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As a precursor to the 2011 e-Patient Connections conference, a group of 30 patients, industry thought leaders, and health activists gathered in a Philadelphia meeting room on September 19, 2011 to discuss the future of a healthcare system where empowered, engaged, and educated electronically-connected patients take control of their health. Fuelled by access to the latest health and medical content online, mobile technologies to facilitate access and control, and the ability to engage with other patients on a global scale, these e-patients are rapidly becoming an integrated part of the health and treatment continuum and refuse to sit quietly as bystanders waiting for instructions from the medical and health professionals around them. Attendees represented a wide range of therapeutic conditions and disease states, including ADHD, diabetes, HIV/AIDS, cancer, multiple sclerosis, fibromyalgia, lupus, cerebral palsy, Crohn’s disease, and rheumatoid arthritis.The group was assembled by leading digital marketing agency Klick Pharma, top online healthcare publisher HealthCentral, the newly formed nonprofit think tank the Digital Health Coalition, and with support from WEGO Health. “Digital will forever change healthcare with the same transformative and democratizing forces that have disrupted the entertainment and communication industries,” said Jay Goldman, Vice President of Strategy for Klick Pharma. “We brought this group together and facilitated the conversation because we are all patients and all patients will soon be E-Patients. The rise of digital technologies is just speeding the pace of that change.”
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E-Patient Bill of RightsProject Overview and Next Steps
Mark BardDigital Health Coalition
Agenda
• Introduction from Jay Goldman (Klick) • Introduction from Lucie Leblois (HealthCentral)
• Project Overview from Mark Bard (Digital Health Coalition)• Motivation for Project • September 19 Workshop• The Initial 6 Principles• The Facebook Page – www.epatientbillofrights.org
• Next Steps with the Project
Jay Goldman
Lucie Leblois
Mark Bard
Agenda
• Introduction from Jay Goldman (Klick) • Introduction from Lucie Leblois (HealthCentral)
• Project Overview from Mark Bard (Digital Health Coalition)• Motivation for Project • September 19 Workshop• The Initial 6 Principles• The Facebook Page – www.epatientbillofrights.org
• Next Steps with the Project
Roundtable Participants
• Eileen Bailey (healthcentral.com/profiles/c/1443)• Mark Bard (digitalhealthcoalition.org)• Alex Baldwin (healthcentral.com/about/alex-baldwin/)• Ann Bartlett (healthcentral.com/profiles/c/9993)• Phil Baumann (philbaumann.com)• Robert Breining (poziam.org)• Dave deBronkart (epatientdave.com)• Bob Brooks (wegohealth.com )• Bennet Dunlap (ydmv.net)• Lisa Emrich (brassandivory.org)• Jay Goldman (klickpharma.com)• Joe Farris (digitalhealthcoalition.org)
Roundtable Participants
• Amy Gurowitz (mslol.wordpress.com) • PJ Hamel (healthcentral.com/profiles/c/78)• Mark S. King (myfabulousdisease.com)• Sarah Krug (e-patients.net)• Lucie Leblois (healthcentral.com/about/lucie-leblois/)• Tiffany Peterson (www.tiffanyandlupus.com)• Jenny Pettit (myuiiblog.blogspot.com)• Casey Quinlan (mightycasey.com)• Teri Robert (helpforheadaches.com)• Rudy Sims (rudysims.com)• Michael Weiss (hospitalpatient.com)• Kelly Young (rawarrior.com)
Photos from 9/19 Roundtable Copyright© Klick 2011 All Rights Reserved
Photos from 9/19 Roundtable Copyright© Klick 2011 All Rights Reserved
“Story” Boards Graphic Recording by www.imagethink.net
Graphic Recording by www.imagethink.net
Graphic Recording by www.imagethink.net
Graphic Recording by www.imagethink.net
Principle #1
• Shared access to my data
Principle #2
• Attitude of collaboration and overall respect
Principle #3
• The patient is the largest stakeholder
Principle #4
• Transparency and authenticity across all areas
Principle #5
• Voice of the patient is a legitimate (clinical) source
Principle #6
• The right to efficient communication with providers who utilize the technology that we need
Graphic Recording by www.imagethink.net
Graphic Recording by www.imagethink.net
Facebook Page
www.epatientbillofrights.org
Facebook Page
www.epatientbillofrights.org
Agenda
• Introduction from Jay Goldman (Klick) • Introduction from Lucie Leblois (HealthCentral)
• Project Overview from Mark Bard (Digital Health Coalition)• Motivation for Project • September 19 Workshop• The Initial 6 Principles• The Facebook Page – www.epatientbillofrights.org
• Next Steps with the Project
Next Steps
• Using Facebook for outreach/education• Listening to the market in Q4• Incorporating feedback from
physicians• Incorporating feedback from pharma
and device companies • Working towards white
paper/principles in early 2012
E-Patient Bill of RightsProject Overview and Next Steps
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