Family-Pediatrician Disagreements in the Age of Social Media

October 21, 2021

Information

October 20, 2021

Amy E. Caruso Brown, MD, MSc, MSCS, HEC-C

ID7064

To CiteDCA Citation Guide

00:00Good evening and welcome.
00:03My name is Mark Mercurio on the director
00:05of the Program for Biomedical Ethics at
00:07the Yale School of Medicine and also
00:09the Yale Pediatric Ethics program.
00:10How is it the young New
00:12Haven Children's Hospital?
00:13And we get these two groups together
00:16and together we we sponsor ethics
00:19evening ethics seminars about
00:20twice a month and this evening.
00:22I'm particularly happy that we have doctor
00:25Amy Caruso Brown as our guest speaker.
00:27Doctor Amy Caruso Brown is the interim
00:29chair of Bioethics and Humanities,
00:31an associate professor of
00:33bioethics and humanities,
00:34and of Pediatrics at the State
00:36University of New York Upstate.
00:39She is a graduate of the
00:40University of Virginia.
00:41She has an MD from Emory.
00:43She has masters degrees from the
00:45University of Oxford as well
00:46as the University of Colorado.
00:48She completed her residency in
00:49general Pediatrics at the Children's
00:51Hospital of Philadelphia as well
00:53as the University of Colorado
00:55Fellowship training in hematology
00:56and oncology at Colorado and
00:58she's board certified in general,
01:00Pediatrics and pediatric imunk.
01:02She's also a certified in
01:05healthcare ethics consultation.
01:07Hope she is has many hats
01:09that she wears upstate,
01:11but among them she is the thread
01:12leader for the ethics and
01:14professionalism in the undergraduate
01:16medical education program.
01:18Her current research interests
01:19include impact of social media on
01:22trust and communication between
01:23physicians and families,
01:25and social,
01:26cultural and legal dimensions of
01:28disagreements between families
01:29and clinicians in Pediatrics.
01:31In the context of her teaching efforts,
01:33she is particularly interested
01:34in the question of how medical
01:36students understand and enact
01:38social responsibility as part
01:39of their evolving professional
01:41identities across societies and
01:44across healthcare systems.
01:46She's a member of the Ethics consultation
01:48service as well as an attending at
01:51Golisano Children's Hospital in Syracuse.
01:54We're delighted that doctor Amy Crusoe
01:57Brown has agreed to join us today she is,
02:00I think, many of you know
02:02you've read some of her work.
02:03You have read about her as I have,
02:05but tonight we get a chance to
02:07meet her and to hear from her.
02:08So I'm going to ask Amy to speak
02:10for a close to an hour.
02:12She'll speak to us in 45 minutes
02:14in an hour and then afterwards.
02:15Am I invite you to submit your questions
02:18through the Q&A site and I will.
02:20I'll moderate a discussion with Doctor Brown.
02:23I'm through the Q&A.
02:24We will then have a hard stop.
02:27As always at 6:30.
02:28So as always,
02:29I'll apologize in advance to the person
02:31who has that really good question
02:32at 6:29 that I couldn't get to.
02:35But to respect your time and everyone's time,
02:38we will stop at 6:30 sharp.
02:41In the meantime, there is CME available.
02:44I would remind you and that.
02:46In the chat you can see how to get that.
02:48Then you have to text the text
02:51information for getting CME credit.
02:53And also on our website biomedical
02:55ethics at yale.edu you can see the
02:57schedule for upcoming programs were
02:59very happy about the programs
03:00we have lined up this year.
03:02In some ways it's been easier to get
03:04really a stellar speakers like Doctor
03:06Brown because it's easier for them because
03:08we don't have to ask them to travel.
03:11So we try and make lemonade out of
03:14lemons here and and take the zoom
03:16era and use the opportunity to bring
03:18in some really wonderful folks.
03:20And Speaking of really wonderful folks,
03:22I would introduce to you now.
03:23Doctor Amy Caruso Brown and
03:25say Amy it's all yours.
03:28You so much for that wonderful introduction.
03:30I'm I'm really excited to
03:31be here to talk to everyone.
03:33I wish it was in person, but we will
03:36have a great conversation nonetheless.
03:38Uhm, I had never had any financial or
03:40conflicts of interest to disclose. I do.
03:43I really like to start with talking
03:44about positionality and particularly
03:46in the context of social media.
03:48I think it's important that
03:49people know where I'm coming from.
03:51So I came to my work in bioethics
03:54through medical anthropology,
03:56and you will see some of
03:58those anthropological.
03:58Influences show up as you talk.
04:00As I talk you will certainly see
04:02that I am a pediatric oncologist
04:03and that shows up in how I frame
04:05some of these questions and I'll
04:07try to be really transparent about
04:08where the data I'm talking about is
04:11specific to the oncology setting
04:13and where it's more generalizable.
04:15I also have always had a computer
04:18had Internet since I was about
04:209:00 and I have had social media
04:22accounts since my early 20s,
04:24and I think that's really important,
04:25so I have not grown up with
04:27this in the way that.
04:28Say my Med students have,
04:30but I may be more comfortable with social
04:33media than some of you or less comfortable,
04:35and I've had really some really
04:38positive experiences interacting
04:39with families on social media and
04:42being invited to follow their blogs.
04:44I'm also really,
04:45deeply suspicious of most of
04:47the social media platforms,
04:49including Facebook,
04:49and I'm sure many of you have
04:51seen that in the news,
04:52so I try as as a good qualitative
04:55researcher should to be aware of
04:57that and acknowledge all of that.
04:59And I want to present it to you
05:01before I start talking about my
05:03research and how I think social media
05:05is tremendously important to our
05:06communication with families and families,
05:08and particularly the disagreements.
05:12So I wrote traditional objectives,
05:13but I much prefer the idea of guiding
05:16questions for a talk like this and
05:18the questions I'm going to try to
05:20answer or at least explore with you today.
05:22Our first what makes social media
05:24different from older ways of
05:26interacting and information seeking?
05:28What are the ethical issues that
05:30arise at the intersections of
05:32social media and Children's Health?
05:34How my or really?
05:35How does social media catalyze
05:37conflicts and disagreements?
05:39And then how can we all of us pediatricians?
05:42Ethicists, parents,
05:43mentors,
05:44other stakeholders.
05:45How can we respond productively to those
05:48agreements in the context of social media?
05:51So I do think that social media is distinct,
05:54UM,
05:54and you can think about it like this.
05:56At the top,
05:57we have basically all of the ways that we
06:00can engage in health related communication,
06:02including older or more traditional modes,
06:05offline interactions,
06:06face to face interactions.
