Managing a Cancer Community
If people come to your community because they have cancer, your approach is going to be different than if they were coming because a product broke or because they enjoy a particular hobby. That’s exactly the type of community that Cosette Paneque of Breast Cancer Network Australia is responsible for. On this episode, we discuss the unique circumstances around managing a community that connects around breast cancer, including:
- The first thing Cosette wants new members, who may have just received the worst news of their life, to see
- Creating processes around death in our communities
- How cancer survivors continue to contribute to the community
“The first thing I want [new members, who may have just been diagnosed with cancer] to see is that they’re not alone. … If they live in a rural place, they may be the only person with breast cancer. They may have never met someone with metastatic cancer. When they go on the [BCNA] online network, that’s the first thing I want them to know, is that they’re not alone, and they don’t have to go through this alone.” -@CosettePaneque
“What we do, [when a member passes away, is] close the account, but we change the role from member to dragonfly, which is a very special symbol for us at BCNA. We also put a little image of a dragonfly next to their photo. So, people will often go to their profile or start a thread and talk about how wonderful this person was and how they helped them and how they knew them. [Before doing this, we asked our members.] They thought it was just lovely and very respectful. They loved the image of the dragonfly, because they know that it’s got special significance to our organization.” -@CosettePaneque
“[Members who have faced breast cancer can] become community liaisons. … We help them learn how to share their story, how to speak to the media, how to speak at special events. We also use them in our campaigns and our commercials, because we only use real people in anything that we do. We always use our people. We never hire actors or anything like that. That would just not be appropriate at all when we have this amazing network of incredible, brave, courageous people who are more than happy to share their story. Some of them go on to become consumer representatives, which is a specialized training. They sit at the table with decision-makers and help shape the future of how breast cancer might be treated and supported in Australia.” -@CosettePaneque
About Cosette Paneque
After years of dying of dysentery on The Oregon Trail and playing Jeopardy! on a Commodore 64, Cosette Paneque took to the internet like a duck takes to water. Being a community member led to working in community. In 2010, she moved into the community management space with the US-based moderation company ModSquad and got to work with cool companies such as Warner Bros., Animal Jam, Kabam, Second Life, U.S. Army, Konami, The Playforge, ReachOut and Pathevo.
Cosette moved to Australia in 2012. In 2014, she joined Quiip, Australia’s leading social media and online community management and moderation company. While there, she worked with ReachOut, SANE, The Line, AMP Capital, VicHealth and NSW Health. Currently, Cosette is the online community manager for Breast Cancer Network Australia.
- Cosette on Twitter
- Wikipedia page for The Oregon Trail, a computer game that Cosette played as a child
- Jeopardy!, another video game that Cosette played, based on the TV show, on the Commodore 64
- ModSquad, a company that provides solutions around digital engagement, where Cosette was formerly a project and community manager
- Quiip, an Australian community management company, where Cosette was previously a consultant
- Breast Cancer Network Australia, where Cosette is online community manager
- The Oregon Trail card game
- The Oregon Trail “iOS game for children”
- Second Life, a virtual world that Cosette was a member of, which led her to a career in community
- Gina Miller, director of people operations at ModSquad, who hired her for her first community role
- Breast cancer statistics in Australia, from the Australian Institute of Health and Welfare
- Breast cancer statistics in the United States
- BCNA Online Network, the online community of Breast Cancer Network Australia
- ReachOut, an organization that provides “support for young people going through tough times,” which Cosette worked with in the U.S. and Australia
- Facebook’s memorialized accounts program, for users who have passed away
- BCNA Online Network’s FAQ, which includes details on why the dragonfly holds special significance in their community
- Stumble Down Under, Cosette’s personal blog
00:03: You’re listening to Community Signal, the podcast for online community professionals. Tweet as you listen using #communitysignal. Here’s your host, Patrick O’Keefe.
