Bettering Health Outcomes Through Peer Support at Mayo Clinic
Do you have a 60-second pitch for your community? In this episode of Community Signal, Colleen Young, community director for Mayo Clinic, raises the challenge of being able to deliver a concise and impactful pitch to other leaders at the nonprofit. “I’m just imagining finding myself in the elevator with this leader by happenstance and being able to finally say something just in two floors that we have. It’s really hard to be able to know what is going to motivate them to be excited about the community. I’m really struggling with that,” explains Young. Many, if not all of us, have been in a situation like this, whether we were helping to onboard a new leader or in an impromptu meeting.
This conversation is a bit longer than 60 seconds, but in it, Colleen delivers a very compelling case for Mayo Clinic Connect. The community’s moderation practices and active participation makes it less of a haven for misinformation. And when misinformation does appear, expert testimonials and active participants within the community help inform and correct. The community also comes together to help people understand their options for care and to manage their symptoms. “Peer support can better health outcomes,” says Young. The community also has a direct impact on Mayo Clinic’s livelihood – as it can be a direct driver of appointment bookings and visits.
So, the next time you’re thinking about how to pitch your community to another colleague, think about the value that it brings to your members and how that value leads to positive outcomes for the business. And as Patrick says, don’t be afraid to ask for more time to advocate for the community and your work!
Colleen and Patrick also discuss:
- Why Mayo Clinic Connect measures appointments as a metric
- Has medical misinformation actually gotten worse over the last 15 years?
- Developing your 60-second community pitch
Our Podcast is Made Possible By…
If you enjoy our show, please know that it’s only possible with the generous support of our sponsor: Hivebrite, the community engagement platform.
How Mayo Clinic Connect approaches misinformation (3:07): “There’s a lot of misinformation that’s not with malintent. That’s the part [where] I think online communities can do a lot of good, in that sometimes it’s just misunderstandings, and the self-correcting nature of online communities in health is really quite amazing if you have a healthy, active community.” –@colleen_young
Patient connection can improve health outcomes (14:14): “On the patient portal, patients are reporting how they’re managing the side effects of cancer treatment. If they’re severe, they get triaged to a nurse. If they’re moderate-to-mild, they get triaged, as a prescription, to the community because they know through community support that they can help manage those side effects. That is the clinicians really giving a hat tip to the community, knowing that peer support can better health outcomes.” –@colleen_young
On launching a community strictly for research (16:28): “[There have been] researchers really interested in peer support online, so they would create a community in order to study the community. … It was terribly frightening, I have to tell you. They were creating these communities, bringing people together somehow … [and] when the grant was over, pulling the plug. They had managed to connect some people and essentially left them high and dry.” –@colleen_young
About Colleen Young
Colleen Young is an online community strategist, recognized for her expertise in building online health communities. Clients include Mayo Clinic, College of Family Physicians Canada, Canadian Virtual Hospice, Heart and Stroke Foundation of Canada, Dartmouth-Hitchcock Health, Hjernerystelsesforeningen Denmark, EURODIS, and more. As community director for Mayo Clinic Connect, a virtual community connecting patients with each other and to Mayo Clinic medical expertise, Colleen believes online connectivity is arguably the most exciting innovation of the patient-led health era. As a tenacious connector of patients, Colleen demonstrates how an active community, strategically managed, can re-imagine health care and improve health outcomes.
- Sponsor: Hivebrite, the community engagement platform
- Colleen Young on LinkedIn
- Mayo Clinic
- Mayo Clinic News Network
- Mayo Clinic Connect
- Medicine 2.0
- Priscilla McClay on Community Signal
- Sue Ryder Online Bereavement Support
[00:00:04] Announcer: You’re listening to Community Signal, the podcast for online community professionals. Sponsored by Hivebrite, the community engagement platform. Tweet with @communitysignal as you listen. Here’s your host, Patrick O’Keefe.
[00:00:25] Patrick O’Keefe: Hello, and you know it’s that time again, it’s time for Community Signal. Thanks for listening.