06:09Under that we have all the digital forms
06:11of communication related to health,
06:13and then within that digital group
06:15is social media specifically,
06:17and the definition that I
06:18have used for social media
06:20in my research. And this certainly
06:21isn't the be all and end all,
06:23but I think this is a pretty
06:24good and comprehensive one.
06:25Is that social media is all the
06:28websites and applications that enable
06:30users to create and share content or
06:33to participate in social networking.
06:35And the key feature is really that there
06:38is dynamic creation and sharing happening.
06:40People aren't just passively
06:42seeking and obtaining information,
06:44they're actually producing
06:45their own content too,
06:46and that will become really
06:49important shortly.
06:50There are many within that
06:51that group of social media.
06:53There's many different types of
06:55activities that people can engage in.
06:57Elizabeth Gage Bouchard at the
06:59University of Rochester has done quite
07:01a bit of work on this and defined
07:03these three categories specifically,
07:05and they are information seeking
07:07material and financial support and
07:09psychosocial support and connection.
07:11And then you'll see as you go through
07:13as we go through some of my data that
07:15most of what parents are telling me
07:16fits within these three groups as well.
07:20What's that social media apart?
07:23UM, so these.
07:23These are the three things that I have
07:26defined from my work and my research.
07:28In my conversations with families,
07:30there may be others,
07:31but I think these are pretty good.
07:32Pretty good overall comprehensive categories.
07:35First,
07:36it's that families don't need
07:37to actively seek out support or
07:40support groups online anymore.
07:41Social media uses a part of their
07:44regularly daily daily activity,
07:46and for most of the families of
07:47children with cancer or families of
07:49children with any serious disease or
07:51even an ordinary childhood illness.
07:53I talked to they say posting about
07:55that was not something they did
07:57just because their child got sick.
07:59It was something they were already doing.
08:01They were already sharing their
08:02children's activities. They were already.
08:04They already belong to parent groups.
08:05They already exchanged Facebook
08:07posts with family members online
08:09and followed relatives,
08:11so incorporating the experience
08:12of having a sick child or needing
08:15additional health information.
08:16Wanting to find things out fits
08:18in really naturally with that.
08:19It doesn't take a lot of additional effort.
08:22The second is that,
08:23as I mentioned that on social media
08:25families are creators, producers,
08:27and managers of information.
08:29They're not just recipients and the
08:31information is just in time to borrow,
08:34borrow a popular phrase for
08:36medical education.
08:37It's the information they want
08:38when they want it very immediate.
08:41It's targeted to their specific concerns.
08:43It's not as general as,
08:45say,
08:45going on WebMD and looking up
08:47an entire page about a disease.
08:49It can be as specific as saying on Facebook.
08:52A child is having this symptom right now.
08:54What should I do?
08:55And it's tailored to their parental role,
08:57so it's it's not information
08:59meant for everybody.
09:00It's often information really
09:02geared towards parents specifically,
09:03or even grandparents or other caregivers.
09:06If you want information as a stepparent,
09:08you can find that I was on a
09:10on a parenting group recently
09:11where the question was,
09:13I am the stepparent to a transgender child.
09:16How can I be supportive of them?
09:17But this is very specific and
09:19very tailored in a way that other
09:22types of online information.
09:23And certainly offline
09:25information often is not.
09:27And finally, social media
09:29platforms democratize information,
09:31so they start very incompletely
09:34and somewhat still inequitably,
09:36but they start to level that playing
09:38field and to allow families to
09:40come into clinical encounters more
09:42knowledgeable and more informed and more
09:44willing to challenge their providers.
09:49I suspect that you could put together
09:52a similar slide for any disease come,
09:54and probably in adults as well as Pediatrics.
09:57So what I'm really saying is,
09:58I think there's an information
10:00mismatch everywhere that if you picked
10:02any topic and asked doctors what
10:04they think patients want to know,
10:05or other health care professionals or what
10:07they should know or what they need to know,
10:09that would be different than
10:11when you ask the patients.
10:12But specifically, in my world,
10:13in pediatric oncology there are many
10:15studies showing that we oncologists
10:17are concerned about the distress.
10:19Because families,
10:20when we give them prognostic information,
10:23or particularly when we have very uncertain
10:25prognostic information to give them,
10:27and we're concerned about overwhelming
10:29families with information,
10:30especially information about late effects
10:32early in the course of their treatment.
10:34At the same time,
10:36there are studies that show 85%
10:37of our parents say they want as
10:40much detail as possible upfront,
10:42about 25% of our patients.
10:44Parents say they want more information
10:46about prognosis at every time point.
10:48Every time they interact with.
10:49Yes,
10:50and interestingly,
10:51families who are more upset about
10:53the information or find it more
10:55distressing are also the ones
10:57who tend to want more of it.
10:59So there's a disconnect there between
11:00what we think families want to
11:02hear from West and what they say,
11:04and that's a disconnect that can be
11:06resolved on social media on social media.
11:08Families can access information in
11:10their own time and at their own pace,
11:12so they have more control over
11:14the flow of information than they
11:16do in an exam room with us,
11:17where we may check in periodically and say.
11:19Do you want to take a break?
11:21But we're often deciding the
11:22bounds of what information they're
11:24getting in that session.
11:26Some families may be more willing to ask
11:29questions that are perceived as dumb,
11:31even labeled as done by the families
11:33themselves when they're talking to
11:35other families rather than health
11:37care professionals and other families
11:39are absolutely more equipped to
11:40provide pragmatic advice to help other
11:43families with children with similar
11:45conditions figure out feeding sleep.
11:47Some of these other parenting things,
11:49and the production of that information
11:51is a is a pretty meaningful psychosocial
11:53benefit for the families who are sharing.
11:56Who are able to help other people
11:58going through what they went through?
12:01From many different studies we have
12:03found that our people have found that
12:05parents and adult patients who use
12:07social media for health information
12:09report greater feelings of empowerment,
12:12more control,
12:13a sense of competence that they
12:14feel better equipped to advocate
12:16for themselves and their children,
12:18and that they may even have better
12:20adherence and possibly improve
12:22health outcomes.
12:22There's some evidence in the adult
12:24literature that using social
12:26media does help in that way.
12:29At the same time,
12:31I wanted to give you all a sense
12:33of just how complex these these
12:36connections and interactions are,
12:38because I'm not really just talking
12:40about patients and their caregivers
12:42interacting with other caregivers,
12:44and they certainly are.
12:45They're certainly talking to other
12:47people who have children with the
12:49same disease or the same issue.
12:50They're talking to their
12:51own family and friends.
12:53Sometimes they're talking
12:54to their health providers,
12:55depending on whether or not
12:56their health care provider has a
12:58professional website or allows.