00:19 Patrick O’Keefe: Hello, and thank you for joining me for this episode of Community Signal. We’re talking with Cosette Paneque about how managing a community about a specific disease influences your approach and processes. After years of dying of dysentery on The Oregon Trail and playing Jeopardy! on a Commodore 64, Cosette took to the internet like a duck takes to water. Being a community member lead to working in community. In 2010, she moved into the community management space with the U.S.-based moderation company ModSquad and got to work with cool companies such as Warner Bros., Animal Jam, Kabam, Second Life, U.S. Army, Konami, The Playforge, ReachOut, and Pathevo. Cosette moved to Australia in 2012. In 2014, she joined Quiip, Australia’s leading social media and online community management and moderation company. While there, she worked with ReachOut, SANE, The Line, AMP Capital, VicHealth, and NSW Health. Currently, Cosette is the online community manager for Breast Cancer Network Australia. Cosette, welcome.
01:21 Cosette Paneque: Thank you.
01:22 Patrick O’Keefe: It’s so good to have you. Did you know that there is an Oregon Trail card game?
01:26 Cosette Paneque: No! Oh my God. Really?
01:29 Patrick O’Keefe: So, I only found out recently myself.
01:31 Cosette Paneque: I didn’t know that. I’m going to have to look for it now.
01:34 Patrick O’Keefe: I’m sure, you know, you can find it in Australia or get it shipped there, but it’s definitely on Amazon.com. I’ve played it as someone who is familiar with Oregon Trail, the computer game, kind of, but never played it. I played the card game with fresh eyes and I enjoyed it. I think, from what I know, you’ll find it to be pretty true to the experience on the computer.
01:51 Cosette Paneque: You know, I think that you can actually play all these old games now again, and I’ve never returned to Oregon Trail, because it was something that I played when I was, like, ten years old, and I’m a little bit afraid that if I played it now, I would be really disappointed and it would ruin my childhood in some small way. So, I’ll check out that card game and we’ll see how that goes.
02:14 Patrick O’Keefe: I think that, you know, the card game won’t disappoint you. But I find it funny or interesting that, when I Google “Oregon Trail”, the first thing that comes up now is “Oregon Trail™®”. It says, “Award-winning iOS game for children.” [Laughs]
02:29 Cosette Paneque: Yeah. Yeah, that’s what we did, like, once a week. That was our computer time when I was in, like, the fifth grade. Once a week, we were all allowed to play on this… There were only two or three Apple computers in the classroom, and that’s what we did. We played Oregon Trail. And I’m pretty sure that, at that time, I did not know what it meant to die of dysentery, but it was a very common occurrence.
02:51 Patrick O’Keefe: Yeah. It’s an educational game. If you’ve never died of dysentery before, you’ll learn. You’ll learn.
02:56 Cosette Paneque: [Laughs]
02:59 Patrick O’Keefe: How did you get your start in community work?
03:01 Cosette Paneque: I was sort of just playing. I was a member of communities. I was playing in virtual worlds at that time and I was gaming a little bit. And then one day, I was just browsing the web, and I came across the website for ModSquad, and they had these avatars, these images of avatars, and they were really cute looking, and they wore these ‘60s mod-style uniforms. And just kind of reading, I read that they actually were moderators inside of Second Life. That’s why I kept reading, because I recognized those images as being from Second Life. I had been in Second Life at that time. And I thought that was so cool, what they were doing. I didn’t even know that was a thing. And I remember on a Friday night, I sent this email to the HR person. It kind of went like this. It was basically: “I have never done this before, never had any training in this before, but it sounds really cool. I really like it, so please hire me.” And they did. That actually worked.
03:55 Cosette Paneque: So, the next week, they’d hired me, and they’d given me a job moderating. You know, they gave me some training and they put me on moderating Facebook games and chats and live chats, and then just slowly, I just kept moving up and learning more. The great thing about working in an agency like that is that you get to work with lots of different clients and lots of different online environments and different kinds of communities. So, I learned very quickly.
04:22 Patrick O’Keefe: Yeah. So, you wanted a job. You applied for the job. You more or less asked or said to hire you and you got hired. Do you remember who hired you?
