The Internet & Social Media: New Opportunities for Patients and Families

Dr. John Lantos

So now it's my pleasure to introduce Dr. John Lantos, who perhaps needs no introduction to many of you. He was introduced earlier by Doug, but he is director of the Children's Mercy Bioethics Center at Children's Mercy Hospital in Kansas City. He served as president of both the American Society of Law, Medicine, and Ethics and of the American Society of Bioethics and Humanities. And his current research attempts to illuminate why preterm birth rates in the United States keep rising in spite of better access to health care. And he's going to be talking about can doctors and patients be friends.

Dr. John Lantos

Thank you very much. It's an honor to be here and especially to be on a panel with Wendy, Sue, and Jennifer. both of whom know a whole lot more about this than I do. I haven't done much research on social networking. And in fact, we run a pediatric bioethics certificate program at Children's Mercy. And last year, we had a bunch of topics. And we asked the people in the program, was there anything we'd left off the curriculum? And people said, we need to talk about social networking. So we tried to find some papers. And we found some of the papers. you've seen here already, but there really wasn't much out there. And then we talked to the people in the program, and they had the range of experience that's represented here, too, where there was a huge digital divide. I mean, Facebook, yes or no. Twitter, yes or no. Doximity, yes or no. Tumblr, stumble upon. I mean, everybody's sort of living in a different digital world, and the issues that come up, depending on how much experience and sophistication people have are totally different from, you know, why should I have a Facebook page to, you know, what sort of response, who should I follow on Twitter and all that kind of stuff. And I think what's happened with a lot of this is because as these new technologies come along, as with every new technology, we're only figuring out what it is by using it. So the idea that we would have the rules in place before we figured out the problems was virtually impossible. It's a story that comes up a lot with other technologies. You probably all know some of the famous examples in the history of technology. When automobiles were first invented, futurists predicted that their major problem would be that they would scare horses.

Dr. John Lantos

Or the story of the folks at Xerox who invented a copy machine and took it to IBM to see if IBM would be interested in a joint partnership. And IBM sent it to their marketing people who estimated the market for copying machines at between 6 and 10,000. Failure to understand what a technology can do and where it's going seemed to be essential to the story of technology. And that seems to be part of what's happening with social media. We're using it. And as we're using it, we're starting to figure out maybe what it's good for, what it's bad for, what the risks and benefits are, and how we can maximize the risks and minimize the benefits. And if you look at what professional societies have said about it, you see just this sort of stumbling along in the dark trying to figure out whether this stuff is good. When the AMA

Dr. John Lantos

came out with their statement, you know, they didn't know what to say. It should support physicians' personal expression, enable physicians to have a professional presence. There were maybe some good things you could do with this stuff. But they said, of course, you should maintain boundaries. And for doctors, if they interact with patients, must maintain appropriate boundaries with professional ethical guidelines, just as they would in any other context. And the AMA statement went on. Physicians must recognize that their actions may negatively affect their reputations among patients and colleagues, may have consequences for their medical careers, and can undermine public trust in the medical profession. Interestingly, if you think about what the AMA is doing here, they're talking about not the harms to patients that come from social media, but the harms to doctors that come from social media. They are doing what professional advocacy organizations do. trying to take care of their dues-paying members and saying, don't do anything that might be bad for you. The American Academy of Pediatrics took a very different approach in its first stab at thinking about what social networking was all about. Didn't talk about what the implications of this were for professionals at all, but instead focused on teenagers in particular, but children. and whether social media would be good or bad for children, and focused on some of the issues that have been in the news or were of concern, like cyberbullying and online harassment, sexting, and Facebook depression, a term I hadn't heard before, depression that develops when preteens and teens spend a great deal of time on social media sites and begin to exhibit classic symptoms of depression.

Dr. John Lantos

AAP statement wasn't about whether docs should have Facebook pages, whether pediatricians should engage in social networking, whether doctors and patients could be friends on Facebook or anything like that, but was more about whether this was good or bad for children in different contexts. The AAP has no official position as far as I know on physician use of social networking, but many children's hospitals are starting to develop policies about social networking. As Jennifer said, many people in those hospitals don't know what those policies are. When we surveyed our bioethics certificate program people, everybody said, yeah, yeah, I think, well, people were talking about maybe developing a policy. And we don't know what it is, but yeah, we have a policy.

Dr. John Lantos

And when we asked, well, Are you allowed to have a Facebook page?" They're

Brief voice 1

like, maybe, I think.