12:59Personal contact outside
13:01of a professional website.
13:02They may be reaching out to new
13:05health care providers that they
13:06had no prior relationship to,
13:08or they may be connecting with
13:10other health care institutions.
13:11Other individuals with professional
13:13interests and expertise,
13:14and organizational groups.
13:15So I think it's important,
13:17especially as we get into the ethics
13:19of this space that we don't forget
13:21about the presence of other groups online,
13:23especially industry groups,
13:24and that all of these people can be in
13:27contact with each other at all times.
13:28Any of these?
13:30Interactions can be one way or bi
13:32directional or multi directional.
13:35So how might social media
13:37influence our clinical encounters?
13:39So this came out of our our first
13:41social media study in 2016,
13:43which was a series of surveys and
13:45then interviews with pediatric
13:47oncology professionals,
13:49and we identified this these
13:51potential pathways.
13:52So before the visit,
13:53parents might be using social
13:55media to select their provider.
13:57So looking at our reviews online
13:59or asking other families about
14:01the reputation of certain health
14:03care professionals.
14:04They might be acquiring background
14:06information related to their
14:08child's condition on social media,
14:10and they might be already seeking
14:11some support or learning about
14:13other families experiences online,
14:15depending on what the child's
14:16medical condition is,
14:17what the problem is during the visit,
14:20they may be asking clinicians
14:22opinion of information or asking for
14:24interventions based on information
14:26that they brought from online,
14:28and they might become more or less
14:30anxious based on that information based
14:32on clinicians response to their questions.
14:34And the support they received
14:36they also and I'll come back
14:37to this in the ethics they may
14:39ask about other patients care,
14:41especially if this is a center where
14:43they know other families who are
14:45being treated for similar conditions.
14:47And finally,
14:47after the visit they may post
14:49online reviews or informally share
14:51their opinion of the visit online
14:53telling other families go there.
14:55Don't go there. We had a bad experience.
14:57You should do this.
14:58They might verify the clinicians
15:00advice on social media and ultimately
15:02they might be more or less able
15:04to cope with the diagnosis and
15:05adhere to treatment based on how
15:08all of this plays out.
15:10Some of that pause on that for a moment
15:13and tell you about our current study,
15:15because throughout the rest of the talk,
15:17I'm going to present both some
15:19data that we've already published
15:20in some unpublished data and
15:22discuss some things that
15:23we're still in the process of analyzing.
15:25So this is a mixed method study
15:27that we've used written online
15:29questionnaires and interviews,
15:30and all parents of children with cancer
15:32who had ever used social media for
15:34health related information were eligible,
15:36as well as their pediatric oncologists.
15:38So we actually asked them to nominate.
15:39Their own oncologists to participate and
15:42we recruited mainly through nonprofits
15:45that had a social media presence.
15:47So the goal of the study was to describe
15:50how parents and family is evaluate the
15:52benefits and risks of using social media,
15:54including what ethical issues
15:57they themselves identify,
15:58how they navigate disagreements
16:00between their oncologists advice
16:02and information found on social
16:04media and for the oncologists,
16:05how they navigate,
16:07conflict and disagreement related
16:09to social media.
16:10So we started with the nonprofits and
16:12invited them to share a recruitment flyer
16:14that parents could then contact our study
16:16coordinator if they were interested.
16:18We had 90 parents complete questionnaires.
16:20That was about a year and a half ago
16:23now and about a little bit over 30,
16:25expressed interest on a follow up
16:27interview in 22 actually completed
16:29that interview and then all of
16:31those nominated their oncologists
16:33for participation.
16:33And that's the recruitment were a little
16:35bit stuck on this recruitment point.
16:37We've had about eight of those
16:40oncologists complete questionnaires.
16:41The parent questionnaire we gathered,
16:43of course, basic demographic information.
16:45We asked about general social media use.
16:48Pretty widespread and most people are most
16:50people who say they're using it at all,
16:52or using it pretty frequently.
16:54We asked about how they use social media
16:57specifically related to their child's cancer,
16:59about their experiences with
17:01disagreements and conflicting information
17:03about their understanding of trust.
17:05Because in the next part of this work
17:07were very interested in exploring
17:09how social media might affect trust,
17:11and then we also had them fill
17:12out the trusted physician scale,
17:14which was mainly at check on saying
17:17the population in this study is not.
17:19Significantly different than other
17:20parents with regard to their trust
17:22in their own doctors, they're pretty.
17:24They're pretty average.
17:25And then in the parent interview
17:27we asked some open ended questions
17:29about both about their family and
17:31their cancer journey,
17:32about their written responses
17:33to the questionnaire.
17:34So getting in a little more deeply
17:36to some of those experiences,
17:38we have three member check questions,
17:40which for those who may not do
17:42a lot of qualitative research,
17:43is a common quality measure.
17:46And doing qualitative research
17:47where we ask other members of the
17:49Group of the study population what
17:51they think of our analysis so far,
17:53and so we said things like some
17:54parents in our study.
17:55I've said that what do you think about that?
17:58And then we had three questions
18:00asking about their advice for other
18:02parents for health care professionals
18:04and their perceived ethical issues.
18:06And finally,
18:07the physician questionnaire was very similar.
18:09We looked at physicians perceptions
18:11of social media's impact on medicine,
18:13both personally and and at the
18:15larger level of the
18:16profession and their thoughts on
18:18the impact on patient family trust.
18:20We asked about individual and
18:22institutional practices regarding
18:24social media education for families.
18:26Their ethical concerns and then what
18:28they do when families bring health
18:30information from social media into
18:32their into their clinical encounters.
18:35So this is a study from 2017 that
18:37looked at parents and parents in Canada.
18:40Kids with kidney disease and they
18:42saw social media as a journey where
18:45where people often started out in
18:47the pure information seeking form.
18:50But by the end through this
18:52process of interaction,
18:53support and collaboration really moved
18:55into an advocacy role and we didn't see
18:58quite the same trajectory in our study.
19:00Some parents followed that journey,
19:03but I think the interesting thing.
19:04About what parents described was how
19:07their reasons for using social media,
19:10which included everything from
19:12information to communication,
19:13lots of parents just said I couldn't
19:15stand to answer anymore questions,
19:17and so I had to start communicating
19:19with my family on mass and I did
19:21it publicly on Facebook because
19:22that's what I was already doing.
19:24Connection for emotional
19:25or practical support,
19:26finding new treatment options,
19:28confirming recommendations.
19:29But how how they use social media
19:32then lead into either an experience.
19:35The greater psychological
19:36safety or greater risks,
19:38but parents also describe
19:41greater potential rewards.