04:31 Cosette Paneque: Yes, absolutely. Her name’s Gina Miller and she’s still at ModSquad. We still keep in touch. She’s wonderful.
04:36 Patrick O’Keefe: Very cool. So, as we talk today, we might use the acronym “BCNA” to refer to the Breast Cancer Network Australia. So, as you’re listening, as we talk about it, that’s what it is. According to the Australian Institute of Health and Welfare, 16,084 people were diagnosed with new cases of breast cancer in 2016, representing 12.3% of new cancer cases in the country. 3,073 people died of the disease. In the U.S., it’s estimated we’ll see more than 250,000 new cases this year and that more than 40,000 women will die. Many of the people who come to your community may very well have just received the worst news of their life. What is the first thing that you want them to see?
05:14 Cosette Paneque: The first thing I want them to see is that they’re not alone. It’s funny when we hear those numbers. In 2017, in Australia, that number has gone up. But in comparison to the numbers in the U.S., it sounds so small by comparison, 17,000 versus 300,000. So, in Australia, there’s a greater sense for some of these people of isolation. If they live in regional places, if they live in rural places, they may be the only person with breast cancer. They may have never met someone with metastatic cancer. So, when they go on the online network, that’s the first thing I want them to know, is that they’re not alone, and they don’t have to go through this alone.
05:55 Patrick O’Keefe: How does the age and the stressful circumstances of the average member impact how you approach onboarding?
06:04 Cosette Paneque: Yeah. So, that is something that we revisit often. On the one hand, it is a bit of a myth that older people—women in particular, because that’s who makes up the majority of my members—that older people are not online or that they’re not tech savvy or all these kinds of things. That’s a myth, and my mom, as an example, is 70 years old, and she’s on Facebook, on Twitter, on Instagram. She’s all over the place and she doesn’t even speak English. So, she’s a friend online.
06:36 Patrick O’Keefe: She probably has more Instagram followers than I do, to be honest.
06:41 Cosette Paneque: So, there are lots of people that come in. They take to it very quickly. They’re very comfortable right away. But there is always that number of people that aren’t, and that some of them, their first experience online may be with Facebook. So, online communities function a little bit differently, and we have to kind of show them those differences and why they’re like that. So, we just try to make things very, very simple for them, very clear, and there is a lot of contact. Like, there’s hardly a day that goes by that I don’t have a private message or an email or a phone call, or I’m explaining something or helping someone change their password, or something like that. And it isn’t because of a bug or an error. It’s just simply that they don’t know how to do it for themselves, or they run into some kind of problem. So, yeah, it just involves patience, and just a willingness to help.
07:28 Patrick O’Keefe: Kind of guided hand-holding, I guess, in a way.
07:31 Cosette Paneque: Yeah.
07:32 Patrick O’Keefe: It’s funny you mention the idea that Facebook was kind of their first…or a similar service was their first effort online. It’s funny because in community, a lot of the older practitioners will have—and I’ll even allow myself in there—their experience will have included, you know, structured online communities, hosted online communities – like, exactly what you do. Exactly what you do with the BCNA online network. So, they feel really comfortable in those spaces, but you’re talking about almost an entirely different group who, more or less, missed the idea of the social internet prior to, like, 2010 or ‘08 or ‘06. And so, their first experience is totally different, and so they think of… I mean, in some cases, they might think of Facebook as more or less the internet. Facebook and news, perhaps, and email.
08:17 Cosette Paneque: That’s absolutely right, and they bring expectations to our network regarding the kinds of things that they can do in Facebook. So, why can’t they do that on our network? Or if it doesn’t work that way, it’s kind of weird. So, for example, one of the behaviors that we deal with is the whole real names thing. Like, I remember when I was a member of online communities in the late ‘80s and early ‘90s and stuff like that. You never used your real name. That was unheard of. That was just bizarre. You just never did that. And there are so many people that join our community with their real first and last names as their usernames, or their emails as their usernames. That happens frequently. You know, there’s a constant reminder that we don’t require, we don’t have a real name policy. If you want to share this much about yourself, you can. But this is a public space and this is a delicate topic, so you may want to consider using a pseudonym instead. So, that’s the kind of thing that we have to constantly be kind of coaching on.