Dr. John Lantos

But one interesting thing about the way this has developed is that while hospitals may or may not have policies for what doctors and nurses could do, most hospitals have Facebook pages of their own now. Their policy seems to be, if it's at all restrictive, do what I say, not what I do. Hospitals have their Facebook pages. Children's Hospital of Los Angeles has a feature on their Facebook page where they encourage patients to share their stories. So the hospital is encouraging patient stories, although not doctor stories. Ohio State Medical Center has the policy that you see. These were just a couple that I found on a brief search, but I think other hospitals are doing this. One of the interesting questions that this raises is if doctors shouldn't have Facebook pages where they interact with patients, but hospitals should have Facebook pages, where does a physician practice lie on that continuum? Is it more like a corporate entity like the hospital and therefore a practice Facebook page is appropriate? Or is it more like an individual physician where a Facebook page is not appropriate. It raises questions then about what the proper use of this tool, it could be pro-social, could be anti-social, could violate privacy, could encourage people to violate their own privacy, what this ought to be used for.

Brief voice 1

In terms

Dr. John Lantos

of the title of my talk, this is the only slide in the talk that really addresses that. Should doctors and patients be friends? I think that's just a really icky idea.

Dr. John Lantos

It's hard to imagine a situation in which it would be appropriate unless you imagine Facebook to be something other than what it's turned out to be. And maybe it was the case as Facebook was developing and people weren't quite sure what it was going to become that people thought of it as an email communication or thought of it like a practice-based website. or thought of it like a blog, but I think what Facebook has turned out to be is much more like a family scrapbook or your vacation pictures or your CV or personal letters that you send to your children and friends. So if you commonly invite your patients to your house to look through your scrapbook or read the letters that you send to your children, then having them be friends on Facebook would be entirely appropriate. But if you think that that's a bad idea, I think thinking about Facebook in the same way is really the only possible response to whether doctors and patients should be friends. And it seems like this is one of those issues where when you do the surveys, there's almost any question that you ask people on surveys 80% agree and 20% don't, or 70% agree and 20% don't. So the fact that you're getting 96% and 98% of medical educators saying this is a bad idea is as close to consensus as you can get on a topic like this. So that's the easy question, I think. The more interesting question to me is how these websites will start to be used in ways that are important to physicians and to physician-patient relationships. and will change the way people go out and get information, communicate with each other, and do some of the important things that we do in doctor-patient relationships and in medicine more generally, some of which we've talked a little bit about in other contexts as the conference is going on, but I'm going to spend the rest of the talk looking at three of these, which are informed consent support, particularly social support among patients families who have patients and loved ones in the hospital or have rare diseases, rare chronic diseases, and that is related to the advocacy task. So let me

Brief voice 1

start with social support. I wonder, I

Dr. John Lantos

don't know how to click on a link to get a video to come up. Is that something I do with this thing or? Probably not. Okay. Can you, you can do it though? No. Not going to work at all? That's really sad. Yeah? Try that one. Yeah, this is my son on ECMO. The sorts of things you can get on a quick search are things like these where people who have kids

Dr. John Lantos

Kids who have their kids in the NICU and whose kids go on ECMO, take a video of it, post it on their blog, and talk about what it was like to... Not going to get that one. Probably not any of these then, huh? Hang on, Tucker.

Dr. John Lantos

Yeah, try the first one if you can get it.

Dr. John Lantos

If we can get it up, that would be fun. If not, you'll have to take my word for it. They are remarkable videos that parents share and that take other parents inside the NICU and show them exactly what it means to have your kid's carotid artery cannulated in order for them to go on ECMO. Hang on, Tucker was a video while they were changing the tubes for a kid on ECMO from AV, I think, to VV, the family and a lot of their friends were out in the waiting room and they were going like, go Tucker, go Tucker. And when the doctor came out and said it was successful, they all jump up and down and cheer for Tucker as he got his ECMO

Dr. John Lantos

circuits changed. Other things that you can find, information for parents with autism. Autism, I think, is one of the most web-sited and blogged about problems because I think it's such a difficult problem. Treatment is ineffective and there are lots of stories about where to go, what to do, which doctors are the best at understanding what it's like to live with autism. And some of these websites give lots of information about that. So one of the things that happens with these websites, if you're going to talk to people about autism, or you're going to talk to people about ECMO, or you're going to talk to people about virtually anything, they have much more information than you might imagine at their fingertips from the web about what other parents have said or been through when they do that.

Dr. John Lantos

Same thing is true with social support, and these two domains on the internet overlap significantly, of course, but most of you are probably familiar with these websites, CaringBridge, CarePages, MyLifeline, all websites set up by hospitals for people who have a loved one in the hospital where you can have a password protected, and so closed group of people to whom you send messages and they send messages back. And the messages can sometimes be simple messages of support. For the people with a loved one in the hospital, the posting tends to be almost blog-like. They'll go online once or twice a day to give everybody updates so that people don't have to call or write letters, and it makes the communication much easier.