Our guest is Colleen Young, community director for the Mayo Clinic’s patient-led online community, Mayo Clinic Connect. We’re talking about why they measure appointments as a metric, the challenge of coming up with a 60-second pitch for a healthcare community, and if medical misinformation has really changed all that much over the last 15-plus years.
A huge thanks to our Patreon supporters, including Maggie McGary, Carol Benovic-Bradley, and Heather Champ. If you’d like to join their ranks, please visit communitysignal.com/innercircle.
Colleen Young is the community director for Mayo Clinic Connect, a virtual community connecting patients with each other and to Mayo Clinic medical expertise. Her clients have included the College of Family Physicians of Canada, Canadian Virtual Hospice, Heart and Stroke Foundation of Canada, Dartmouth-Hitchcock Health, the Danish Concussion Association, EURODIS, and more. Colleen believes online connectivity is arguably the most exciting innovation of the patient-led health era. As a tenacious connector of patients, Colleen demonstrates how an active community strategically managed can reimagine healthcare and improve health outcomes. Colleen, welcome to the show.
[00:01:34] Colleen Young: Thanks for having me.
[00:01:36] Patrick O’Keefe: It’s my pleasure to have you. You’ve been working medical communities for a long time. Almost seven years at Mayo Clinic, and overall more than 15 years working in health and medicine communities. How would you with your experience rate the spread of medical misinformation now as opposed to 2006? Because outside, it seems worse, lots of media coverage. We hear a lot about it, but you’re someone who’s knee-deep in medical information, building communities where people get together, they share information; they trade information. Is it actually what you see in practice? Is it worse or are we just imagining it?
[00:02:11] Colleen Young: It’s significantly worse. You’re not imagining it. I’m really sad to say that, but it is much more toxic and dangerous in open social media platforms such as Twitter, Facebook, Instagram, et cetera. I think this is one of the reasons that our proprietary online communities are being heralded more now than ever, is because we can cultivate that etiquette, and also the moderation practices that we know that work, that we can keep our lawn healthy. When you see the bad weed, it’s easy to pull it out. Just with that scale.
I think that with proper community management, with good moderation, that we can assist in keeping that misinformation away from the communities, out of the communities. I also want to say that there’s a lot of misinformation that’s not with malintent. That’s the part that I think online communities can do a lot of good in that sometimes it’s just misunderstandings, and the self-correcting nature of online communities in health is really quite amazing if you have a healthy, active community. Active is really the operative word because you want enough eyes on that misinformation to self-correct it. It’s really important.
[00:03:37] Patrick O’Keefe: When you talk about the proliferation of massive social media platforms that didn’t really exist in 2006, I started moderating content in ’98. People use the word decentralized now to mean a lot of things. Jack Dorsey wanted to do decentralized moderation. It’s a word that gets thrown around, but back when I started, it felt much more decentralized than it is now. It feels that that power to influence people is concentrated into a few really big platforms, Facebook, Instagram, Twitter, some others internationally as well.
Does it feel like when it comes to moderation and just ensuring a safe community that that concentration of power has made our lives harder when it comes to this? Those things spread faster now because there’s these concentrations of people in dedicated spaces like Facebook groups that Facebook might not be watching particularly well, where now you have these things spread so fast and it spills over into your community and creates more work for you to do, where in the past that wasn’t as easy, you had to look a little harder. It didn’t intersect into your day because you happen to go to Facebook to see your grant kids’ photos.
Is there anything there I’m saying that makes any sense? Does that match at all with your experience?
[00:04:45] Colleen Young: It completely aligns with my experience. COVID, of course, has really shown that under the microscope, mixed my metaphor, but anyway, put that under the microscope and exposed that. One of the things that I’ve been expressly happy with Mayo Clinic is that we are creating content from the sound waves that we’re getting from these large social media platforms. When there’s misinformation out there about a treatment that is unfounded, for example, we’ll have an expert speak to that in a podcast or a video song. It goes out on traditional media, but I can also bring it into the community at the time that there’s questions about it.