09:12 Patrick O’Keefe: You kind of have to force them to be safer and be private.
09:15 Cosette Paneque: Yeah.
09:16 Patrick O’Keefe: Some communities go as far as saying, like, “Don’t post personal information, personal or private information that links back to you, like your home address or your home phone number.” Like, I literally will not let people post that. Like, if they post it, it will be removed, because I don’t want to see it online for 20 years. Because the community I manage is, like, 16 years old, and if someone posted it 16 years ago, it’s still there. So, you have to kind of coach them on what’s safe online, I guess.
09:40 Cosette Paneque: Yeah. We have some sort of hard and soft boundaries. So, hard boundaries are, yeah, you’re not allowed to use your first and last name as your username unless there’s some very special circumstances for doing that. We definitely don’t allow an email as a username. That’s just crazy. We don’t let members post their phone numbers, their addresses. That sort of personally identifiable information, we don’t generally allow that. There are a few exceptions to that. Like, there are some people that have gone on to sort of create their own communities that have hived off of ours, and maybe they have established a brand, and that brand might be tied to their name, and so some people like that, we let them use their first and last names.
10:18 Cosette Paneque: And then there’s also the fact that we’re dealing with people in their fifties and sixties, and as long as they are conscious of their decisions and what that could mean, we respect their agency, in that sense. You know, if you really, really want to use…and you understand, you know, that this is what could happen and they’re still really insistent, then that’s fine. We let them do that.
10:40 Patrick O’Keefe: What is your view of those members that you mentioned starting an online community that kind of launches out of yours? I assume it’s an independent thing, possibly something they’re running. BCNA is a not-for-profit focused to breast cancer, so it’s not a for-profit thing. It’s not a commercial enterprise. Give me an example of, you know, not specific community, but how do you handle that sort of situation?
10:59 Cosette Paneque: In general, we see it as a partnership. Sometimes, those communities emerge because they’re very specific within the landscape of breast cancer. And, as an organization, BCNA has some very specific policy issues and advocacy issues that we work towards, and maybe there are groups that feel that they want to do more in certain spaces. So, we don’t really see that as an issue. And as you said, since we are not for profit, we don’t have a sense of competition with them. So, we find ways to support each other. So, for example, some of these groups may hold information events and invite us to be at those, and vice versa.
11:36 Patrick O’Keefe: And it sounds like they’re covering…I guess you mentioned kind of a niche or a specific part of breast cancer that might be… Not minutia. I don’t want to dismiss it for you. But you know, it’s a large organization focused at larger issues, and so there are more specific issues impacting this disease that are then focused on by the specific groups or people.
11:53 Cosette Paneque: Exactly.
11:53 Patrick O’Keefe: Very cool. So, we’ve talked about the age and the seriousness of the issue that your members are facing. For a community that is based around that sort of serious, life-threatening health issue, what do your long-term members look like?
12:07 Cosette Paneque: Well, we have two kinds, I think. One is the person that when they have been through treatment and that’s kind of over, and maybe they’re on some medications for the next five or even ten years, but they’ve kind of gone back to what they call “the new normal”. At that point, one of two things can happen. They either don’t want to have anything else to do with breast cancer – they don’t want to hear about it, they don’t want to see it, they don’t want to talk about it. They’re done. This is something that they kind of view as in their past. And then the other kind of person is that person that kind of picks up that banner. We have those kind of ongoing relationships with people like that, where they might stay in the online network and become then the people that now welcome new members and help them through their journey, or they might become peer-to-peer support group leaders in their own communities. Or we even take them on and train them to help them share their stories with, say, the public or the media. We call those people community liaisons.
13:05 Cosette Paneque: We also have people that even want to go beyond that and become consumer representatives, and they go through more extensive training, and those people will sit at the table when it comes to decision-making, you know, as people that can share their experience and talk about what is important to people affected by breast cancer.
