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Certified coach and medical educator Kathleen Muldoon discusses her article “AI moderation of online health communities.” Kathleen shares the harrowing personal story of having her social media account disabled when an algorithm mistook compassion for abuse. She explores how online support groups act as critical public health infrastructure for families navigating chronic illness and rare diseases. The conversation highlights the danger of allowing automated systems to police complex medical conversations without understanding nuance or context. Kathleen argues that instead of relying on censorship, health care providers must actively engage in these digital spaces to foster trust. Listen to learn why preserving human connection in digital spaces is essential for patient healing.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome back Kathleen Muldoon, medical educator and certified coach. Today’s KevinMD article is “AI moderation of online health communities.” Kathleen, welcome back to the show.

Kathleen Muldoon: Yeah, thanks for having me.

Kevin Pho: All right. Tell us what your latest article is about.

Kathleen Muldoon: I was writing it from a personal experience that I thought was really important for your clinician audience to know about and to understand. As you know, I am both a medical school professor and medical educator, as well as a caregiver of three children, one of whom has complex medical needs.

What happened this summer that I think is really important to talk about is that I was interacting with another caregiver online through Facebook. That is where a lot of people have online communities of support. I have written academic articles about it wearing my academic hat. This woman was navigating a really complex medical decision for her daughter. I was there providing support. I was not providing medical information or recommendations, but I was there as someone who has walked this journey. Specifically, it was about placing a gastrostomy tube.

From the clinician standpoint, it is a pretty standard surgery and it has pretty straightforward outcomes. But for a mom who has been used to feeding her child in a more typical way, it can feel like giving up. It can feel like an unnecessary surgery. My son has a gastrostomy tube and it has been great, but I also struggled with that decision.

We were interacting, and I was telling her about some of the thoughts that went through my head and some of the interactions that I had with other parents when I was navigating this decision. The next day, my Facebook account was disabled. I wondered what was going on. This is nuts because I am a pretty well-known advocate and a community support person in our local community. After much back and forth and several automated messages, it turned out that conversation was taken out of context and labeled as a violation of standards on child abuse.

As you know, a layman’s term for a gastrostomy tube could be putting a hole in the anterior abdominal wall into the stomach through which food is given. But saying “putting a hole in your kid’s stomach” could be taken out of context. It wasn’t like I was advocating it as just being something that people do. It was within the context. Understanding that actually in that moment, there was a lot that was lost to nuance by the AI algorithm that detected that as harmful.

What I want to talk about is not the rights and wrongs of an AI system navigating something like that, although I am happy to talk about that. It is more about what was lost in that moment. That was peer-to-peer community support. I think it is important for clinicians to know and think about where your patients are getting their support and how they are able to talk about things that scare them. When they feel like they cannot have these conversations, they might grow silent altogether. It was a great loss for me to lose my 12 years plus of community I had built around navigating the medically complex journey. So there was a lot of grief around it. After about six weeks, I did get my account restored. But it took a long time, a lot of advocacy, and my perspective on it has really shifted.

Kevin Pho: Talk more about the importance of these online communities. For all the negative aspects and publicity Facebook gets, I do think that is one of the huge strengths. It brings together people from different communities, different niches, and different interests. It brings them together. I am a member of a variety of communities and it does bring us together. There is tremendous value in that for me. I can only imagine how much value it is for advocates like yourself and those who are also caregivers for medically complex family members as well. So talk more about that.

Kathleen Muldoon: It is a lifeline. I think that especially when you have somebody that is in the rare disease community, as many of us navigating disability in our family lives are, it is how we connect to other people who have the same experience that may not be in our immediate environment. There is value to both situations. I am glad to know people navigating disability from many different perspectives here locally in Phoenix. I have joined forces with them and moved several community-based support systems forward in that manner.

But there is something very particular about somebody who understands your exact situation because of your very niche Facebook group that you have either created or are a part of. When I am awake in the middle of the night afraid about something, needing to vent, frustrated with alarms that just won’t go off, or pain that you can’t seem to assuage, or something that has come unhooked that you don’t understand, there is nearly always somebody who is up at some other distant part of the country. They are up like you are in the middle of the night searching for support or somewhere else that can provide it. That kind of lifeline is really important.

It is kind of like 24/7 support. You can kind of put your frustrations out there in a way that I had always thought could be received from somebody. That is the value of it. I don’t have to watch my words. I can honestly say I am really frustrated right now about this situation and find somebody who can help you navigate that.

There is the aspect of it that it is very tailored to your individual needs. For example, one of the groups that I was a part of for a while was academic mothers. Then as my journey continued, it was academic mothers of kids with disabilities. Then within that, once lockdown started, it was an even smaller group. We have become true friends even though I have met very few of them in real life. So there is a connection from forming those very small niche groups out of the millions of people who are on Facebook. That is supportive.