There seems to be somewhat of a delay from the Facebook hype of misinformation until it gets into the community, albeit only hours or perhaps days, if I’m lucky, but generally, in that timeframe, Mayo Clinic has spoken to an expert about it and I can bring in the expert opinion and keep conversation going. It’s also something that I have to be really careful about, is not to stop the conversation. I don’t want to just come in and say, “Boom, here’s the expert opinion, shut up.” You want to keep the conversation going so that they understand about evaluating good versus bad information. How can I equip my members to evaluate for themselves?
[00:06:09] Patrick O’Keefe: I’d like to take a moment to introduce a brand new sponsor to Community Signal, Hivebrite.
Hivebrite empowers organizations to manage, grow, and engage their communities through technology. Its community management platform has features designed to strengthen engagement and help achieve your community goals. Hivebrite supports over 500 communities around the world, including the American Heart Association, JA Worldwide, Earthwatch, the University of Notre Dame, Columbia Business School, and Princeton University Advancement. Visit hivebrite.com to learn more.
When I asked you about community metrics before the show, you told me that you measure appointment requests. Talk about that. Why do you measure that?
[00:06:51] Colleen Young: That is just one of the measures and not the main goal of Mayo Clinic Connect. Our overarching goal is really to connect people to improve their health and wellbeing, but one of the quantifiable metrics for the organization is that it is an open community for Mayo Clinic patients, for prospective patients, and for people who may never even cross the threshold of a Mayo Clinic institution.
One of the things that we do want to do is to make sure that people who are interested in coming to Mayo Clinic can find a way to Mayo Clinic. We want to know how people just hearing by word of mouth from others who have been there may wish to request an appointment at Mayo Clinic. We are tracking how many people are clicking that button and then subsequently making an appointment and coming to an appointment.
[00:07:42] Patrick O’Keefe: Part of the motivation I think in telehealth for some folks is in managing the costs around healthcare and helping people where they are rather than making what might be deemed an unnecessary appointment. Do you feel like that’s a funny line you have to balance because, on one hand, you’re helping people where they are, right between appointments in a lot of cases, but also then you do want to encourage people to come in and have appointments? There’s a back and forth there. You’re encouraging both things at once. Is that fair to say?
[00:08:11] Colleen Young: I think in a limited way. I don’t think that they are necessarily opposites. We certainly don’t need to see everyone at Mayo Clinic. Mayo Clinic is really for complex care and so we want to help people to advocate for care locally where they’re getting care and to be the advocate for the best care that they can get. It’s not necessarily a failure if they don’t make an appointment request because we don’t want them to travel all the way to a Mayo Clinic when they can get equally good care locally. Does that make sense?
[00:08:46] Patrick O’Keefe: Yes. Is it a very common story where people who come to the Mayo Clinic community, and I mean very common in the sense, not that it happens with everyone, but just that there are numerous members who really learn about Mayo Clinic through first discovering the community, talking to people, receiving information about whatever they’re going through and then they decide to actually come to a facility because the community was there for them?
[00:09:10] Colleen Young: Yes. The community is definitely part of the deciding factor. mayoclinic.org as you know comes up at the top of many internet searches when you’re looking into a condition. We have links to the community throughout the website. They’ll often visit .org, so the main website, they’ll visit Mayo Clinic News Network, some of our consumer-facing information that is really day-to-day, and Mayo Clinic Connect.
We’re about the fifth public-facing top website produced by Mayo Clinic that helps encourage that. They may read about a condition, they may watch a video of a physician, and then they want to hear from people who have been there. Oftentimes that is the deciding point or a contributing factor.
[00:09:58] Patrick O’Keefe: Mayo Clinic is renowned for expertise in medicine. How do you think the community impacts that? Do you think the community lends even additional credibility to what is obviously a very credible brand?
[00:10:10] Colleen Young: Yes, very much so. People will say that, “Do your research. Not all facilities are created equal. Find out how many surgeries they’ve done for hypertrophic cardiomyopathy, for example, and you want to go to a center of excellence.”