13:23 Patrick O’Keefe: And this isn’t your first go-around with communities that deal with very serious, sensitive things. You’ve been at BCNA for about a year and three months, but prior to that, you spent substantial time working with organizations focused on mental health and reducing the suicide rate. And, you know, in these communities, death is a real possibility for every community, especially the longer you manage a community. Like, it happens. But in communities like these, it seems like it would be almost an acknowledged reality between participants. How do you think that reality that we’re talking about serious things that could impact our health that we could theoretically die from, how do you think that changes the dynamic, as opposed to, I don’t know, an average mainstream enthusiast community?
14:04 Cosette Paneque: It’s so different in the mental health space and in the breast cancer space. When I worked at ReachOut—that’s a good example, either ReachOut in the U.S. or ReachOut here in Australia, which is a mental health space community for young people—it was almost daily that we saw messages of suicide ideation or people kind of really close to that edge. And I never see that in our network. The main emotions, I guess, expressed in the BCNA online network are largely around anger and anxiety. But, you know, we do have a group of people there who are living with metastatic breast cancer, which is incurable, and the strength of that particular group of people is remarkable. And they’re so often… I mean, of course, they express anger and anxiety like everyone else, but they are so often and just so wise, and how they talk about how important it is to live in the present and try to manage that anxiety. It’s just a completely different kind of emotional landscape in the breast cancer space.
15:10 Patrick O’Keefe: Community is emotionally taxing work. It just is. [Laughs] I started when I was in my teens. There was just the abuse that would come into me. I mean, it’s just so much stuff. It’s emotionally taxing work that we do. And in your case, dealing with these communities about these topics, it’s emotionally taxing work. You know, you mentioned the difference between ReachOut and community focused at a disease that can be beaten—and, in many cases, is—but is it the same emotionally taxing work from time to time? Did that previous time prepare you for this? Or is it a totally different ball game when it comes to the things that you have to see as personal stressors in your work.
15:45 Cosette Paneque: I think working in mental health definitely prepares you. It’s different, though. So, in the mental health communities that I worked in… Which, because they were for young people, we stressed the importance of anonymity. And when issues were escalated, and in extreme cases where we had to get the authorities involved, we didn’t know those people beyond their username and their situation. I didn’t know what they looked like. I didn’t know their real names. I didn’t know where they lived. And so, when we handed over to the police, as an example, we have to learn that’s all you can do, and you have to be okay with that. And you don’t know what happens after that. At BCNA, relationships are so important, and we get to know our members. And in some cases, we get to know them very closely. We do see their faces. We see them at events. We see them at training sessions.
16:34 Cosette Paneque: So, you do get to know them. You do know their names, you know their faces, you know sometimes their spouses, their children. So, when someone who has, as an example, metastatic breast cancer, and they pass away, that’s very difficult, because it’s like losing a friend.
16:51 Patrick O’Keefe: Yeah. And I’ll move on from death after this, but there’s one more thing I was thinking about as I was kind of working through this issue and spending a fair amount of time on your community just reading. In community, we deal a lot with process. And this may sound morbid, but if something happens repeatedly or is possible or is particularly tough to deal with, it’s not unrealistic to have a process around it. Suicide, since you talked about it, is an easy example. I’ve had maybe two serious suicide-type posts on that community I referenced, KarateForums.com, that I’ve managed for 16 years. But we have a process for it. You know, you have to have an escalation process in place to understand what to do in those cases so that moderators know what to do. This certainly could include death in a community. You know, everything from how you handle the account of the member who you’ve lost and dealing with that respectfully, to what happens in the public community after a tragedy occurs. It could be part of such a process. You know, as far as the steps you take, is that something that you’ve thought about at all, or that you already have in place?
17:51 Cosette Paneque: Funny – when I began working at BCNA, we didn’t have that in place; at least, not explicitly. There may have been sort of a case-by-case process, and if it happened, okay, what do we do now? But there wasn’t anything on paper; at least, not that I found. And I think that part of the reason for that was because, in general, the BCNA network is very friendly, and so we don’t have a lot of issues that we have to escalate and people behaving badly and trolling and stuff like that. That’s not really a problem in our community. Exactly as you said, especially when someone gets very sick or passes over, those are very serious issues that we need to address. So, I did develop what we call sort of a crisis management plan or a risk assessment plan or something like that, where we sort of identified all the different kinds of situations or comments that people might make, and then we use a traffic light system.