But one thing I think we need to be aware of is getting that advice. It is never taken as true medical advice, but just like: “This is what happened in our situation. This is how I understand you. This is why we made that decision.” Or: “I hear the frustration here.” That peer-to-peer support has really become a quiet part of our public health infrastructure around supporting minoritized communities, especially those that intersect with the health care system so much as people with disabilities do. Understanding how AI moderation is impacting those communities and how people show up is crucial. If they are stopping to show up specifically around this one particular issue with Meta products, then I think that is an area of concern for clinicians. If people stop talking in those spaces, they might stop talking altogether about those concerns.

Kevin Pho: Are you hearing other stories where the Meta AI moderator may be silencing some of the discussion because perhaps it is a little bit too stringent in its censoring process?

Kathleen Muldoon: Yes. Not only am I hearing stories, but there are a growing number of news articles where people have had their Facebook accounts disabled for similar situations. They are either filing suit or they have been able to go to their attorney or State Attorney General. There have been several in Canada, actually in Ontario, where teachers navigating different situations have been removed because things are taken out of context.

Think about all the things that especially parents are navigating, such as kids’ choices about what they search online with these powerful computers now in everybody’s pocket with smartphones. It can be anything from access to sexually explicit content to understanding some of the websites that people can use for online bullying. If you are asking for support around “My child is experiencing this,” some words that we are afraid of or that have been labeled as dangerous are taken without nuance. They are taken without context and considered to be in violation of standards when actually that person was trying to get support around an issue.

Applying that to medical situations, somebody might say: “I don’t want to put a hole in my kid’s stomach.” All that is picked up is “put a hole in kid’s stomach.” It seems almost ridiculous on the face of it. But that is what happened. I am not the only one that this is happening to. So it is a growing concern.

Kevin Pho: It sounds like from Meta’s perspective, anything that could be tangentially related to child abuse, they are just going to err on the side of taking it out and risking the false positive just because of all the legal risks that they can incur if they don’t do that. Do you think that with the advancements of large language models in AI, they should be able to suss out some of the nuance that is required in these patient support groups?

Kathleen Muldoon: I look forward to that day. We are certainly not there right now. In combination with the fact that human review has gone away, I am certain of this. This is actually what happened because I have a friend of a friend who had a high school friend who is a mid-level employee at Meta. They were able to look at my case and understand that no, this is not what it has been deemed that it is. But unless you know somebody who knows somebody, that is not what is happening now. Without that human review of the nuance and the context, it is just not happening.

So I look forward to the day. Maybe these large language models will be trained in that kind of context and nuance. Will they ever be trained in empathy and the humanity of grief and end-of-life care decisions and palliative and supportive medicine? Or surgical techniques that may seem like abuse when taken out of context? I am not sure. But as of right now, that is not happening.

Kevin Pho: So it sounds like if you didn’t know someone specifically at Meta, there is a distinct possibility that you still wouldn’t have your account.

Kathleen Muldoon: I know people in that situation. I think this is why people are going to media outlets to complain about that loss. For many of us who came to Facebook 10, 15, or 20 years ago even, it became almost like a scrapbook. It is a place where you keep images and they show you memories every day. There are fun things about that in addition to the fact that it is these online communities of support. So those have just been lost for many people.

Kevin Pho: Giving any advice for those members of these online communities? Should they be careful about what they say? Is there anything that could be potentially misconstrued today? Simply not saying it? What kind of advice do you have for these members to avoid situations like this?

Kathleen Muldoon: That is so hard because I wouldn’t want to censor somebody’s language when they are navigating a lot of grief and uncertainty and medically complex decisions. For me, it seems like it is hard to predict what would be picked up as a violation of the community standards. I would say knowing that there are these AI algorithms that are monitoring these systems, just be aware that that is what is happening.

I would also suggest that, and I know this is hard, there are other places really to have those online communities of support. Some people do it through WhatsApp groups. Sometimes people do it elsewhere. I have started doing some writing on Substack and that is a community that is formed a little bit differently. So there are other areas. But everyone is on Facebook, at least people of our age. The younger folks maybe not so much, but I think for parents and people who are navigating these transitions through life, that is where they are.

The other thing I would recommend is that, and I think clinicians should know this as well, every state has a parent training and information center. This is especially for families navigating disability and medical complexity. It is a resource center that supplies supports, training, peer-to-peer networking, and support in your state. It is from birth to 26 years of age across all disabilities. So there are local communities. I am a parent leader for our local PTI here in Circle Families in Arizona. We connect through text and through WhatsApp. We have local meetups. So it is also important to know that those are also available to parents.

Kevin Pho: We are talking to Kathleen Muldoon, medical educator and coach. Today’s KevinMD article is “AI moderation of online health communities.” Kathleen, let’s end with take-home messages that you want to leave with the KevinMD audience.

Kathleen Muldoon: I think for clinicians it is really important to know where your patients are getting their community support. This is a larger part of their care and navigation of health care systems than maybe you realize. So just checking in with them to make sure you know where they are getting support is key. Ask if they are able to ask questions and if they have somebody local or are aware of groups. That doesn’t mean getting in there and moderating them and being a part of those groups, but just being aware of what those communities are and how a loss of that community may affect your patient.

Kevin Pho: Kathleen, thank you so much for sharing your story, time, and insight. Thanks again for coming back on the show. I really appreciate it.

Kathleen Muldoon: Thank you so much.