Not all people on Mayo Clinic Connect are only recommending Mayo Clinic. It is an open community for anyone being treated anywhere. If they’ve had really good treatment at, say, Massachusetts General Hospital, we don’t prohibit them from saying that. We really want to have people advocate for good care where and how they need it.
[00:10:52] Patrick O’Keefe: Sticking with ROI for a little bit, you also told me that community is an essential recruitment tool for special co-creation projects with patients. Could you talk a little bit about how that works?
[00:11:03] Colleen Young: Well, this is what we were talking a little bit about before when we went on air, is building this community has been a long process. We’re actually celebrating our 10th year. The first thing that people do is come to a community because they have an acute need, a really burning question. It’s really important that they get a response relatively quickly and that they’re integrated into the social fabric of the community.
What makes people return as you well know, is not necessarily what brought them there in the first place. In health communities, that’s the power to be able to give back. If I come into the community and perhaps I’m just really worried because I’m about to start chemotherapy and I’m just wondering, “Is my hair going to fall out? How am I going to tell my children now that they’ll visibly be able to see that mom is sick?”
My first seeking of a community is because I’m not going to ask my doctor about losing my hair. He’s saving my life, he probably doesn’t care about my losing my hair and so I’m going to a community. I as a community manager know that this person also comes to the community with a lot of knowledge. I want to recognize that she has most certainly gone through the process of hearing those words, “You’ve got cancer,” and she most likely has already had surgery before chemotherapy.
I know if I can get her a quick response, she’s more likely to help the next person who posts maybe just an hour later saying, “I’ve just been diagnosed with breast cancer, now what?” There you’re satisfying that need of answering her question, giving her that serotonin rush of acknowledging that she has knowledge to help her neighbor. Then they become integrated into the social fabric and can help a group.
Getting finally to your question, is what can we do then to help these people to do even more and empower them to help change the healthcare system? Through Mayo Clinic Connect, we’ll often post things that we’re looking for certain members to help contribute to various projects, where we want the voice of the patient included in that project. We’ve done so many different things that I’d be happy to tell you about that is they are really better because patients were involved in those projects.
[00:13:31] Patrick O’Keefe: Yes, I would take one or two examples. Yes, definitely. Talk about it.
[00:13:35] Colleen Young: Super simple example that almost any community can do is that we start a thread gathering tips, what are your tips on better sleep health, and then making an article about it, a patient education piece. We’ve made many patient education pieces with tips from the community, created those into articles or into videos. A much larger project, much larger scale, we actually recruited advisors for, again, a cancer project, whereby they actually proofed and helped develop every aspect of the project.
It is something on the patient portal, where patients are reporting how they’re managing the side effects of cancer treatment. If they’re severe, they get triaged to a nurse. If they’re moderate to mild, they get triaged as a prescription to the community because they know through community support that they can help manage those side effects. That is the clinicians really giving a hat tip to the community, knowing that peer support can better health outcomes.
We also use those advisors to help develop the website. That is part of the e-learning course that goes along with it. They created videos to help patients understand how to use the program. They really did all of the work guiding the healthcare professional into how to make this adopted by patients.
[00:15:04] Patrick O’Keefe: One of the bullet items that you mentioned in the co-creation projects was contributing to literature and advancing medical science. That to me implies research projects and the like. Does that mean that when someone at Mayo Clinic is thinking about a project like that and they’re thinking about the subjects or people they should talk to that they think of the community as one of the core places to go and part of the toolset of resources they have available to them?
[00:15:29] Colleen Young: We’ve had quite a wide variety of research that we’ve done with patients, talking about the benefit of peer support online to managing their condition, from chronic kidney disease to hiccups from chemotherapy. It’s really quite widely varied. What I was mentioning to you about advancing the literature was actually specifically talking about advancing the literature of the benefit of online communities in health. Just how different management styles can lead to better healthcare or better management of online communities.