19:43In an ideal world,
19:45I think that digital and social media
19:47would really enhance these relationships.
19:50It can give a common vocabulary
19:52and align expectations.
19:54It can increase parents confidence and
19:56doctors conclusions and advice talk more
19:58in a moment about when that doesn't happen.
20:00It can certainly build
20:02scientific and health literacy,
20:04and many parents said that they
20:05were able to ask questions because
20:07social media gave them the language
20:09to ask those questions.
20:11It can validate personal experience.
20:13And it can raise awareness and promote
20:16support for research programs and policy.
20:19At the same time,
20:20we have lots of concerns.
20:22We as health care professionals.
20:24These are the four main ones
20:26and perhaps the biggest is.
20:27That information will be misleading,
20:29inaccurate or false,
20:31and the COVID-19 pandemic has done
20:33nothing to assuage that concern.
20:35It's still very,
20:36very pervasive and very real.
20:38I do think it's worth noting that at
20:40least one study looked at accuracy
20:42in in Facebook posts by parents of
20:44children with cancer and found about
20:462/3 of them were medically accurate.
20:48And I've always wondered if we coded.
20:50Our conversations with family
20:51is what would we find?
20:52I hope we would do better,
20:54but I fear that maybe we would be
20:56not not as much better as we'd
20:58like and and at the same time,
21:00addressing that misinformation
21:01can be really time-consuming,
21:03so this is a study from Australia
21:05that looked.
21:06I think it neurosurgeons and
21:08children with cranial deformities
21:09who were undergoing surgery and
21:11found that many of the practitioners
21:14felt they had to re allocate time
21:16to address the misinformation,
21:17and that that was something
21:19they really worried about.
21:20Turn that visits.
21:22We worry that too much information will
21:24overwhelm families, and many families
21:27agreed that social media is overwhelming.
21:30But pairings in at least one study
21:32reported being very strongly advised
21:34not to do so by physicians, with many,
21:37many physicians telling them the information
21:39will just scare you or overwhelm you.
21:41Which, as I'll come back to,
21:43doesn't leave them with the tools for
21:45how to navigate particularly conflicting
21:47information when they come across it.
21:51Well, we worry justly that parents
21:53are sharing in a way that compromises
21:56children's privacy and safety.
21:58And this this came up in our ethical
21:59issues when we asked about them,
22:01but not nearly as much as I would
22:03have expected, or maybe even hoped.
22:05And finally,
22:06I think the shift in power is uncomfortable
22:09for us adult patients who felt their
22:11physicians disapproved tended to avoid
22:13disclosing their sources of information.
22:16Saying, Oh my friend said instead
22:17of I found on social media and
22:19they tended to leave their visits.
22:21More dissatisfied and we haven't studied
22:23that in quite the same way in Pediatrics,
22:25but at least in our population,
22:27I'll come back to talking a little bit
22:29at the end about what led to greater
22:31trust or less trust and encounters,
22:33and people who felt judged definitely
22:36left their encounters less satisfied.
22:39But so there are four main ethical issues
22:41that come up that have been identified
22:44by researchers and then by the parents
22:46and the physicians in our study.
22:48And they're really a matter
22:50of scope and scale.
22:50None of these are completely
22:52unique to social media.
22:53It's just that social media
22:55greatly changes the likelihood of
22:57any of these becoming a problem.
22:59And the extent to which they'll
23:02become a problem.
23:03Privacy is probably the biggest one,
23:06or maybe one of the ones
23:08that I worry about the most,
23:09and the big questions here.
23:11Who should get to decide whether
23:13a minor patients health care
23:15information is shared online?
23:16Is this entirely at parents
23:18discretion and right now?
23:19Legally,
23:19it really is and and I have been
23:22maybe a little bit surprised that
23:24there aren't more adult children of
23:27oversharing parents pushing back on this.
23:29Although there is,
23:30I think some evidence that generations
23:32these shares a little bit.
23:33Let's so maybe that's in response
23:35to their parents sharing,
23:36but right now there's no legal
23:38protections for children with regard
23:40to what information their parents can
23:42post online about their health care.
23:44Even where we may suspect that there
23:46will be downstream consequences or
23:48could be downstream consequences
23:50when that child grows up.
23:51Should health care professionals seek
23:53additional information about a family online?
23:55I tell my students no.
23:57Please don't Google your families.
23:58That's that's not if you were
24:00invited into that space.
24:01That is different and something we can.
24:04Explore on a case by case basis.
24:05Say when a parent asks you to follow A blog,
24:09but otherwise we should not be
24:11out there looking for information
24:13and then how do we respond when
24:15patients or families
24:16seek information about us online
24:18or have found something about us
24:20online and want to ask about it?
24:22Uhm, confidentiality shows up a lot,
24:25particularly with certain conditions and
24:27and centers where families all know each
24:30other and are both on social media as
24:33well as being treated at the same center.
24:35And this is one of those issues that that
24:38could have happened at any time with
24:40conversations in kitchens or waiting rooms,
24:43but it's just so much more likely
24:44to happen when families are on
24:46social media because they can share
24:48information so much more readily,
24:50and that there's a sense of.
24:51Anonymity that often takes people
24:53some barriers down that takes people,
24:55take their guards down a little bit,
24:58so we have to really carefully navigate
25:00when a family is questioned to us is
25:03really rooted in what they've heard
25:05about someone elses treatments and make
25:07sure that we're not inadvertently violating
25:10the other patients confidentiality.
25:12I was incredibly impressed that the
25:14parents in our study independently and
25:16spontaneously identified equity as a concern.
25:19On one side,
25:20we have the resource allocation question.
25:22We have a limited amount of time as
25:25clinicians. How do we balance visit?
25:26Priority is when we may have one
25:28set of goals for a visit and the
25:30family may have another set involving
25:32recommendations found on social media,
25:34or it may just become clear to us
25:36that they really need some education
25:38regarding their social media use.
25:40And then this question of the social
25:42media really leveled the playing.
25:43Field or does it just exacerbate
25:46existing disparities?
25:47Several of the parents in our study
25:49described concerns that social media
25:51just makes it easier for already
25:53educated and well connected people
25:55to be even more educated and well
25:57connected rather than actually.
25:59As I said earlier, democratizing information.
26:04And finally, treatment disagreements.
26:05And this is where all focus for the
26:08second half of the presentation.
26:10So refusal of recommended treatment
26:12and or requests for non recommended
26:14treatment and particularly where
26:15social media comes into play.
26:17These often overlap that family is are
26:20refusing something because something
26:21else has been recommended online,
26:23not what their physician recommended.
26:26This is certainly not unique to social media,
26:28but social media is very much a
26:31catalyst for these disagreements.