18:39 Cosette Paneque: So, if things are green, they’re fine. No worries with those. We can either just thank them or prompt someone else to respond or something like that. And then we have the sort of amber-colored situations, which make us pause and consider whether something needs to be addressed or not. And that might be some sort of a harsh criticism or someone who might be very angry, or maybe expressing some anxiety that’s just enough that it kind of raises that internal alarm or red flag that you’re like, “This is kind of strange.” And then the red light stuff, which is suicide ideation, when a member passes away, when there’s a security breach. When do we respond to that? Who responds to that? What’s the process for that? So, yeah, we did end up putting that in place last year after I started working at BCNA.
19:26 Patrick O’Keefe: You know, that’s very good, and it’s something I encourage people to think about, because it’s easy to think about the good parts of community. It’s not always easy to think about the bad parts. But when you go… I mean, I’m sure this is something you picked up in your time at ModSquad and Quiip. But when you go and hire a moderation company like that, or a company that’s going to watch UGC for you, that’s what they’re relying on, in a lot of cases. That’s what they’re bringing in, is process. So, if you’re an individual community manager who’s starting out, one of the ways I think that people—to use a phrase being thrown around—”level up” is to really think about processes and develop processes around their repetitive actions, or even the actions that aren’t constant but are difficult, sensitive things, sensitive topics. And if you don’t think about it but it happens the first time, that’s when you can develop a process, because you just learned a whole heck of a lot about how to deal with that challenging circumstance that you dealt with. So, I really think those types of things are just so important.
20:18 Cosette Paneque: We had a situation last year where one of our really beloved members, not only of the online network, but just of the BCNA community in general, she was living with metastatic cancer, and it had become clear to us that she had entered the final stage of her life. And she was a very active member of the online community and lots of people knew her. And, you know, we did have these discussions around, you know, “She’s going to die, and how are we going to inform the community of that? What’s the best way to do that in a way that isn’t triggering to other people who are living with this disease? And how do we pay tribute to her? And what do we do with her account?” And that’s the kind of thing that I think can really easily fall through the cracks when you’re dealing with broader, bigger issues, because they don’t happen that often. And sometimes people think, “Oh, these things won’t ever happen.” You know, “Our community’s really nice. No one’s going to say that. No one’s going to do that.” Until it happens, and then you don’t have a plan in place.
21:10 Patrick O’Keefe: Yeah, exactly. And, you know, to be fair, a lot of platforms haven’t necessarily had to think about this, for a lot of reasons – speaking to death, specifically. Just because of scale, they’re not big enough where it happens constantly, or the internet is so spread out, or the internet hasn’t been around that long, right? But Facebook is one of the ones that probably has to deal with it the most, and they’ve come up with how they immortalize accounts and that process. And so, you know, for platforms that reach a certain level of scale and have a certain level of age, it pays to think about these things delicately, respectfully, to think about how people want to handle those sorts of things, both how the community handles it, but also how accounts are handled and how legacies are protected.
21:50 Patrick O’Keefe: Because, you know, for a lot of people—and I would include myself in this—a lot of what I will leave to the world will have been digital and in an online community, and so, there’s a certain responsibility that we have, I think, as community professionals, to treat that with the utmost respect. But also, as platforms do achieve scale at a certain level, like Facebook did, thinking about that process and giving people options and giving their family tools is, in general, a very good thing to do.