One of the first papers that I wrote in 2013 was really written out of frustration that I was seeing by going to research conferences. There was a conference that was going on around 2009 that I started to go to called Medicine 2.0. There was a lot of researchers really interested in this peer support online, so they would create a community in order to study the community. They didn’t understand what it took to build a community, so they were making conclusions that, “Okay, online and community support doesn’t work.” I was having the hypothesis of, “No, your community management skills are not working, our online community does work.” That’s what I’m hoping to try and advance.
[00:16:55] Patrick O’Keefe: I think that’s an interesting ethical conundrum too, especially with health, to create a community for the sake of studying it. [chuckles] Right? Rather than study something that is already naturally coming together and not a research project.
[00:17:08] Colleen Young: It was terribly frightening, I have to tell you. They were creating these communities, bringing people together somehow, I don’t really know exactly how because they certainly weren’t using the tools that you and I know and the strategies that you and I know that work in online communities, and getting some of those people there. Then when the grant was over, pulling the plug, so they had managed to connect some people and essentially left them high and dry, and they built their own platforms. This is before we had tools like some of the community platforms that are easily accessible and low cost now, so quite frightening.
[00:17:43] Patrick O’Keefe: Are we getting Medicine 3.0 yet? I’m just kidding.
[00:17:46] Colleen Young: [laughs]
[00:17:46] Patrick O’Keefe: I love how everything is versioned, Web3.
[00:17:50] Colleen Young: Well, Medicine 2.0, that morphed into actually Medicine X because we just stopped naming it.
[00:17:55] Patrick O’Keefe: Oh gosh, the numbers stopped.
[00:17:58] Colleen Young: [laughs] That’s right.
[00:17:58] Patrick O’Keefe: Wow. That’s funny.
When I asked you about challenges that you were dealing with, you said, “The single biggest challenge I’m facing right now is to be able to express the value of the patient community in 60 seconds or less to new leaders. Give me 10 or 15 minutes, I can demonstrate value, pique their imagination, and infect them with my passion. Often, top leaders, many degrees removed from the community, want a more concise one-floor elevator pitch with a quantifiable metric.”
Talk about that because I think it is something that a lot of folks can relate to, not getting the time you need to maybe adequately express the full breadth of the value of what you’re creating, so you start to cherry-pick what you think is going to make this person see the value of what you’re doing. Yes, generic, but talk about that.
[00:18:49] Colleen Young: I wish I had an answer. I was hoping that you would give me more answers about that one. In fact, I was going to turn the tables in the interview.
[00:18:56] Patrick O’Keefe: You can still do that, but-
[00:18:57] Colleen Young: Okay.
[00:18:57] Patrick O’Keefe: -we’ll start with you.
[00:18:59] Colleen Young: I would love to hear some of your solutions to that. One of the things that I love to do while presenting is to understand what really makes that person who’s listening to me tick, and that takes time. I’m just imagining finding myself in the elevator with this leader by happenstance and being able to finally say something just in two floors that we have. It’s really hard to be able to know what is going to motivate them to be excited about the community. I’m really struggling with that.
Like I said, if I have 10 minutes, it’s fairly easy. The biggest thing for me for Mayo Clinic is that I can say this is where we get to hear firsthand the voice of the patient uninterrupted, unedited, and that we can basically give them what they’re looking for at the time that they’re looking for it as well. Back to your question about appointment requests, that is one that definitely equates to dollars. I know that that’s a big driver of conviction for leaders, even though it’s not the primary goal of the community. Those ones take a longer time to describe.
If the leader is into research, that one’s an easy one for me. If they’re into development of co-creation projects and patient education, that’s an easy one for me, but the one that gets all of them is that there is the appointment requests. There’s definitely a money aspect to it, but once I’ve sparked their interest through the appointment requests, then I can tell them what more we can do. That’s almost the door opener so that I can go deeper into the actual purpose of the community.
One of the things with the appointment requests is that we have to allow conversation and for people to actually through the course of conversations say, “Hmm, I am thinking of coming to Mayo Clinic, or would it be a good idea to get a second opinion?” Then, rather than just having that glaring button of appointment request, we can say in the course of the conversation, other Mayo Clinic patients can come in and say, “Well, if you’re thinking of Mayo Clinic, here’s the link.” They can show them and help them of what to expect when making an appointment request. How much better to hear it from another patient than from a moderator?
