Online Communities as Sources of Peer Support for People Living With Cancer

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.