I may write something up at some point (& I may not) ... want to save a few spots & a few notes.
google-patient / doc
the internet
disease/health communities
forums, bloggers, epatients - relationship w/ official orgs, official patient reps
health literacy
Risk LiteracyBiastop down cultures
Patient-centered care
agenda, priorities
Influence
Cliques, diversity, agreeableness, likability
best-interest-at-heart vs $-politics-power
Patient safetywhen things go wrong - transparency / sharing stories / accountability / learning from
yelping
hosp/doc rating/performance data/stats
the little guy
kindness, empathy, respect
responsibility
labels
which patient advocates are heard & which ignored
Legitimacy, credentials, recognized & respected, expertise, reputable
Knowledge, experience
Communication and/or negotiation skillsdefensiveness, mocking, gossip, shunning
Reviewing your (child's) medical records Individual consumer comments / FDA
Representation
getting past smile & nod patient engagement (Sus Fx)
being heard
good info vs dangerous/inaccurate/pseudoscience
doctor-patient relationship
intentions
Pride, humbleness
DIY patient stuff - apps, tests, etc
vulnerability
Social Mediashared decision making
caring, friendship, deep support vs professionalism, boundaries, health care, time constraints
privacy
conflicts of interest
Trust
Unmet patient needs
Roles
I seem to be in a bit of a philosophical mood.
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"How to Know Whether to Believe a Health Study"
http://www.nytimes.com/2015/08/18/upshot/how-to-know-whether-to-believe-a-health-study.html?rref=upshot&smid=tw-upshotnyt&smtyp=cur&_r=3&abt=0002&abg=0Ultimately, no single study is perfect. Whether it’s a randomized trial or a nonexperimental one, one can never be absolutely sure study findings are valid and applicable to you. The best bet is to wait, if you can, until evidence accumulates from many studies using a range of methods and applied to different populations.
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Tweeted by @IgECPD
A group of UK bloggers get their allergy & asthma questions answered by @senseaboutsci Allergists and researchers bit.ly/1Nt5gTA
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"Q&A about allergies with Sense About Science"
http://www.mumsnet.com/qanda/sense-about-science-allergies-qaThis seems nice ... often small groups of patients don't have access to experts like that.
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Tweeted by @Paulflevy
"Empathy without action is empty"
http://runningahospital.blogspot.com/2015/06/empathy-without-action-is-empty.htmlI think we have to understand that there is often a corporate separation between the public affairs side of the house and the clinical governance side of the house in the hospital world. The former takes money and creative thought. The latter takes an unceasing commitment to clinical process improvement and especially to transparency.
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Tweeted by @HeartSisters
"How to Get the Best Care From Your Doctor"
http://www.nextavenue.org/how-to-get-the-best-care-from-your-doctor/This is an uncomfortable truth about health care that people tend to learn the hard way. The story usually goes like this: You get sick or otherwise put your health care to the test. You suffer through sub-optimal health care and learn first-hand about the pervasive flaws. And so you slowly become a savvier wrangler of the health care system, which is sometimes called being an engaged and empowered patient.
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Tweeted by @SusannahFox
"Champions of Change"
http://susannahfox.com/2015/07/10/champions-of-change/By listening to each other, we can understand the pain points on both sides and recognize when we need to revisit existing policies, practices, and systems.