[00:21:22] Patrick O’Keefe: Yes. To me, it sounds like you’re doing what you can. I think the tough thing is, and just to be clear for people listening, Mayo Clinic is a nonprofit, but that doesn’t mean that they don’t need money. [laughs] There is that motive. It’s not the for-profit motive that you might be thinking of it’s things cost money, and the community costs money to host, to run, to pay people like you, obviously. Someone would say, “Unfortunately, it does boil down to money in a lot of ways for most of us,” because we always have to do justify ourselves. I think that what you described, trying to find the one thing for each person, and you should nail it with your 60 seconds, is the best way.
Unfortunately, we find ourselves in this position where we try to twist the community into what they need instead of the community being what the community needs. It’s not that we are doing that, it’s that we’re in this tough situation where it feels like we’re forced to do that because if we don’t get this person on our side then the community may not exist in the future. Maybe not your case, but in other cases, it may not exist in the future if we don’t get this person on board.
It’s a tough thing to distill it because you also don’t necessarily want to be held accountable to the goal that this represents. Yes, you can do that thing sometimes, sometimes that thing you want comes from the community, but if you want us to generate five of those per quarter or five of those per month or five of those per week and it’s now the metric that we’re accountable to, not only can that set the community off on a different course but it can also lead to you not satisfying your direct boss or someone who’s more in your direct chain that you need that person too. It’s a lot of chefs and there’s only one pot of broth, so it’s a challenge.
[00:22:56] Colleen Young: It’s so true. My biggest fear is even though that is the single biggest conviction point because it has a quantifiable dollar sense to it, it would be the destruction of the community if it were distilled down to appointment requests. We have much better tools if that is our single goal.
[00:23:16] Patrick O’Keefe: Yes. There is, as you know, I’m just saying for the sake of saying it out loud, is there’s monetary value to a lot of the things you’ve discussed here because, for example, some people might hear you talking about co-creating content and think, “Wow, Mayo Clinic, that’s a big organization. This is free labor over here.” You might have heard this in conferences and talks before, like, “The difference between tapping into a community resource where people want to give back and help others for a nonprofit versus a for-profit company building things off the backs of volunteers and doing so in a way that’s parasitic or abusive.”
Those are two different things, depending on how you implement them. One can switch easily with a few choices and so people might hear that and say, “Oh, this, that,” but for Mayo Clinic, it makes sense. It’s a nonprofit, but that has financial value because if the community wasn’t helping to co-create those resources, that would mean that you would either not have the resources or they would not be as good or you would pay someone to write them. Those resources are, to distill it down to a cold term, lead gen.
The search engine results you talk about, how highly Mayo Clinic ranks, content that the community creates, the availability of the community, all those things enter into that. They have value in a way that would have to otherwise be paid for financially, whether it was buying Google ads because the search results weren’t as well or whatever. All of those things have financial value, but if you’re talking to someone who, I don’t know, only cares about appointments, then they’re not necessarily going to care so much about co-creating. Although co-creating can lead to appointments if you link all that stuff up, and you can make some guesses. Yes. When we have so many different people to get on board, and not that you do, but many of us do, it’s that challenge of like, “Yes, these are things we do, but these are side things.” [laughs]
[00:24:59] Colleen Young: Yes, or contributing things. They’re not really off the side of the desk per se, but it’s all leading to the voice of the patient is very important to Mayo Clinic. I do know that that resonates widely.
[00:25:13] Patrick O’Keefe: More importantly, the community thing, if you don’t do that main thing well, those other things, how infrequent they may be or how frequent they are, maybe they’re all the time, maybe they’re not, they don’t happen, anyway. It doesn’t matter. If it was only happening once a month and you don’t have a core community or that community is now questioning you because they feel like you’re taking advantage of them or this isn’t why they’re here, they’re here to talk to other patients, they’re not here to always be asked to participate in this project or that project or to book an appointment, they leave and nothing happens. [laughs] None of that other stuff even happens, anyway.
