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>> Hi, thank you for joining us today.
I'm Elissa Bantug.
I'm the director of Breast Cancer
Survivorship at Johns Hopkins.
Today we're joined by Don Dizon.
He's an Oncologist specializing in
women's cancer at Lifespan Cancer Institute.
He's the director of medical oncology
at Rhode Island Hospital.
He has an interest in Survivorship
with a specific interest in sexual health.
Doctor Dizon thank you for joining us today.
>> Thank you so much for having me.
>> So I'd like to start of talking a little bit about
the role of social media and how patients
why they wanna get involved.
>> Well it's an interesting evolutionary process
but we're in an era where the catch phrase
is patient engagement, and a lot of that I think
has occurred through the availability of the internet,
and as a result of that, through social media,
we do know that patients are more and more
turning to the internet as a first source of information,
and sometimes before they come to us,
our institutions or their doctors,
they're now finding these communities
where they can vet the information,
get other peoples perspective on it,
and really feel less alone.
So I think that's where social media has come in,
and it's just as breast cancer's not just
one disease anymore, what we're finding in social media
is the ability for patients to find each other.
So you have a community for women
with inflammatory breast cancer.
You have a community for women with
her two positive breast cancers,
and you have a very vocal community
of women with metastatic disease,
and I think social media has just allowed for
the formation of those communities
regardless of borders, really important.
Regardless of socioeconomic class,
and regardless of any other factor
that we're concerned about with health acuity.
The only thing that seems to be the issue is access.
So you have to have an internet,
and more and more often you have to
be in a community where you don't
necessarily have to pay for the internet.
So as a result we're seeing a lot of folks on social media
who may be more educated, more literate,
because we do see that a lot of these communities
are based in English settings rather than
say Asian, Chinese, Japanese communities.
But in the end it just allows for deeper connections,
deeper engagement, and then real ways to become an advocate.
>> Are there sites that you would recommend for patients
if they were interested in getting involved
but didn't know how to get started that you like.
>> You know, I think one of the easiest ways
to get involved is through Twitter quite frankly.
Twitter just requires you to create
a username and a password.
But then, if you wanna follow conversations in our space
you can do so quite easily through the use of a hashtag,
and the one for breast cancer is hashtag BCSM,
hashtag Breast Cancer Social Media,
and that's a nice place to start
because you do not have to participate on Twitter,
you don't have to participate in a conversations,
but you can follow a feed, and those feeds go back in time,
and you can see what kind of conversations
have been discussed, and then you can find people
whose voices you actually seem to agree with,
and you can actually develop a list
of folks where you can follow.
Beyond that, I think going with your hospital
or your institution, and the Survivorship
community that you have locally is also
a great way to connect on Facebook.
So there's some real nice ways to get involved.
Those are two of the ones I find
most useful at least to start.
>> So when you're using a platform like Facebook or twitter,
how do you decide what information you should share,
and what's too much information?
>> That's a very difficult question
just to have a broad answer to.
What I will say is it's a very individual decision.
I think part of it is based on
what kind of information are you looking for
and then or, the other side of the coin is,
what message are you trying to convey,
and I think if you looked at it with that lens
the answers would be fairly simple for the individual.
What's too much information to share?
That depends also depending, it depends on whether or not
your the clinician or the patient.
For the clinicians I think the lines are very clear.
You can share whatever you want,
as long as you're not divulging
anything confidential about a patient.
That's the line in the sand.
We don't want to break HIPAA.
For patients though, I think there's no clear answer there.
I've had patients share their entire
history of metastatic disease in a series of tweets,
and I've had other patients share very minimal information,
yeah, I had breast cancer at some time in the past.
The important thing to know is that
when you share something on social media,
as much as you wanna make it a private thing,
in the end, anything that's out there is discoverable.
The worst case scenario, we know what happened with Facebook
and the election that all of our private information
was probably accessed by a third party,
and they got a lot of stuff on us,
even though Facebook is a private account system.
On Twitter everything is out there,
you can't really take it back, and it can be mined,
although for everyone out there I think institutions
are looking at even studies using Twitter with a very
close look because if we still wanna make sure,
even if it's public, that we're not hurting anybody.
>> That sounds like the same advice I give my children.
Once it goes out to the world, you can never put it back in.
>> And I think that is incredibly good advice
that everybody should understand.
>> You mentioned the difference
between patient and providers.
One of the things that we sort of struggle with is
how do you draw the boundaries
between your clinical world and your patients,
and is it appropriate for your patients
to friend you or follow you?
>> Well I think to answer that question
I'll give you my approach.
I use certain forums for my clinical world,
and my professional space, and I use other forums privately.
In my professional space, patients can follow me,
patients might friend me on Facebook,
and that's fine because it's there for
the world to see who I am as a physician.
