Alert – “Crohn’s Disease”
    • Subscribe to Bogs via “RSS” Feeds 
    • Subscribe to Podcasts / Vlogs 
    • Facebook Groups / Communities
    • Twitter using “TweetDeck” – Instantaneous Engagement 
    • Maximizing Twitter using Hashtags & Tweetchats
    • Virtual Patient Communities 
    • Interact with other Crohn’s Patients – finding people like you
    • Free-form Blog & Networking – look for “tags”
    • mHealth – Using Mobile Phone 4 Healthcare – Apps (ZocDoc) or devices attached
    • Result of HCSM Patient Grassroots Movement – you become Empowered & Assertive Patient
  • What’s MyM3 – Steve Daviss, MD DFAPA @HITshrink
    • WhatsMyM3.com – mental health app: Depression / Bipolar / PTSD / Anxiety
    • Who: Depression is leading cause of disease burden in the world
    • Increased costs of chronic medical conditions when mental illness co-exists
    • Also M3Clinician.com portal for providers & clinicians can keep track of their patients
    • #1 Med App on iTunes for about 3-days
  • (Social) Media Matters – Carolyn Capern
    • Social media strategist
    • Fred Holliday was her professo
      r
    • The Gap with the “older” generation and new technology – No More “Business as Usual”
    • The truth – it is about being Social 
    • Building Relationships
    • Creating Value 
    • Offering Emotional Connections 
  • The Medium and the Message
  • Heath Care & the Web
    • what’s is happening to me and what can I do about it?
  • We’re Talking. Who’s Listening? 
  • What do we want? – Listen to me / Talk to me / Meet me where I am
  • Don’t be left Watching 
  • IGNITE: From Flare to Flaire – Amanda Greene
    • Living with Lupus almost 29 years starting at 15 years
    • My life with Lupus??? “once I decided I wasn’t going to die I had to DO something”
    • Became an advocate
    • LA Lupus Lady in DC and NYC – Onstage in NY with TiffanyAndLupus
    • LA Lupus Lady the caped crusader
    • What is “Lupus Style”? – Lupus Flare to Flair!”  Flying “like a Jet” with my cape not he 50 yard line!
  • Breaking Boundaries – Erin Gilmer
    • SXSW Interactive – currently living in Austin TX
    • Health 2.0 Austin chapter – breakdown the silos to let people connect
    • when we come together we can learn to fly
  • How Asking What Things Cost can Shift the System – Casey Quinlan
    • The Big Question no one is asking – there is an elephant in the room
    • we are encouraged to ask questions but not the Biggest one
    • HOW MUCH IS THAT?
    • I know plenty about markets and consumer behavior – healthcare is the only consumer-facig industry with NO price transparency 
    • The only way to really bend the cost curve is to start asking “How Much Is That?” 
    • Even those of us with “The Chronic” know this is a critical question
    • To survive trips through the health care care wash with our wallets intact and the system sustainable (too quick..!)
  • Hospital Infections: Prevention is the Key – Jari Holland Buck
    • The purple wristband is generally accepted as the DNR wristband color
    • The outcome we all seek is to get well and to take the patient home
    • Whatever our role we must be proactive 
    • You MUST do different things – C.Diff and MRSA Must both Wash hands / Use alcohol rub / wear gloves
  • The Patient Pod: Putting Engagement Tools in Patients hands – Pat Mastors
    • Hospital-acquired infections
    • No place for Personal stuff – how does the patient clean their hands? They can’t
    • The Patient Pod combines everything that you need to be a safe patient – essential types to staying healthy
    • Results: 7 hospitals in 5 states
    • wants this to be like the shampoo in a hotel
    • Reduce harm across are transitions & 30-day readmissions
    • $19.95 
  • Do you see what I see?  Lisa Fields
    • “I am in my spicy years” 
    • Quilting Muriel: 94 Twitter Queen
    • Tom Peters – @tom_peters 
    • @GrandmaOnDeck – on her 80th birthday she did a 5k with her daughter
    • Humans are little tiny hope machines @marksphon
  • No ore Clip Boards: The Behind the Scenes Struggle for Medical Records – Eunita Winkey
    • Electronic medical records save lives 
    • Unnecessary errors in Eunita’s medical records in age, name and IVF contributed to her unnecessary hysterectomy 
    • Awareness to empower patients and caregivers
    • Advocate for better health care and electronic medical records 
    • ATWINDS, Foundation, Inc – A Teacher’s Work is Never Done Services
    • Teach Society to share information about EMR
    • Engage in the Technology trends for medical records
    • Adhere to making medical records as available as credit records
    • Empowering the youth on the importance of medical records
  • Hepatitis Outbreaks National Organization for Reform (HONOReform) – Evelyn McKnight
    • the nurse reused syringes – 99 people contorted Hepatitis C from this accident – totally preventable incident
    • in the past 10 years there have 130,000 Americans because of reused medical equipment that was designated for single use 
    • One Needs / One Syringe / Only One Time: Safe Injection Practices
    • Safe Injection Practices Coalition – The One and Only Campaign
  • Give a DaM About Implants – Joleen Chambers
    • Failed implant alliance 
    • What happens with your implant fails?  You get the run around 
    • Medical devices are not ALL tested
    • 30,000 serious events related to Medical Devices were reported to the FDA alone in 2011
    • Want some kind of guarantee that this is going to work 

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