Wednesday, September 21, 2011

#epatcon @DCPatient - Donna Cryer - Patient Advocacy in 3D + Brian Loew of InspireHealth + @RAWarrior

  1. The Power of e-Patient Communities

    Empowered patient, DCPatient, and CEO, CryerHealth
    Patient Advocacy in 3-D: This presentation, by liver transplant recipient and patient advocacy blogger, DCPatient (Donna Cryer), will describe how thinking about patient participation in healthcare as an immersive 3-D experience instead of a flat 2-D social media experience can transform personal and public advocacy on health and healthcare delivery issues. Patients as makers of healthcare policy, rather than just commenters on the gaps, flaws, and dysfunctions in policy, is the next stage of patient advocacy evolution. 1. How has the aggregation of patient voices in online communities created platforms for advocacy? 2. What is the difference between personal and public advocacy? 3. How can we translate online activism into actual policy and systems change? 4. What are the barriers, internal and external, to translation of healthcare 2.0 to healthcare 3-D? 5. What opportunities are there for patient advocates to influence policy?

    CEO, Inspire
    Empowered patient
    Standing Up For Patient Rights: A Case Study: Bladder cancer survivor Thomas Sawyer, 61, of Michigan made international headlines last fall after a botched security check by TSA agents at Detroit Metro Airport. Empowered by his Bladder Cancer Advocacy Network online community on Inspire, Sawyer is helping to shape US airport guidelines for appropriately screening travelers with medical conditions such as ostomies and prosthetics. In this session, Sawyer and Inspire CEO Brian Loew will describe how Sawyer drew support from his online group and ultimately went public with his story, prompting an apology from TSA Administrator John Pistole and a national review of TSA policies and practices.

    "RA Warrior", Rheumatoid Patient Foundation
    Extending e-Patients' Essential Role: Advocacy efforts help patients to be better informed and have a greater voice in their healthcare, but the role of patients and patient advocates does not end there. Patients can play a significant role and offer essential input pertaining to treatment approaches, clinical training, and scientific research for a complex disease like Rheumatoid Arthritis.

Donna Cryer - 

How can we make patient advocacy more like the movie Avatar.

What made Avatar so great:
1. Great stories
2. Cutting edge technologies
3. Immersive Experience.

1D - In health care the first dimension is the 1 day visiting on the hill to Congress.

2D - Discovery of Bulletin Board of transplant recipients. Using patient shared information to change clinical care. This is now common place.

2D - What is the recipe for the next phase:

Traditional Advocacy + Technology + EPatients. = New Model of Policymaking

Brian Loew & Thomas Sawyer

Thomas Sawyer, a bladder cancer survivor, tells a story of an incident with the TSA when traveling through Detroit.

Patients have real power and can change public policy.

Kelly Young - @RAWarrior

Rheumatoid Arthritis sufferer. 

Nothing prepares you for the ill defined cruelty of RA.

Patients  should be engaged in developing tests to assess complex diseases.

Patient input makes sense for clinical trials

Patient input in advertising

Patient generated data should be used to create drug data sheets.

Researchers can collect patient data for benefits - but not side effects.

I was struck by RAWarrior 's expression of Diabetes "Tight Control leads to improved mortality"  Just think of the bizarre wording so typical of the health industry

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