26:33And there's really three ways in which
26:36social media catalyzes these conflicts.
26:39The first is as an instigator
26:41of the conflict.
26:42So when families come across conflicting
26:44information on social media or read
26:46something on social media and then
26:48their doctor or other health care
26:50provider says something very different.
26:52It can be an uncover of conflict.
26:55When we,
26:55when we do realize what families are doing,
26:58their social media activities and those
27:01reveal ethically concerning behavior.
27:03And finally it can be in.
27:04Accelerator of conflict.
27:05When a pre-existing disagreement goes viral,
27:08either intentionally or unintentionally,
27:10on the part of the family.
27:13Social media is an instigator.
27:15These are all examples from our study.
27:17So in one case,
27:18a parent described being questioned pretty
27:20aggressively by other parents
27:22regarding her daughters,
27:23physicians decision to monitor for recurrence
27:27with ultrasound rather than CT or MRI.
27:29And although we had physician parent dyads,
27:32most of the physicians did not recall
27:35specific incidents of conflicting
27:36information in the way that parents did.
27:39So the only the only side of the information
27:41I really have is the parent side.
27:43But her her impression from this
27:45encounter was that her center was
27:47practicing in a more out of date
27:48way or was not using the most
27:51up-to-date evidence based guidelines.
27:52Another parent reported learning
27:54that radiation was sometimes
27:55effective for her child's disease,
27:57according to other parents of
27:58children with the same disease.
28:00Although she thought her oncologist had said,
28:01but it never worked in this parent described,
28:04never getting a satisfactory resolution
28:07on that conflicting information,
28:09and then another parent described
28:10belonging to a group where they all
28:12got together and talked about the.
28:13Variation between their programs
28:15and advice regarding restrictions
28:17related to everyday life which.
28:19For any of you who are oncologists
28:21in the audience will know,
28:22there is a lot of variation and some
28:23programs are much more conservative.
28:25Others are much more relaxed.
28:27That's not necessarily something
28:28we disclose to parents,
28:30or that parents realize until they start
28:32talking to people treated at other centers,
28:34and all of those were the instigators
28:38of conflict with their physicians.
28:40So this is a quote from one of
28:42our participants who wrote.
28:43There are tons of treatment options
28:45that are and never will be presented
28:47by my physician and she she described
28:49it as being very frustrating that she
28:51had to spend hours on Facebook to find
28:53the most fitting treatment for her child.
28:55When she's not the one
28:56with the medical license.
28:58And I think this really speaks to the
29:00way in which social media applies
29:02a new form of pressure to parents
29:05who have always in in many venues
29:07and many settings sometimes.
29:08Felt like doing the best for their child
29:12means making sure no stone is unturned.
29:14With social media there are millions
29:16of more stones to turn over than ever
29:19before and that's a lot of additional
29:21stress for families as well As for
29:23physicians and health care providers
29:25who feel like they have to respond to
29:28every stone the family turns over.
29:31In our study,
29:32so 70% of our study participants.
29:34That's the ninety who completed
29:35the questionnaire,
29:36reported that they'd experienced a
29:38situation in which information on
29:40social media conflicted with information
29:42provided by their oncologist.
29:44And again, this is the parents experience,
29:47but I actually think that's what's
29:49most important.
29:49I,
29:49I think the important part is that
29:51the the parent felt the conflict
29:53and saw the disagreements,
29:54not whether or not the information
29:57provided in clinic actually conflicted.
30:00And these involved everything from
30:02diagnosis all the way through treatment,
30:04adverse effects, quality of life,
30:06and complementary and alternative
30:07medicine was a big one, unsurprisingly.
30:11Another parent wrote every time
30:12I have a concern.
30:13I Google or use social media of
30:15some kind to educate myself on
30:17what others experience and then
30:19question our team of doctors.
30:20Never do the two answers match.
30:23I'm not surprised by this.
30:24This was very much my experience
30:27as a junior physician.
30:28Whenever I asked a question that
30:30wasn't something that would normally
30:32get studied in a clinical trial or
30:34have rigorous evidence behind it.
30:35It's it's just so common,
30:37I think much more common than parents
30:39realize until they're deeply immersed in.
30:41Health care that we don't have all
30:42the answers and that we're doing the
30:44best we can based on our experience,
30:46but the answers may not align even
30:48between two providers on the same team.
30:53Another parent wrote the interactions
30:55of Facebook or hope when doctors
30:57say she's out of options.
30:58Facebook says try this. Will it work?
31:01TBD, but it's hope when our medical
31:04team continually gives us none.
31:05This could turn out to save her life.
31:09And although part of me is troubled by this,
31:11I also I think this is a really
31:14important view for us to recognize
31:16and and be willing to work with.
31:19On the flip side,
31:20we had some families who had experienced
31:23almost a harassment online with many
31:27people in their circles challenging
31:28their decisions to use traditional
31:30chemotherapy to use conventional medicine,
31:33and saying that you're actually
31:35killing him by doing this.
31:36And, and this is for at least some family
31:38is going to be the start of planting
31:40that seed that maybe we're not doing the
31:42right thing by seeking Western medical care.
31:45Maybe these oncologists don't
31:47know what they're doing.
31:49A social media,
31:50as an uncover of conflict.
31:52So I have actually three different scenarios,
31:55both from our study and from our hospital
31:57that I think are pretty representative
31:59of the ways in which social media
32:01can uncover or reveal conflict,
32:03rather than instigating it.
32:04This one from our hospital would
32:07involve the patient who was receiving
32:09experimental therapy out of state,
32:11and her parents had set up a go fund me
32:13page seeking funds to pay for treatment
32:15when the team learned about this,
32:17they became very concerned that.
32:19Her parents were being dishonest
32:20with their friends and donors about
32:22their financial situation because
32:24they had good health insurance.
32:25The experimental therapy was not
32:27at any cost and we had connected
32:30them with several different sources
32:32of financial assistance for any
32:34uncovered expenses and in many ways
32:36this is mostly about the staff's
32:39moral distress at having to sit
32:41with this legally and and I think
32:44ethically in terms of confidentiality.
32:46There wasn't really an appropriate
32:47recourse for us to do anything.
32:49About this and we didn't necessarily
32:51know everything either.
32:52There may where there may very well have
32:54been pieces of this family's financial
32:56story that we didn't know about,
32:58and I think there was also some concern
33:00that this was making the hospital
33:02look bad when we were trying to
33:04provide assistance for this family.
33:06So that was one source of of
33:09ethical concern and distress.
33:11The second one,
33:11and this has come up a lot in
33:13different settings lately and I
33:15heard someone else talk about a
33:17similar case at CBH last week.
