Breast Cancer and Social Media | Johns Hopkins Breast Center


(Gentle Piano Music)>>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. (Gentle music)

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