Patient Council Teaching Course On Stigma & Bias

by | Jan 14, 2019 | Training


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And we have another solution to the policy level. So, Joe, you’re back on stage here, and I have a, yes. I think that was a great one.

Great, thank you. Thank you very much. Yeah.

So happy to be back. So I’m going to go really practical here and talk about what we’ve done in the US to try to address a bias. I previously disclosed my disclosures.

So we really are starting out at the real basic level, which is education, right? We are trying to educate the public and people living with obesity about bias, everything from traditional brochures and guides, and also some information for the media as well to help them better understand appropriate ways to represent people living with obesity. And this really comes from our observation of doing this now for more than a decade, that most people who engage in bias aren’t doing it because they’re intentionally trying to be cruel. They’re doing it because they don’t understand, they lack the knowledge of what they’re doing.

It is unintentional. It’s ignorance. And so we start from that place.

We don’t immediately jump to the assumption that someone is doing or engaging in these kind of activities out of a decision to be malicious or be cruel. And that’s helped us in most cases. I would say if I had to estimate those numbers, it’s 80 percent ignorance and 20 percent cruelty, depending on the situation.

But most of the people that I’ve had to engage with or even call them out on their bias, by the time I’m done with the conversation, it is usually because of their ignorance, not because of cruelty. Though if you’ve ever read the message boards after an article about obesity on the Internet or something along those lines, I think you will find the people that we call trolls that engage in that kind of cruelty. We’ve also done a lot of work with education of health care providers, and we already heard already about the influence that they have on people with obesity.

And I wanted to point out this one project to you, and this is a competency project. So we already heard Mary mention competencies already in her presentation just a second ago. And in the U.S., we’ve actually developed a competency list for health care professionals.

And so really what this is meant to be used for is to guide whatever the health care professional group is in actually developing their training and their certification. And I want to point out that there are only ten competencies, but two of them are listed here, are related to bias. And so I think that was pretty impressive to me to see the U.S. health care community actually putting these in place.

And this was a great project. We can forward the references that are there if you want to track it down and download it. The other thing we do, of course, is have to educate our policymakers.

And what’s not depicted on here is the primary way we do that is actually bring forward people who live with obesity and actually take them to state capitals or to the U.S. capital in Washington, D.C. to actually meet legislators. Because when you humanize this condition and you actually show people these are real people we’re talking about, not statistics, it makes a meaningful difference. But we’ve also done it in other ways.

And in fact, just like the public, our policymakers respond to advertising campaigns. And so we’ve done a variety of them in the U.S., whether it’s ads in airports, major airports in D.C. So how it works when you’re an elected official in Washington, D.C., is that you fly in Tuesday morning and usually fly out Thursday night. There really are legislators only working Tuesday, Wednesday, Thursday, Monday, Friday, and the weekend.

They’re supposed to be in the home district. So we try to hit them when they’re in the airport. And then there are actually newspapers that are specifically for legislators, a role called Politico, among others.

And we run advertisements in those as well. And really the thought process here is, just like Aria talked to us about, about the complexity of obesity, is we actually try to convince our elected officials that obesity is complicated. And we do that because we recognize that you’re actually less likely to engage in stigma if you understand obesity is complicated.

And so it’s a starting point. Obviously we want to go much further with our elected officials, but a good starting point for them is actually to convince them that obesity is complicated, just like obesity stigma is complicated as well. Now I mentioned the media before, and I pick on them a lot.

And I get to do that again on Thursday when I do a master class with members of the media here. But I will speak positively about them for a second, because we do see them as an ally at times. And these are some headlines that have been recent examples that have come forward.

And really this idea that blame and shame are part of the problem is starting to come through in the media. And so while we’ve often seen them as our enemy and the purveyors of stigma and bias, they are at times now moving forward and making a difference in our efforts moving forward. The other thing that we’ve actually done that we found really powerful was actually to give people a way to report bias.

