our next speaker is Josh Robbins
a sexual health activist that runs an
HIV blog and a YouTube channel named
Im still Josh. Welcome to the stage Josh
so how is everyone. I'm kind of
interactive or I'll get bored because I
know what I'm gonna talk about so how
are y'all doing good good good good good
so patient centricity is lip service
and patients know it uh so my name is
Josh Robbins I am a sexual health
activist primarily about HIV and I was
diagnosed on January 24th 2012 and on
this day February 9th 2012 I told the
world that I was living with HIV on
social media something that was
interesting is that I
I don't know how interesting or not it
was but I videoed being diagnosed and
then I posted it so it's recorded live
and I posted it on YouTube so at that
time I'm not some weird person it was
just like oh this is the worst thing my
life so I'm gonna like video it and then
try to like monetize it or something
what I wanted to do was share a moment
with the world that was probably the
worst day in my life but this is
something that patients experience all
the time I also have a blog it's called
I'm still Josh and the whole concept
behind it is I'm still me you still be
you even though I'm living with HIV I
will tell you you're gonna Albright a
little bit you get on my cup rack it
just won the National lesbian gay
journalist Association's excellence in
blogging award for this year
so being patient centric that's a buzz
phrase that you guys have been hearing and
then you know they've been important to
you guys for a couple years right right
yes yeah so good because I've been to
some of these conferences and people
talk about it all the time
patient centricity that new buzzword and
this is what it kind of looks like and
I'm going to need your help a little bit
but in the center of that model is
patient being patient centric is the
patient right and then all these other
circles kind of around the outside of it
are the different apartments that
pharmaceutical companies
like research and development and what
are some of the other departments
marketing and I mean y'all work yeah
okay legal there you go a regulatory
I'm with you there so this is what the
model looks like right as a linear model
this is what it looks like - so this
small circle there is the beginning of a
project or a product earth or something
great and the very end is the
communication of that product and making
it or initiative and making it go live
and being patient sensor is right in the
center what's the problem with that do
those parts because by definition
patient centric means the center so when
a linear model of these projects means
the patient's not involved at the
beginning and the patient isn't involved
at the end right so that's what it looks
like that's what it should look like
being patient infused so I'm introducing
a new concept to you guys today called
patient infused and what that means is
all your departments are around there
did you find your department that the
patient has to be involved in that and
it's really important that we are and
the reason that it's important besides
me being cute in that photo I just threw
that in there because I like that photo
has nothing to do with the talk today
but there are other health conditions
that that have advocates that are just
like me so I'm here talking to you just
as an HIV activist but there are people
like Cathy Elton with what would Cathy
eat soory reach so diabetes rambling
Natasha Bracy she's the bipolar purple
blog Adam sled substance use and then
this woman leased the basis with
multiple sclerosis
now instead of those sorta got her she's
kind of cool she has a blog called MS
Lisa says I mean just cute you get it
like Miss Lisa says and that's Lisa said
that's my mom it's a great blog right
yeah so I told my mom I convinced her 15
out of 15 years ago my mom was on her
death couch and I say death couch
because she was so tired that she
couldn't even get to the bed to die but
when I was diagnosed with HIV and she's
so persistent and I'm so proud of her I
said mom why don't you start a blog like
my blog and maybe you could get an award
now trying to teach my mom how to like
blog was not good now my mom is like a
rock star
and her blog content is like way better
than mine really undervalued but she is
somebody that really proud of and last
year in December of last year she
climbed to the top she trained all year
but she climbed to the top of a rock
climbing wall that's awesome right
I'm like mom is gonna love me for liking
talking to you guys today about the my
mom's story is real similar if I go back
my mom's story is real similar to mine
where we didn't we just started talking
about what we knew which was living with
the health condition just like the other
bloggers and other influencers that I
have showed earlier the opportunity that
you all in the room have are to engage
us to infuse your projects with our
perspectives we are supposed to be
patient centric right in your front and
your program or your products your
launches now patient infuse because of
today but my mom it's weird she I can't
say that it's because of blogging and
opening her life up on social media that
she got off the death couch but I can
tell you that it's highly coincidental
and I could tell you there's a real
power for patients that open up their
lives and share it with other people and
that is an opportunity that everyone in
this room has with people like me but in
every single health condition we are
literally alive because of you in this
room we'll get back to that but we are
dying to get involved with Pharma with
what you're doing because it's for us
right and we understand that we
appreciate it
the other thing is that most of us in
the the the influencer blogging space we
also have something called an HOA encode
which is health on that it's a
third-party accreditation that means our
health content is accurate it's the same
accreditation that WebMD health line and
some of the other
health information platforms go through
so I go through that accreditation every
year because I want my content to be
recognized as health and accurate and to
be patient infused you get it yet
awesome so patient infused that's
supposed to be your hands there because
I'm like everybody wants to be patient
infused now how do we get there how do
we as I'm just like putting myself in in
the room with you guys how do we as
Pharma marketers or pharma companies or
social media platforms or smarter tech
them how do we become patient infuse in
there's three ways on the concept
engagement level at the very beginning
when you're coming up with the idea with
the ideation of whatever whatever your
initiative is your program your product
whatever include us ask our opinion what
do we need what do we want what is
something that that is not currently
available to patients that we want
because we want to tell you
next is consulting decisions you know I
got invited to the White House once
because that has to go like no this true
story during the Obama administration I
asked I went to a listening session and
I said hey I want to come and I want to
sit at the major table that decisions
are made from the federal level about
HIV and they were like okay I was like
really yeah I was like doctor don't do
that too
and I miss my flight which is terrible
but I still made a house 30 minutes late
so I'm kind of like little boss that I
rolled up to the White House 30 minutes
later the point is is that consulting
decisions that I wanted to be involved
in the real decision-making
so whoever those people are at your
companies that make the decision of
whoever that final person is that's who
we want to be in the room with because
we want to help make those decisions so
that's the second way the third way is
communication expertise we have
communicators in the room
yeah some PR people yes no there I love
those people we want to be involved in
the communication of what you want to do
as well and we've all seen the mistakes
happen when somebody accidentally takes
off an entire community it happens a lot
in the HIV space and it's because we
have the opportunity to be involved in
that decision-making in the
communication of whatever that is
because we have expertise in it but no
one's asked us to be there yet right so
those are the three weeks patient
infused I want to take this opportunity
real quick to just pause and say you
guys are saving our lives
you guys are literally saving our lives
in any health condition and I just want
to say thank you Pharma gets a bad rap
sometimes and the reputation is not
always great specifically in the HIV
community but I'm somebody that just
wanted to say thank you right so fuck
yourselves
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