This page contains links to content discussed in the e-Patient Boot Camp today.
- Society for Participatory Medicine, its journal, its blog e-patients.net
- Deloitte Shift Index 2011 web page, PDF (5MB). Participatory Medicine is on page 84 (pg 88 of the PDF).
- My viral TEDx video “Let Patients Help” (including “the e-Patient Rap” written by Keith Boone)
- ACOR community – great example of a patient community
- CaringBridge – create your own support “blog” without being a blogger
- e-Patients White Paper – check the Seven Preliminary Conclusions – in Chapter 2
- Ferguson Report – e-Patients as Medical Researchers
- Health Leaders magazine
- Peer-to-Peer Healthcare Pew Internet – Independent Research
- Seattle Mama Doc – Wendy Sue Swenson
- On Twitter and Facebook @MacObGyn MacArthur OB/Gyn
- Simplee EOB for understanding insurance Explanation of Benefits
- Visible Body – to understand anatomy
- Open Notes project by the RWJ Foundation
- Hugo Campos – Give me my data at TEDx Cambridge
- Markle Foundation Download Health Data capability – Blue Button (also BlueButton.org)
- Regina Holliday‘s blog
- Monique Doyle Spencer’s blog about Xeloda side effects
- “Mama Lion Engelman” story
- 1 in 100 website (pediatric cardiac defects)
- RA Warrior – Kelly Young’s RA patient community
- Cure Together
- Raw Data Now – Tim Berners-Lee’s TED tax
- Dartmouth Atlas of Health – unwarranted practice variation
- Gartner Research Methodology Hype Cycle
- Create Space -self-publish on Amazon
- The Patient Activation Measure
- Medication help GlowCaps
- Health Record Banks
- MyHealthStory – video archive of patient stories
- Quantia MD physician community
- Another doctor community Doximity
- WegoHealth TV
- Inspire patient communities
- Patient speakers bureau SpeakerLink.org
Pat Mastors says
(Did I take a nice picture, or what?)
It was my pleasure and priviledge to be there yesterday. I’m still reeling from all I learned, and was thrilled to meet so many great people!
A BIG shout-out to Shwen and Edelman, hosts for this important event! For the first time ever, we Patient Advocates were invited to the “Penthouse” level (figuratively and physically) to participate in a meaningful disussion about how we can help improve health care. It was energizing and thought-provoking….and smart business on many levels.
Also, can I say enough about Dave? He, like us, bemoans the fact that it costs a lot of money to attend most conferences and seminars about patient engagement – a cost that ironically puts attendence by most patients/advocates out of reach. Well, Dave walks the walk. Patients got to attend for 10 bucks. Hats off – and an ePatient salute – to a guy who really means it when he says “nothing about us, without us”. Your generosity in sharing all you’ve learned, your collaborative approach, and your charisma as a speaker are instructive to all of us who hope to make a difference!
From DiabetesMine – Allison’s feedback has great nuggets and videos with Dave and other participants.