33:19Involved a teenager who was admitted
33:20to the ICU and the team discovered
33:23that his mom had started a really
33:25detailed and nuanced blog about his
33:28condition that included photographs,
33:29and particularly regardless
33:31of the child's age.
33:32I think there are appropriate
33:34concerns about the child's privacy,
33:36about the dignity of the child,
33:38and potentially about what
33:40are the implications of this.
33:4110 or 20 years down the road
33:43when someone googles them,
33:44could they find this,
33:45but given his age it was
33:47an especially urgent concern because he
33:49wasn't a newborn where this might only
33:52come back to be important to them in
33:5415 or 20 years he was a teenager who
33:56was applying to college and and would
33:58be very likely to be in situations
34:00where people who know him might find
34:01this or might read about this and
34:03might see him in a position that he
34:05wasn't really uncomfortable with.
34:07At the same time his mom, like a lot of
34:10parents in this situation felt like this.
34:11Was a really important source
34:13of support for her.
34:14This was a way of channeling her feelings of
34:16feeling more empowered and less helpless.
34:18It was a way of connecting
34:21and updating other people.
34:22And yes, there are lots of ways
34:24to do this that would be perhaps
34:26less public and more protected,
34:28and that I'll come back in the
34:29recommendations is part of the reason we
34:31need to do more education with families.
34:35Couple more quotes from our
34:37study so another family wrote,
34:39I think once you post anything on there,
34:41you have to understand the
34:42fact that it's out there.
34:43People can find that people can read it.
34:45So if you don't want something out there,
34:46don't post it about your child.
34:48A different parent wrote.
34:49I made the decision when I started
34:51writing and sharing online and all of
34:53that that we were kind of an open book.
34:55And for all of these parents,
34:57when we interviewed them,
34:58we probed a little more because these
35:00are pretty reflective of the general
35:02sentiment that most of the parents
35:04in our study were really focused.
35:06On getting through this right
35:07now and there wasn't a lot of
35:09concern or consideration for what
35:11might happen down the road,
35:13or for what the child might think about this.
35:15Someday,
35:15one parent did think that this was going
35:17to be a really great record for her
35:19child to look back on her experience,
35:21but most people were not worried about,
35:23say, their child's first romantic partner.
35:25Googling this and finding really extensive
35:28information or anything like that.
35:31And finally,
35:32this one is from our hospital
35:34several years ago and it is one of
35:36these sort of inciting events that
35:38really got me interested in social
35:40media and social media ethics,
35:41so this was a teenager who had had
35:44had a really prolonged hospital
35:46stay with a lot of complications
35:49and his parents took to Twitter
35:51to vent about their care.
35:53All the while actively refusing certain
35:56interventions and requesting others.
35:58And this is a timeline from diagnosis.
36:01To win the patient was finally transferred.
36:04It would lasted about 12 months altogether.
36:07Uhm,
36:07and around the time of the ICU admission.
36:11This is something the dad tweeted
36:14about the respiratory therapist and.
36:17Pretty soon after that,
36:18the staff discovered the Twitter
36:20feed and went.
36:21When he tweeted, can any idiot be a nurse?
36:24He started tweeting about making
36:27staff cry and reveling in that
36:29sometimes verged on threats,
36:31but the general consensus was they weren't.
36:34It was a dad venting and not someone
36:36who was actually specifically
36:38threatening anyone but at the
36:40same time through all of this,
36:43the staff were checking people were going
36:45on line between shifts or even between.
36:47Patient seeing what did he tweet now and
36:50it really contributed to an atmosphere
36:53of tremendous stress of moral distress.
36:57I we at that point had several nurses
36:58who were thinking about leaving,
37:00either going to different units or
37:02going to a different hospital entirely.
37:04Other people describe to me throwing up
37:05before they came in for a shift every day,
37:07because this was so stressful,
37:09and this is not we've always
37:11had angry families, right?
37:12This is not that that part
37:14by itself is not uncommon.
37:17The part where.
37:18Things that someone might have
37:19vented in a private phone call to
37:22another family member about their
37:24care about their frustration.
37:25We're now public and people
37:27feeling like anyone I know
37:29can see this can see the
37:30criticism of our hospital,
37:32our institution. That is very,
37:33very specific to social media and the
37:36way in which this played out in public.
37:39And finally, social media is an accelerator.
37:42So many of these will be familiar
37:44to people from the news.
37:46UM, so this one is a 7 year old who
37:48had a life threatening viral infection
37:50was ineligible for a clinical trial,
37:53and his parents successfully mounted a
37:55social media campaign that pressured the
37:57pharmaceutical company to provide the drug.
37:59There are many more instances like that,
38:01some successful,
38:02not some unsuccessful,
38:04but where parents after,
38:06after disagreeing with their physician,
38:08either with the intent of starting.
38:10Such a campaign,
38:11or just because they too are going
38:13online to vent and it happens
38:14to get picked up and go viral.
38:16The conflict really accelerates and
38:18really starts to push people into
38:21corners and away from the kinds of
38:23compromises that we normally think of
38:26as a good solution to disagreements.
38:28One parent that this is just
38:29one parent in our study.
38:31I and I do not think representative
38:34overall of parents,
38:35but I think this quote shares a lot in
38:38common with those conflicts that go viral.
38:40And she wrote.
38:41I've pushed very hard for
38:43alternative options.
38:43Many that go against hospital policy,
38:46too many to list,
38:47but I've informed them that we are
38:48pushing things directly into the G2.
38:50I'm careful not to ask permission or
38:52opinions because I know what they will be.
38:55I'm very assertive.
38:56They also know my blog exists.
38:58With 100,000 plus followers
38:59with daily updates,
39:00so I think that's in my corner,
39:03so the sense was that she felt that
39:05having this large following helped her
39:07get what she want from from the team,
39:10and it actually helped help prevent
39:12the team from openly disagreeing,
39:13though she knew that they might quietly
39:16disagree with some of the decisions.
39:19So this list is from a paper that
39:21Brian Warren John Lantos published
39:23in Pediatrics a couple years ago
39:25where they looked at 12 different
39:27cases that went that went viral.
39:29So cases of conflict that became
39:31very public and they looked at
39:34reasons parents said they initiated
39:36their social media campaigns,
39:37the first and maybe the most obvious
39:39is just to change doctors minds.
39:41But some of these,
39:43particularly the idea of being heard of
39:45feeling empowered and feeling that they have.
39:48Done everything possible,
39:49really overlap with things all over
39:51the parents in our study said about
39:54why they turn to social media and how
39:56they think social media benefits them.