22:18 Cosette Paneque: Yeah, absolutely. And when I was thinking of the process for, you know, how do we deal with death in our community, I went to some of our more superusers and kind of ran the idea by them, as well, to get their feedback and see what they thought. And they all loved it and they thought it was a very respectful way to treat our members who have passed away. What we do is, once we hear about it, either through a family member, friend, sometimes it’s Facebook, the family might contact us to close the account, but we change the role from member to dragonfly, which is a very special symbol for us at BCNA. And we also put a little image of a dragonfly next to their photo. So, people will often then go to their profile or start a thread and kind of talk about how wonderful this person was and how they helped them and how they knew them, and it just remains there, but the account is effectively closed. They loved the idea. They thought it was just lovely and very respectful, and they loved the image of the dragonfly, because they know that it’s got special significance to our organization.
23:18 Patrick O’Keefe: That’s really nice. And we talk about death, but of course, the opposite is true. People talk about commitment curves in community, or ladders or mountains or, you know, graduating inclines or stairs.
23:30 Cosette Paneque: Yeah.
23:31 Patrick O’Keefe: But there’s this thought that, at the top of the curve, possibly for your community, is survival – you know, that you help someone to survive this disease and they no longer need the community. Or even maybe at the top of that curve, as you’ve kind of alluded to, the top of it is they become an alumni and they can be counted on to help people who are going through what they once got through. So, it’s funny to think of that in the terms of a commitment curve, but what does that process look like for when people—you know, you kind of hinted on it, but I’d like to hear more about it—how people graduate through the stages of the community when they no longer have to deal with this disease?
24:05 Cosette Paneque: The thing about breast cancer is that that process can take a very long time. Like, you might be on medication for up to five years—in some cases, even ten years—and that’s a long time to be taking breast cancer medication. But yeah, we definitely see people just being really helpful. We have a wonderful member in our online network that’s kind of taken on that role, where she does half my job for me. She welcomes people. She starts birthday threads for them. She will even… If they post in the wrong place, she will copy the post and start a new thread on their behalf. She’s really just super proactive and has taken that on herself.
24:45 Cosette Paneque: Other people go on to start face-to-face groups in their local communities, meetups, just meetups for coffee or things like that. They get into dragon boating, I think it’s called, which is really popular among breast cancer survivors. So, they take up a lot of activity. They take up fundraising for us. They go and do marathons and just all kinds of events like that. They become community liaisons. So, we offer them training, and they can come to us and we will help them learn how to share their story, how to just speak about their own experiences, how to speak to the media, how to speak at special events.
25:25 Cosette Paneque: And we also will use them in our campaigns and our commercials and things like that, because we only use real people in anything that we do. We always use our people. We never hire actors or anything like that. That would just not be appropriate at all when we have this amazing network of incredible, brave, courageous people who are more than happy to share their story. And some of them go on to become consumer representatives, which is a specialized training. They sit at the table with decision-makers and help kind of shape the future of how breast cancer might be treated and supported in Australia.
26:01 Patrick O’Keefe: You said something in your pre-show questionnaire that I found interesting: “When a community without a dedicated community manager fails, it’s easy to ascribe that failure to the lack of a community manager. But when a community manager builds or manages a successful community, we don’t always ascribe that success to them.” Elaborate on that.
26:24 Cosette Paneque: Well, I think that, just in my conversation with community managers, and I think this is true with social media managers, as well as a lot of people working in the digital space, is that sometimes, to people who don’t understand our work, anything on the internet seems easy. You know, how often do we hear people say, “Oh, yeah, my niece or my nephew’s on Facebook, so they can do this. It’s really easy. It’s just playing online.” Because it’s such a consumer product, everyone thinks it’s just easy and anyone can do it. And because so much of what community managers do is shaping things from behind the scenes. For example, I don’t post very much in the online network in my own community, because what could I possibly say to a person who’s been newly diagnosed with breast cancer? I don’t understand what they’re going through, so I don’t post there. So, I tend to tap other people on the shoulder and say, “Hey, I think you might have something to say to this person,” and then they go. So, they see the result, but they don’t understand what’s driving that.