My private space is me, for my family and my friends only,
and I make it a habit not to friend colleagues
who are also friends in that space,
and I've made it so that if patients look for me
on Facebook or Twitter and Instagram,
they will find my professional profiles first.
So I think that's very important.
In terms of friending and following,
what I would say the caveat there is
for providers to think thoughtfully
about what their seeking to use that media for.
If patients are following you so that you can
utilize your platform to promote really interesting
developments that are afield,
current events that are relevant to your oncology practice,
and you wanna form so that people who know you
know what your thinking about then I think there's no harm
in having people friend you, no matter what the thing is,
but if you're using your persona to develop a reputation
as a public figure and you're sharing both
private and professional stuff on that page,
and you're having patients join that
so they can see who you are as a person,
I think the danger there is that they might discover
much more than you thought that they had reason to want,
and I do think even for us as clinicians we deserve
a private space, and so I'm clinging
to that for as much as I can.
>> Sounds like good way to dicadamise it though, I like that.
>> Yeah, I think so, and I think it works,
you don't have to be a doctor for this.
I mean, you can be a patient advocate,
and do all this work on behalf
of the breast cancer community.
It doesn't mean the community has
access to your private life.
>> I like that, the idea keeping some
things public in the public sphere,
and then keeping pictures of the
grandkids and other things private.
>> Dizon: That's exactly it, yeah, they don't need,
you know, not that they need, the fact my mom
celebrates her birthday and X, Y, and Z,
is something I wanna share with my sisters.
I don't think this helps you understand who I am
as a doctor by sharing that kind of information.
>> And probably doesn't improve your care.
>> Dizon: You're right, exactly.
>> Makes a lot of sense.
For people that are involved in social media
and things go wrong, are there sort of parameters
or places to go if you find yourself in trouble?
>> Well I think the first thing,
the best advice I could probably give is to
seek out help within the sphere you find yourself in.
For example, if I tweeted something
that I later very much regreted tweeting,
I would be the one to come to my complaints group
and bring it, and say I don't, you know,
whatever my concern is, just you should
be the one to bring it forward.
So that's ownership of everything that you've done
is part of what being in social media has taught me
is it's very hard to pass the buck about that.
But you know what, just like what we learned
in grade school, because you mentioned your kids,
there is very much significant power
in admitting something was a mistake, and saying I'm sorry.
>> Good life lesson.
>> And it can really cut down a lot of barriers.
I think the hardest part from the providers side
is when that error or that mistake
was a breach of confidentiality.
Unfortunately people, physicians, clinicians
on social media have been actively
sanctioned for those kinds of mistakes
and it's very hard to back track from that.
>> Do you ever find that there's a slippery slope
with regards to being too plugged in,
into this sort of world that we live in,
where we're all walking around with our phones
and you don't have a minute of being able
to sort of go to the bathroom without checking your phone?
Does that happen, and are there sort of
ways you can police yourself to prevent
yourself from being too connected?
>> Well you know, I think not only does it happen,
but it's the biggest fear of my colleagues in oncology
which is they're checking their email all the time.
They can't imagine they're also gonna be on Twitter
and checking their Twitter feeds all the time
and so there's this very big concern
of being over connected, I like that term a lot,
I'm gonna start using it.
So I think part of what we need to do is we,
who are on social media, really need to ask
what's the value of this, and so I'm actually trying to,
a group of us has banded together to try
and bring an evidence basis to social media.
We're calling ourselves Collaboration for Outcomes
using Social Media Oncology, COSMO.
So we're looking to actually find out,
what are the key questions, and how can we go about
answering these key questions so that we can make
a value argument to our peers in medicine
about why you should take the time to be on social media.
For me it's obvious, it's about engagement
at a very high level, and it's about learning perspectives
that I may not ever have any way
of understanding before social media.
By listening to the conversations that patients
and patient advocates are having about the same data set,
you get a very different perspective
from that point of view and I've learned a lot from it.
In terms of being too connected,
yeah it happens, it happens all the time.
Some of the rules that I've adopted
have come from my kids and my family
who've demanded of me, and some of it is really realizing
that if I'm always on the phone, I'm missing out on my life.
Usually when I go on family vacations
I don't connect on social media.
I put it all away, I put email away,
I actually do an out of office.
>> And stay out of office!
>> And I can stay out of office.
I actually don't answer my emails when I'm away.
There's a certain point at night
when the kids turn off the TV, I turn off my phone.
So there are things that you have to
actively do to stay grounded I think.
>> But it sounds like if you can place
yourself there are a lot of benefits.
>> Absolutely, I think there's more
benefits than risks on social media.
If you just treat it with the respect that it requires,
and you decide which realm you're going to operate in.
So when I first started on Twitter for example,
I had a personal Twitter account
and a professional Twitter account,
and I found myself tweeting my personal stuff
on my professional account and I
quickly would delete these tweets,
but I knew that someone might have seen them.
>> Well this has been really helpful, thank you so much.
Thank you for joining us today.
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