39:59Another parent wrote we as a family have
40:01had situations in a smaller hospital,
40:03and so it was nice to be able to go to my
40:05Facebook group and be like is this normal?
40:07Is this OK?
40:08Is this right?
40:09And then get a parents opinion?
40:10Who says absolutely not?
40:12Don't leave there,
40:13you know,
40:13stand your ground.
40:14I'm sorry you're going through
40:15this and so this parent
40:17was really describing that empowerment piece.
40:19That feeling of when they were not
40:22sure whether they should be entrenched
40:24themselves in the disagreement, or whether
40:27hey maybe the team is actually right.
40:29And we should agree to what they want.
40:30They went online and they got support to
40:33bolster that resistance or that conflict.
40:36And that is very much social
40:38media acting as an accelerator.
40:40Uh, so how should we respond?
40:43First we need we need to accept
40:45the things we cannot change and I,
40:46I mean that really seriously,
40:48social media is here to stay and
40:50I I have a 9 year old so I very
40:52much hope that some things work
40:54themselves out before he is online.
40:56A lot in a few years,
40:58but I also know that's probably pretty
41:00unrealistic and we're going to be
41:02stuck with this for the long haul.
41:04And really, we should remove the phrase.
41:06Just don't go on online from our
41:08repertoire that that is not a
41:10helpful statement for the vast,
41:11vast majority of families.
41:13And it's actually pretty dismissive and
41:16closes off the kinds of conversations
41:18we want to have with families in
41:21order to prevent these disagreements.
41:23We need to do more anticipatory
41:25guidance and I'm going to show you
41:27in a moment how families tell me
41:28they assess credibility so we can
41:30compare it to what we think would
41:32be actually meaningful assessment
41:33of credibility of information.
41:35But they need those skills.
41:36How do we assess credibility of information?
41:38How do we identify misinformation?
41:41Parents need to know more about
41:43the privacy risks.
41:44Many parents in our study describes some
41:47degree of harassment happening online.
41:49Some talked about identity theft,
41:51but those are things that a lot of
41:52other parents said. Hey, I never.
41:54Thought about that when I was
41:56thinking about crowdfunding or making
41:58a public blog about our journey,
42:00and many of them had not really thought
42:02about the right to an open future.
42:04The right to future privacy
42:06for their children.
42:07So those are all things we
42:08could be doing more education
42:10about in hospitals and clinics.
42:12So one more it's might be my last quote,
42:15but this mom wrote.
42:16I deleted my post because there was this
42:18influx of like that's not a good test.
42:20And why would you do that?
42:21And that's awful and you
42:22need something better.
42:23And then that sends you into panic
42:24mode because you're like who?
42:26Maybe we didn't make the right
42:28choice and when she was saying this,
42:29I thought this is something
42:31that we might have been able to
42:33anticipate with more education.
42:34We might have been able to help
42:36this parent be prepared for this
42:38and maybe be a little bit more
42:40judicious and what she asked online
42:41or what kind of information?
42:43Did she thought or just make her
42:45prepared for the fact that she might
42:47find conflicting information and
42:48she might hear from other parents
42:50who say something's not right when
42:52something really is the best thing
42:53for her child?
42:56So this is how parents tell us
42:58they check their information.
43:00So many parents reported
43:02verifying information,
43:03though not always with a
43:05physician or professional source.
43:07But many did.
43:08Very often they verified it with
43:10either other parents of children with
43:12cancer or just with their family or friends.
43:14Many said they thought about the level
43:16of urgency and potential impact and
43:18that their approach was different
43:20depending on how urgently they
43:22needed to act on the information.
43:25And they all described checking for
43:27what they thought were characteristics
43:29of trustworthy information.
43:30Unfortunately,
43:31many of those characteristics are
43:33also reasons that information
43:35and misinformation spreads.
43:37A man and and can go viral online,
43:40so most parents liked first-hand
43:42information so they didn't want
43:44to hear about someone.
43:45Step mothers, cousins best friend.
43:47They wanted to hear from people
43:48saying this worked for me,
43:49or this worked for my child.
43:51They found more detailed information
43:53to be more accurate and which is.
43:55Not necessarily backed up by anything,
43:57but I can see why that would be.
43:59They looked for current and
44:01up-to-date information,
44:02so that was good and they
44:03looked for converging opinions,
44:05which for some families meant.
44:08Apparent recommending the same thing
44:09that they also saw show up on WebMD,
44:12but for other people just meant the same
44:14information being posted in multiple places,
44:17which is often just a sign
44:18that something has gone viral.
44:20That something has those
44:21characteristics that make it spread.
44:23So I think we can do better in training
44:26families to identify credible information,
44:29but our family is also talked
44:30about what they considered to be
44:33positive and negative responses from
44:34their physicians when they brought
44:36up these areas of disagreement.
44:38Are conflicting information or said hey,
44:41I want to try this so positive
44:43responses were pretty much anytime
44:45anyone was willing to answer questions
44:47and didn't avoid the discussion or
44:49not answer the question when they
44:51listened and showed an interest in
44:53what the parent learned online.
44:55When they affirmed the importance
44:56of parental education so parents
44:58felt better when people said hey
44:59you you did a good thing for your
45:01child by trying to go online trying
45:03to do your own research and they
45:05valued when people either offered
45:07to modify treatment so saying hey.
45:09Well, that won't hurt,
45:10so let's try it or referring for a
45:13second opinion to check the information.
45:15And on the flip side,
45:16they didn't like the opposites.
45:18They didn't like when people
45:19became angry or yelled at them,
45:21which happened several times or
45:22when they were just told to not
45:24go online to not worry about it,
45:26to dismiss it.
45:27Most parents could not dismiss it,
45:29they hung onto it.
45:31And they also described ways in
45:34which certain responses promoted
45:36their trust and ways in which other
45:38responses negated trust and the
45:40big ones were overall openness
45:42to these discussions.
45:44Honesty, transparency, and humility.
45:47So one parent described oncologists saying,
45:50I can't answer that.
45:50That's a great question.
45:51I don't have the answer and that they
45:54were consistently willing to do that.
45:56Really helped the family trust
45:57this physician and know that
45:59when they didn't give a correct.
46:00When they did give an answer,
46:02they could feel confident that it
46:03wasn't something just made up that it
46:05was a real meaningful answer because
46:07the physician was also willing to
46:09stay when they didn't know the answer
46:11and finally shared decision making.
46:15So from from all of that data
46:17and from the parents responses to
46:19questions about what they would tell
46:22providers and what they would tell
46:24other families we put together these
46:26eight recommendations and I'm going
46:28to highlight the ones that I think
46:30are most important to our discussions
46:32of conflict and disagreements.
