Dec 18, 2018
Dr. Pennell and Dr. Schapira discuss the risks and benefits of online communities and provide recommendations for improving communication between clinicians and patients about the use of online resources.
Hello, and welcome back to the ASCO Journal of Oncology Practice
podcast. This is Dr. Nate Pennell, Medical Oncologist at the
Cleveland Clinic and Consultant Editor for the JOP. So it won't be
news to any of the listeners of this podcast that living with
cancer and dealing with the sequelae of cancer treatment is a
terribly stressful proposition and that cancer patients and their
caregivers benefit from support services and survivorship programs.
Most of us, however, think of providing these support services for
cancer patients in terms of in-person interventions, but
increasingly, people are looking online for these kinds of
support.
I suppose that's probably true for many other aspects of our lives
as well. Online communities have been forming in an effort to
improve access to support for cancer survivors. But how much do we
really know about these communities, and what evidence is there
that they are genuinely helpful?
Joining me today to talk about this fascinating topic is Dr. Lidia
Schapira, Associate Professor of Medicine at the Stanford
University Medical Center and Director of Cancer Survivorship at
the Stanford Comprehensive Cancer Institute. Dr. Schapira is also
the Editor in Chief of ASCO's patient information website,
cancer.net, and is a fellow of ASCO. Today we'll be discussing her
paper titled Online Communities as Sources of Peer Support for
People Living With Cancer-- A Commentary.
Lidia, thanks so much for joining me today.
Thank you so much for the invitation.
So first, this is obviously too big a topic for this podcast, but
explain a little bit about why cancer support services in
survivorship is important for cancer survivors. And I guess more
importantly, where is there an unmet need, that people might need
to seek that somewhere else, such as online?
Sure. So we think of support as something that is delivered in
person. And certainly in traditional medical settings, we offer
support, I hope, through empathic communication, through referrals
to social services, through programs. We are very much aware that
going through cancer alone is much harder and that support is both
important just strategically to get through it but also
emotionally.
I think that increasingly we also realize that people are seeking
support in other ways that are not traditional and have been less
well studied, and that's where the online services and supports
really are playing a very important, an increasingly important,
role for many patients and caregivers as well.
This is coming up actually a lot among patients of mine, especially
younger patients. So can you just tell us a little bit, when we
talk about an online community, what exactly is that?
So there are two words and each one is really important here.
Community means, really, a group, so it's not just a one time
exchange, but belonging to something, a sense of belonging to a
group. And the group shares a common interest. In this case it's
something related to cancer.
And online refers to where this group, or this community, meets. It
could be through instant messaging. It could be through other new
media or platforms. It could be through email. It could be through
a website. And that is going to change as technologies change.
What we're basically saying as a way of meeting people not in
person but meeting over time and through a shared expressed common
interest.
And there's lots of different examples of kinds of online
communities that you described in your paper. Can you tell us a
little bit about them? I know that there's some that are a little
bit more formal and structured and others that are really kind of
left up to the patients to moderate themselves.
Exactly. And to somebody who is not a digital native, like myself,
this has been a real interesting process of discovery. We tend to
think, perhaps incorrectly, that online means improvised, and it's
anything but improvised. A good online community that is mature,
that keeps the interest of its members over time, requires some
management, requires some decision, requires some effort on the
part of the people who are starting the community. And so we
learned that there are different types. There are different
media.
Some have actually some formal facilitation with social workers and
really function similarly to the way an in-person support group
functions. And some are much more informal, people sort of coming
together. So there are some online communities that are sort of
offered through large advocacy organizations like the American
Cancer Society or CancerCare. And there are others that are not,
and those typically occur in spaces like Twitter or Facebook.
And now there are even some privately sponsored online communities
such as Smart Patients. And we reference Smart Patients because
their headquarters are in Mountain View, California, and we got to
do a visit and really learn a lot about them just, again, to get a
better understanding of what's available for our patients.
Well it's nice that there's so many different options. How do
patients even find these? Do you know?
I think patients just find information in ways that come naturally
to them. There are lots of groups for young cancer patients and
survivors that have fun names, Stupid Cancer and so on, that are
terrific. And there are some that are more formal through other
societies. Facebook and Twitter are probably places that people go
to, and they're just basically looking for others with a shared
diagnosis. And so it's hard for me to answer that. It depends a
little bit on how familiar people are searching for things and then
what pops up when they are actually looking for something.