Dr. John Lantos

if you start to read some of these care pages and caring bridge pages you find there's also an informed consent and an advocacy component where people will start asking questions and other people who are on the caring bridge pages will respond about what their experience was like and it becomes sort of a network of people who have been through similar experiences. It's kind of a crowdsourcing approach to getting information that changes, I think, people's ideas of our knowledge and our expertise, because anything we say, they can immediately go online to check whether other people have heard similar things from their doctors. And this leads to the third, I think, new and interesting thing that's happening with some of these internet-based medical uses, which is patient advocacy. Some of you may have heard this story, which happened earlier this year to a patient who was being cared for at Children's Hospital of Philadelphia. And I have names here because this is all online. This is all in the public domain. But Chrissy Rivera, who was the mother of a child with Wolf-Hirshhorn disease, went on wolfhirshhorn.org, a website for Wolf-Hirshhorn disease, and posted a long letter about a bad experience she had at the Children's Hospital of Philadelphia involving a discussion with the nephrology team there about whether her daughter would be eligible for a renal transplant. And according to the mother's description, the doctors at Children's Hospital of Philadelphia claimed that she would not be eligible because of her mental retardation and cognitive delay. She posted this outraged letter on wolfherschorn.org on January 11th. And by the end of January 12th, 62,000 people had read this blog entry and signed a petition about the entry. You probably can't get to these links either now. January 13th, now 48 hours into this story, CHOP posts a response on their Facebook page. a response to the initial blog entry on wolfhirshorn.org. And over the next few days, a quarter of a million people visited this site. And as I say, they started an online petition protesting CHOP's decision that quickly garnered 50,000 signatures and numerous comments. By January 15th, now three days out, CHOP again felt the need to respond, although CHOP was bound in a way that the Riveras were not to not give any HIPAA-protected information. So their response was, we never talk about individual patients, but we also never discriminate against people on the basis of disability. And it was sort of a vague and uncomfortable response. 37,000 people liked their response, but 180 saw a fit comment, and most of those comments were, in fact, quite negative. And then, interestingly, this particular story sort of went dark for a while. No more postings by either the parents or Children's Hospital of Philadelphia for about a month, at which point CHOP and the Rivera family issued a joint statement

Dr. John Lantos

saying that they'd come to an agreement. Didn't say what the agreement was, but the Riveras said, we really appreciate everything that CHOP has done for us. And CHOP said the event underscores the importance of our responsibility to effectively communicate with families. We appreciate the role the Riveras have played in helping us recognize opportunities to improve communication. And the Riveras said, despite an unfortunate encounter a few weeks ago, we hold shop in high regard, et cetera, et cetera. So this sort of interaction would have been impossible in the pre-social networking days. Organizing a worldwide community to pressure a children's hospital about a decision they may or may not have made or a conversation they may or may not have had, which they cannot directly respond to, but that nevertheless is out there now in the public domain. A similar example is a paper that Annie Janvier and Ben Wilfond and Barbara Farlow published just this week in Pediatrics. Maybe some people saw this, but it's a paper about the experiences of parents who have children with trisomy 13 or 18. in which they identified parents by going to social networking sites, blogs, Facebook pages,

Dr. John Lantos

and others, found parents who made their email addresses available, surveyed these parents about their experiences with trisomy 13 and 18, and found that, at least for this group of parents, the experience was quite different from what most pediatricians describe to families as what the experience will be like. That is, it was generally much more positive. And most of the parents who responded to this survey said that the doctors and nurses had given them quite negative and in many ways quite disparaging information about what life would be like for their child, what life would be like for their family. This article was quickly picked up in two sources that amplified it. a blog called neonatalresearch.org, which happens to be written by a neonatologist named Keith Barrington. Some of you may know that he and Dr. Janvier work together.

Dr. John Lantos

In which he described the lessons, the take-home lessons from this article and some of the implications for pediatric practice, one of which is... don't tell families with trisomy 13 and 18 that it's a lethal condition or incompatible with life because they have all now blogged and seen this paper and they will know that you're either a liar or incompetent. And so, and it was also picked up on many of the blogs for trisomy 13 and 18 and partly as a result of that by many newspapers around the country so that within three days the relevant community found information that was garnered from trolling websites to find the names of people in the relevant community, turned into a peer-reviewed publication in a high-impact journal, and went at least fungal, if not viral.

Dr. John Lantos

And it's now widely known out in the community. So I think there are some interesting and complicated developments as this new technology progresses, and we're starting to learn some lessons, but some we're only beginning to imagine what the possibilities would be. The easiest one, I think, is that doctors and patients should not be friends. The trickier one is figuring out the ways that social media can be useful to both doctors and patients. It's clear that it can be useful in many other ways. We've talked about some of them this afternoon. It can also be dangerous in many ways. But it's changed, I think, and will continue to change the way we think about informed consent, social support, and advocacy, at least. And with the changes that it brings about in those domains will certainly change the way we think about doctor-patient relationships and doctor-patient communication. Thanks.