27:23 Cosette Paneque: And it’s the same thing with a lot of the analytics involved in a community. People see the result. “Oh, it’s got this many page views, it’s got this many registrations, it’s got this many active users”, or whatever, but they don’t see that it actually takes effort to drive that, because it’s invisible work, in a way. People just think, “Oh, people… yeah, you just search for it on Google and you end up there and that’s it,” you know. Yeah, I just don’t think our work is that well understood, because these are such popular consumer products, it just looks like anybody can use them and anyone can use them well, and those are two different things. Anyone can use them, but using them well and using them professionally is a whole different can of worms.
28:01 Patrick O’Keefe: Being seen as a commodity is what it makes me think of. Something that can be easily bought and sold.
28:06 Cosette Paneque: Yeah, exactly. That’s right, yeah.
28:09 Patrick O’Keefe: And it’s funny. You mentioned “my niece does” or “my nephew does” or whatever. When I was a kid, you know, I used to design websites for people when I was a teenager. And I know the people that worked for my dad and did websites for him and for his line of work, if he brought me up for something, they probably felt that way. But just so we’re all clear, people, if my dad brings me up, you know, you better pay attention, because I know what I’m talking about! [Laughs] But all the other people, no, you don’t have to worry about them.
28:32 Cosette Paneque: Well, it’s funny, because I’m not in such a dissimilar boat. I mean, it was the same thing. I was playing on games and stuff when I was a kid, and then as soon as dial-up internet came out, I was all over that. And so, that just kind of naturally led me into a CM position, but it didn’t start at the top. You know, I didn’t start in a senior or even a junior role. I started, like, doing it in the worst… you know, the lowest thing you could be doing and you kind of work your way up. But I actually have some friends who have never worked in the community space or in the social media space who have taken jobs in that space for the very first time and given big clients to manage. And then, you know, they realize, “Oh my God. I don’t know what I’m doing. This is not what I thought it was going to be.” And they end up leaving those roles because it was not at all what they thought it was going to be. It wasn’t just like doing a status update or something like that. So, I think there definitely is a misunderstanding about the complexities of community, at times.
29:32 Patrick O’Keefe: Were those people generally fresh out of school, or were they people who had worked in other kinds of professions and were making a transition?
29:37 Cosette Paneque: They were…
29:38 Patrick O’Keefe: Neither? [Laughs]
29:38 Cosette Paneque: In some cases… Well, neither of them were just fresh out of school. They were all in one kind of role and maybe looking for something else, and someone offered them the opportunity and they thought, “Oh, why not?” Because it’s such a growing space. There’s so much demand for people, especially in the social media and marketing space. There’s so much demand. So, they thought, “Oh, you know how to use Facebook? You know how to use Instagram? Great. Come on, you know, manage these accounts. Manage these client accounts.” [Laughs] And then it’s like, “Well, that’s not at all how I thought that was going to go.” And then they also don’t realize that it’s a bit of a 24/7 job when you’re in community management. Like, I actually work part-time, but I can’t help it, you know. Of course, we all look at our communities after hours one more time before we go to bed, first thing in the morning, on the weekends. Like, we always check in.
30:25 Cosette Paneque: And, you know, I’m the community manager, so ultimately, it’s my responsibility, even when other people are looking after it when I’m off. You really have to love it. I don’t think it’s the kind of thing that you’re like, “Oh, it’s just a job. I’m just going to do it for some money so I can go do something else.” I think most community managers that I’ve met were community members, and they’re in this kind of work because they love it, not because it’s just a thing to do.
30:50 Patrick O’Keefe: I think that’s as good a place as any to thank you for coming on the program. It’s been a pleasure to speak with you. Thank you for sharing your experience with us.
30:57 Cosette Paneque: Thank you, Patrick. I’m so happy that I could speak with you today. It’s been fun.
31:01 Patrick O’Keefe: We have been talking with Cosette Paneque, online community manager for Breast Cancer Network Australia. Visit the Breast Cancer Network Australia online network at onlinenetwork.bcna.org.au. Cosette’s personal blog is stumbledownunder.com, and you can follow her on Twitter @CosettePaneque. For the transcript from this episode, plus highlights and links that we mentioned, please visit communitysignal.com. Community Signal is produced by Karn Broad, and we’ll see you soon.
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