So we actually have a weight bias reporting tool on the Obesity Action Coalition’s website, and it’s pretty remarkable the kind of stories we receive from this. Now we haven’t published the data yet, though we will in the future. But I will tell you that 90% of the reports of bias that we receive are from people who talk about being stigmatized by a health care provider.

So it shows us a target of where it is important that we do work moving forward. And then we have a task force. We actually have a group of volunteers who look at these issues that get reported and actually offer advice to the person who reported them.

So maybe they’re writing to us about a bad experience with a health care provider, or maybe they’re writing to us about an advertising campaign they weren’t comfortable with, and we would actually then turn around and respond to those issues as an organization. One of the things that we emphasize the most is appropriate imagery. We’ve probably seen a couple of these images in the slides here, but OAC, along with many others throughout the world, actually have produced appropriate image galleries.

How we depict people with obesity, the fact that almost always they’re headless and they’re always slovenly dressed and they’re always eating poor quality foods, that has to change. And so we’ve actually created a data bank of photos for people to use, and we slowly are seeing adoption of these images. We see it much higher among our health care provider friends giving their presentations.

Hopefully the media will buy into them soon as well, especially since they’re free for them to use. The other thing we’ve spent a lot of time around is language and trying to convince people to adopt what we call people-first language when it comes to obesity. So you will not hear me, unless I’m quoting someone, use the word obese, because we don’t say someone’s cancerous.

We say they have cancer, right? So people have obesity. They’re not obese. And I think this is important.

And I will tell you that in addition to the American Medical Association recognizing obesity as a disease a number of years ago, just two years ago they recognized the fact that people-first language should be used for obesity. It’s kind of sad they had to do a separate resolution for that, because their existing resolution said that all diseases should be referred to in a people-first way, or a person-first way, but they did. And at least in our mind, a little bit of progress since he’s here today.

We’ll quote Ted right here, and you said it so very well. Obese is an identity. Obesity is a disease.

By addressing the disease separately from the person and doing so consistently, we can pursue this disease while fully respecting the people affected. And that’s an important quote, and thanks, Ted, for sharing that. The other thing, of course, OAC is known for is our activism.

And so I just want to talk to you a little bit about what we’ve done activism-wise, and these are some of the issues we’ve taken on. Yes, those are all real things. There are Facebook pages that talk about fat kids being easier to kidnap and things along those lines.

The reality is what’s out there is pretty horrible. I will tell you that from our perspective, activism is the number one issue among OAC members. And we use all kinds of different ways to address this.

You see them there. And our process almost always starts polite, okay, a nice letter saying, hey, you’re doing this wrong. But we do get not so nice, if need be, moving forward.

And we’ve used this technique pretty successfully. I will tell you one thing to keep in mind, that not everyone thinks of bias the same way. So what I consider bias, you may not, and vice versa.

And that definition has been a challenge for one of our working committees who works on this to actually say, is this bias or is it not bias? It’s not always 100% black and white. I will tell you that in the U.S., our health care providers have been a key champion in addressing bias. I already mentioned the AMA.

However, we have to stay on top of them. So all of our health-related organizations in obesity say, we’re going to use people first language. And then I go to their meetings and maybe 20%, look at their journals, maybe 30%.

So it is a little bit of a learning process. But I will admit it took me two years to get that language out of my own vocabulary. Fat-shaming discussions are definitely more mainstream.

And those aren’t always about obesity, and that difference is sometimes challenging. And then I think I need to acknowledge, in the U.S., we don’t have a great relationship with our partners in the size acceptance movement. However, they’ve played a role in this space.

And I think there’s things to learn. So when I went to the MENA’s meeting in Canada, we learned much more. And I will just say that we see bias improving.

So this is the data that Ted showed you from around the world. This is the U.S.-specific data. We see a reduction in this blaming of obesity.

And we see an increase, the red dotted lines, on the recognition of obesity as a disease. So we are making progress through these efforts, slow but steady. Thank you very much.

Thank you.