And one of the things that, as an experienced oncologist, I always
worry about is how safe they are. I think what first comes to mind
is, oh my goodness, people may be misinformed, or they may have
exaggerated ideas about one treatment or so on just by asking these
questions without really doing some formal research. But it's
amazing actually how much good information is also transmitted
through these very informal groups, some of which are absolutely
not monitored. But people just really push each other to learn and
to look for information in addition to giving each other
support.
When we started this, the driving question that I had-- and my
co-author was then a chief resident at Stanford and is now an
oncology fellow. The question we had was really, are people looking
for information about cancer and cancer treatment, or are people
really looking to connect with each other and help each other
through a difficult experience? And what we found actually is that
it's both, and it was very difficult to tease out where the good
information becomes also a source of support.
I would say that this sounds wonderful, and taking it at face value
is probably fine. But because we are academics, we always look for
data. And so is there actual data? Are there studies on the
benefits and risks of patients participating in these online
communities?
Unfortunately, I would say there is little rigorous data. We looked
for it, and we were hoping to be able to find sufficient numbers of
well-designed randomized controlled trials or other good trial
designs where we could actually study this. And one of the things
we are interested in is, of course, is it safe? And also, if it is
helpful, in what way is it helpful?
I mean, do people cope better? Do people feel that they're better
able to handle their illness, in other words? Could we find
measures of self-efficacy or coping or information or something
that was measurable? And we found many studies done but,
unfortunately, few that were of high quality and few that were high
quality and relevant to cancer. So what we found was actually not
sufficient to come up with either a sound recommendation or to go a
little deeper and do a systematic review or some more rigorous
review of evidence.
Yeah, it's interesting. You cite in your paper a few studies that
have shown some improvement, at least in things like self-efficacy
and decreasing anxiety or at least perceived improvements in these,
and then some that are worse and many that really don't seem to
show a significant difference. Is that something that you think can
change? Are there plans to do more rigorous research?
Our group has actually been very interested in trying to find the
proper design for a study. And we've brought together social
scientists, mental health scientists, and oncologists, and people
who really understand the technologies, and we're trying to figure
out how one could possibly study it. We think it needs to be done,
and I'd be delighted to collaborate with others who are looking
into this.
I mean, we know social media can help patients find each other or
find, perhaps, centers where they're doing research. Certainly,
patients with rare diseases find that it's a very useful way of
connecting with others. But what we were really interested also in
trying to identify how much-- what is the dose of social media?
What is the best venue? Is there a way of matching a patient to
group so that he or she may find what they're looking for, and when
is this benefit transmitted?
Our hunch is that it's probably early on in the cancer experience
that people derive the greatest benefit from feeling connected and
that what actually happens is that they feel some validation. They
feel better able to handle it. They actually learn how to ask
better questions. But it would be wonderful if we could actually
find a way of studying it. As you may well imagine, it's hard to
study something that people are already doing, so finding the
proper study design and population is what I think is keeping us
still from being able to answer these questions.
Sure. So when you see a patient who's, let's say, just gone through
surgery for breast cancer and is just embarking on her long
adjuvant therapy, how do you talk to them about these resources
online? How do you-- or really to all of us oncologists out there,
how do we guide our patients to wade into this brave new world in a
responsible and helpful way?
So for me the first step was to just recommend in my after visit
summary that patients visit cancer.net as a way of getting
informed. That to me was already sort of an important step. And the
next step, and I'm still thinking through this, is to try to have
this conversation with as many patients as I can, those were
receptive to this. And as I ask them, do you feel supported, do you
need a referral, I should also say, there are some online groups.
Some of the times I do. It's still not part of my routine, but I
bet you in a couple of years it will be.
No, that makes sense. I actually for a while was handing out to
people a little card which had some responsible, what I thought
were good websites, but mostly, again, for information as opposed
to actual communities where they could meet other patients. So
that's definitely worth some thought.
Well, Lidia, thank you so much for agreeing to speak with me today.
I'm sure our listeners got a lot out of this.
Thank you so much for the opportunity, Nate.
And I also want to thank our listeners out there who joined us
today for this podcast. The full text of the paper is available at
asacopubs.org/journal/jop, published online in September 2018. This
is Dr. Nate Pennell for the Journal of Oncology Practice signing
off.