[00:25:44] Colleen Young: Correct. Yes. Absolutely.
[00:25:46] Patrick O’Keefe: You’re so good in 10 minutes, these people won’t give you their 10 minutes? You can’t use that 60 seconds to say, “Can I get time on your calendar because I need 10 minutes,” and then knock it out of the park?
[00:25:56] Colleen Young: Well, I’m hoping to do. My particular challenge right now is just some new hires. Oh, getting themselves up to speed is a long process. There’s a lot going on at Mayo Clinic. I’m just biding my time. I’ll get on the calendar soon.
[00:26:16] Patrick O’Keefe: In our pre-show questionnaire, you talked about how a member might enter your community to discuss one condition but then stick around to discuss another.
You said, “Humans are not defined by one condition, especially as we age, we deal with multiple acute and chronic complex health issues. Mayo Clinic Connect has multiple disease groups, currently about 80. We could easily have twice that many. Each is ultimately its own community. Crossing over into other groups is a benefit underlined by most members. They may come to the community because of a recent diagnosis of diabetes but stay and join the weight loss group, later add the caregivers’ dementia group when a loved one is diagnosed with Alzheimer’s, et cetera. We’re working on making the crossovers into multiple groups inviting without being overwhelming.”
The question you’re asking is like, “How do I write size notifications?” As I read this, it was interesting to me because on one hand, you don’t want to force a condition on someone. You have these sections, we know you’re here for this. You don’t have these things, you don’t care about those things necessarily. How do you go about figuring out what to recommend to people and when?
[00:27:18] Colleen Young: We’re doing a lot more in personalization and understanding where people have been and come to their activity that they’re showing on Connect, but if they came to Mayo Clinic Connect because of chronic kidney disease and a few questions that they had about managing that disease because it’s new for them. However, they’ve been dealing with type 2 diabetes for several years. How would they necessarily know that there’s also a diabetes group that they could go to? Their activity in the chronic kidney disease group is not going to indicate that to me.
Those are just some of the things that we want to be able to put into notifications to allow that discovery to happen as well. Right now we’re using the daily digest, which people can also choose to have weekly. There are things that I can then manually highlight to help that discoverability. Some of the discoverability is not going to be everything for all people, but I might highlight a discussion that’s happening in the diabetes group that piques the interest of that person in the kidney disease group. Right?
[00:28:28] Patrick O’Keefe: Right.
[00:28:29] Colleen Young: It might not be right time right place then, but this is things that, “Oh, I didn’t even know you had a caregivers group. My mother has dementia.” They can find those things.
[00:28:41] Patrick O’Keefe: Yes. It seems like the type of thing where since you do have this strong group of volunteers in the community, that they have the capacity to be your eyes in a lot of ways to see when someone mentions something off-hand in a post in the diabetes section, that, “Oh, I just had this problem,” or “Oh, I’m helping my mom or my dad or my brother with this,” and then have the capacity as a volunteer to either mention in that thread that you have this other group, or I don’t know if you have DM capabilities, but if you do you have DM capabilities to mention a private note, like, “Hey, I saw you said that, I invite you to check out this group.”
[00:29:18] Colleen Young: We tend not to do that in private messages just because we think that it’s probably of interest to other eyes that maybe haven’t raised their hand. That is something that is one of the things that I’ve equipped my volunteers to do to help those connections along and be that concierge of handholding to say, “Hey, you mentioned that you’re also struggling with X,” or “I invite you to come over and join the journal group where we’re journaling about that.” Just even reading between the lines of some of the things that people may not have expressively said.
I listened to your podcast with Priscilla, the Sue Ryder community for end-of-life and bereavement. That’s one of the harder transitions. We also have many groups where people are dealing with end of life, and we also have a loss and grief group. It can be really challenging to help usher them into the loss and grief group. They’ve had a lot of support and met other people that are talking about multiple myeloma, but this person lost his wife to multiple myeloma.
