Thread by @ePatientDave

@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy We can dig through all the e's but people keep adding to then, as befits a social movement. More important and useful IMO are example stories. I joined a patient community as did @jfreemandaily and each found useful info that helped save us. ...

@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare is highly engaged in self awareness, self monitoring, even defining her own protocols. Each of these is the opposite of a passive disengaged patient.
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@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare Another classic is @HugoOC who very much wants all his heart's data but @Medtronic continues to stiff him. So @AliveCor empowers him and enables him to be engaged and informed.
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@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare @HugoOC @Medtronic @AliveCor Of course the most awesome example is the #OpenAPS community- so engaged and entered they created their own open source device software, tuned to THEIR priorities, because #wearenotwaiting
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@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare @HugoOC @Medtronic @AliveCor Then you have amazing superpatients like @KimGoodsellROVA and @sharonfterry and @mattmight and @DavidFajgenbaum who literally extended the science about their condition. That's WAY more than passively accepting whatever the doc says.
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@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare @HugoOC @Medtronic @AliveCor @KimGoodsellROVA @sharonfterry @mattmight @DavidFajgenbaum Then there's @TalGolesworthy and @Doug_Lind_Say each of whom inverted a new kind of surgical treatment for themselves and others. Seriously!!

These are SUPER examples, as I say. Most e-patients are...

@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare @HugoOC @Medtronic @AliveCor @KimGoodsellROVA @sharonfterry @mattmight @DavidFajgenbaum ... Most e-patients are "simply" empowered and engaged. Which begs for definitions.

An empowered person thinks "What do I want?" and asks for it. In contrast, a disempowered / powerless person shrugs and says "there's nothing *I* can do about it" ...

@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare @HugoOC @Medtronic @AliveCor @KimGoodsellROVA @sharonfterry @mattmight @DavidFajgenbaum An engaged patient is one who's thinking, listening, responding, and is in action to create the health result they want.

Two obvious empowered engaged BC patients (among many) are @BraveBosom and @stales, who looked the situation in the eye, thought & acted....

@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare @HugoOC @Medtronic @AliveCor @KimGoodsellROVA @sharonfterry @mattmight @DavidFajgenbaum @stales Returning to the original question- how is an e-patient operationally different? How would you/we describe it?

We have personality traits, levels of activation, initiative, personal responsibility...

Maybe we can crowdsource "What would you want the world to know about is?"...

@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare @HugoOC @Medtronic @AliveCor @KimGoodsellROVA @sharonfterry @mattmight @DavidFajgenbaum @stales Side note: P.A.M. literature shows that more activated, engaged patients have better outcomes and cost less. But you can be top tier on the PAM scale and still be a totally passive "obeyer" patient.

E-patients are generally IMO more autonomous and self directed. /end?

@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare @HugoOC @Medtronic @AliveCor @KimGoodsellROVA @sharonfterry @mattmight @DavidFajgenbaum @stales @Threadreaderapp unroll

@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare @HugoOC @Medtronic @AliveCor @KimGoodsellROVA @sharonfterry @mattmight @DavidFajgenbaum @stales Ps this was not intended to squelch other contributions! Just needed to say it before I turn out the lights. Your turn.

See also "The first generation of e-patients" 2004 ncbi.nlm.nih.gov/pmc/articles/P…

@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare @HugoOC @Medtronic @AliveCor @KimGoodsellROVA @sharonfterry @mattmight @DavidFajgenbaum @stales Re "more activated patients have better outcomes & cost less," here's the 2015 @Health_Affairs paper showing outcomes *change* w changes in activation level: healthaffairs.org/doi/full/10.13…
👉 higher activation => 9/13 better outcomes
👉 lowest levels => worse on 7/13
👉 costs track too