Rather than going over to the loss and grief, because it’s maybe too soon, he’s not ready for that, he’s dealing with funeral plans and what have you, instead, he turns off his notifications before maybe migrating over to the loss and grief group. That’s one of the harder transitions to help people.
[00:30:43] Patrick O’Keefe: Yes. That seems like the type of group, more so than others probably, that you really have to opt yourself into, I would think. This is not a good comparison, but at the FBI, for example, I’ve heard that they deal with certain cases that are more devastating to work on. I’m sure you can guess, cases involving children, things of that nature. They have a unit that you have to opt into, number one, to choose that, and then you can opt out of at any time if it becomes too much.
Grief and loss, it’s a bad comparison, but similar activity in the sense that it feels that type of group, you want to choose to join that to see those conversations and then have the opportunity to be like, “Okay, I have to stop right now because this is such a hard topic for me to discuss.”
[00:31:27] Colleen Young: Yes. It’s even more so in the group that they’re perhaps leaving, they’ve had a lot of support in the blood cancers group, for example, with other people who have blood cancers but they don’t necessarily want to participate there where they’ve made some pretty solid connections anymore because they lost their loved one and other people are still seeking to recover. They self ostracize, if you will.
This happens in cancer quite a bit because people will be diagnosed with cancer and be taking treatment with the intent of recovery or cure or remission. They’re almost the poster child for healthy living and doing everything right. Sometimes recurrence just happens. Now, they’ve got metastatic cancer and they almost don’t want to come back into the group because they don’t want to bring everyone else down. That’s a tough one.
[00:32:24] Patrick O’Keefe: Very tough. How do you balance that out? I’m sure you have members who are very transactional in a sense, where it’s like, “I am here to talk about my condition and to receive assistance, possibly support, but just maybe assistance and information about this thing, and I’m goal, mission-focused.” Then, I’m sure you have members who are a little different and maybe are craving something else. Are there things that you think about building into the community to make it so that it’s not always about your condition? How do you think about that?
[00:32:51] Colleen Young: One thing that I think about a lot connected to what we were just talking about, is that I don’t just want to bring people together. I’m just not throwing them into the virtual waiting room, for example, where conversations might strike up, is I really want people to also set goals and come back and share their progress with those goals, and also to accept their setbacks. That is a little bit of what we were just talking about. I don’t want to just enable commiseration. That happens a lot, for example, in the chronic pain group, “My pain is worse than your pain,” kind of conversations, which really doesn’t help anyone.
Whatever your goal may be, or whatever a member’s goal may be, how small it is, “I just want to reduce my anxiety so that I can go to my doctor consult to read my CT scan. I’m so scared of what it’s going to say.” That’s a goal right there. We want people to be able to come back and share, “What did you learn from your CT scan?” Even if it’s bad news. Those are the setbacks that we want to be able to help them advocate, to help them be strong, to know what questions they can ask because a lot of people leave so devastated from a consult with the doctor that they’ve forgotten to ask questions. They think of many of the questions that they wish they had asked.
The community can help to bolster their courage to make a list and go back to the doctor and get answers, know what that next step is. We also want to applaud people for the successes and triumphs that they had in quitting smoking, for example, how long that they haven’t had that cigarette, and also be there if they do pick up a cigarette again because they can try again. Really important to the community for me.
[00:34:42] Patrick O’Keefe: Having goals, accepting setbacks, bolstering confidence, celebrating wins, that sounds like a good place for us to wrap. Colleen, such a pleasure to talk with you. Thanks so much for making time for us.
[00:34:52] Colleen Young: Thank you. It’s been a pleasure.
[00:34:54] Patrick O’Keefe: We’ve been talking with Colleen Young, community director for Mayo Clinic Connect, and community strategist for CY Connect. Visit the Mayo Clinic Connect community at connect.mayoclinic.org. You can find Colleen on LinkedIn at linkedin.com/in/colleenyoung, and follow her on Twitter @colleen_young.
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 Carol Benovic-Bradley is our editorial lead. Thanks for listening.
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