46:33And the first is that idea of
46:35being open to parents,
46:36asking questions and raising concerns
46:38based upon information from social media.
46:41The second is being honest about
46:42what we know and don't know.
46:44And and for this one.
46:45The parents wrote we'll probably
46:47Google everything you say,
46:48or at least check it with our networks
46:50and other parents and it's not personal.
46:52It doesn't mean we trust you,
46:54and in fact it could be a sign that
46:55we do trust you because we're going
46:57to work it through when we hear
46:59things we don't understand or get
47:00advice that we're not sure about.
47:03They also suggested using social
47:05media ourselves, and I have done this.
47:07I suspect many people in this
47:09audience have done this,
47:10but it really does help give
47:11some insight into families,
47:12perspectives and into what
47:14the what kind of information.
47:15Was readily accessible to families online,
47:19but they warned us if we do be cautious
47:21and take care of ourselves and I really
47:24appreciated that consideration that
47:25many of the parents thought about
47:28how overwhelming social media was for
47:30them and consider that it might be
47:33equally overwhelming for pediatricians
47:34and other professionals going online.
47:38And they said,
47:38no,
47:39that it's OK if sometimes they prefer
47:41to look up what we said rather
47:42than asking about it immediately,
47:44and that this is a way that they
47:46can exercise control and agency
47:48when they're otherwise powerless.
47:50And that's OK that that that's
47:52not necessarily a bad thing.
47:54And I'll skip to the last one,
47:56which is to work with our hospitals to
47:58develop formal guides and education,
47:59and so far in in our first and
48:02in our current physician study,
48:04most hospitals do not have a
48:06lot in this area,
48:08and particularly no one yet has told
48:10me about anything to help families
48:12with crowdfunding ethics and the
48:14privacy concerns around that.
48:15So if you have any resources,
48:17I'd be very interested to see them,
48:19but especially around how to evaluate
48:21the credibility of information
48:23online and spot that information.
48:25And even how to take advantage of
48:27the good parts about what's online
48:29because families didn't necessarily
48:31know this when they started out.
48:33And finally,
48:34I want to just circle back in my
48:36last couple of slides to the very
48:39public disagreements because they
48:41think this is a really important
48:43point that when disagreements truly
48:45go viral and become interesting
48:47to the larger public,
48:49often driven by social media,
48:51it does become about more than
48:53the interests of the individual,
48:54patient or family.
48:55And really about public trust
48:58in hospitals and Pediatrics.
49:00And I think then we,
49:01as hospitals and organizations.
49:03Have a responsibility to respond in
49:06a more nuanced way,
49:08and so I would add one more thing to
49:10this list of how we should respond,
49:12which is that we really need to disrupt
49:14adverse aerial reasoning or framing,
49:16or the idea that it's Google
49:19against the medical degree,
49:21because that's not what most families
49:22are doing when they go online,
49:24even when they disagree.
49:25And even when those disagreements
49:27are really entrenched,
49:28it's not that people are confusing these,
49:30it's that they don't
49:31necessarily trust us right away,
49:32and we need to work with them to build up.
49:34Trust, so I would scrap that one come
49:36from our approach and try to find
49:39ways that work more collaboratively
49:41and that don't pick us as healthcare
49:44providers against social media,
49:46but working together to get
49:48better health outcomes.
49:50I'm gonna stop there.
49:51That was one of my better timing on talks.
49:54Come and take questions.
49:57Thank you so much,
49:58Doctor Trousseau Brown, that's terrific.
50:00There was a lot of really
50:02interesting things in there.
50:04I would invite everybody to reach out
50:05through the Q&A for your questions
50:06and I'll moderate the conversation.
50:08I'll present your questions to me,
50:10but I want to start with with a question
50:13that's been that's been on my mind,
50:16and I think a lot of people's
50:17minds for a long time.
50:18And it's a fascinating psychological
50:20phenomenon that I don't really understand,
50:23but I think it's become, of course,
50:25with regard to the vaccine with
50:26the resident COVID vaccine.
50:28It's a big issue,
50:29but it's not just about the COVID vaccine.
50:31I've been fascinated to see time
50:33and again that there's a family
50:35that has a physician for years that
50:38they've had a good relationship with,
50:40and then they read something online
50:43and they actually trust that more than
50:45they trust this physician with whom
50:47they've enjoyed a good relationship.
50:50Can you speak to that?
50:51Why that might be reviewed,
50:52made the same observation.
50:53Sometimes
50:54I have made the same observation.
50:57And I I don't know that there's
51:00just one answer for some families.
51:02I've looked back critically on
51:04on my relationship with them,
51:06and this is really speaking from
51:08personal experience and said, you know,
51:10I think the trust was very situational.
51:13I don't know that they ever trusted
51:15me completely or across the board,
51:18or that the you know,
51:19there's a lot of different ways we can trust
51:21we can trust a specific recommendation,
51:24or we can trust a person
51:25across the board to give.
51:27Any recommendation,
51:27and as I've looked at some of these,
51:29I have specifically thinking of one
51:31that a patient that came in well after
51:34her cancer therapy and we are her mom,
51:36wants it to tell me all about masking
51:37and how it was going to kill us.
51:39And then that led into the vaccine and
51:41how she doesn't believe any of that.
51:44She doesn't believe that vaccines don't
51:45have these really late side effects,
51:47and I thought I can't believe they let me
51:49give this child chemotherapy like that.
51:51That's an incredibly trusting act,
51:53but I look back and I think yeah,
51:56they trusted me to an extent.
51:58But they also checked a lot of what
52:00I said with their online sources,
52:03and it just happens that in that
52:05case we were aligned and now
52:08we're not aligned and they have so
52:10many more sources of information.
52:13People who they had an ongoing
52:14relationship with in those years where
52:16I was only seeing them sporadically,
52:18but I think that's winning out.
52:20So sometimes I think that's what it is.
52:21I I think that that I may have felt
52:25there was more of a trusting relationship
52:27there when it was really very.
52:29Very situationally specific trust to me,
52:32treating and curing their child's disease.
52:36Another theory that has been floated,
52:38and I think this holds up when
52:39I look back on some families,
52:41is the idea that when we meet people
52:43at a point of critical illness they
52:45need someone to trust and so they
52:47may have trusted us and that this
52:49may go for the situations in the
52:51nick you and they pick you and
52:53oncology trusting in the moment of
52:55crisis because you need someone to
52:56keep you afloat through this while
52:58your child is critically ill.
53:00But now we're not really
53:01talking about critical illness.
53:03We're not talking about something
53:04that we can see and touch in the
53:06way that we can see our child.
53:08Sick in the ICU?
53:09We're talking about a disease
53:11that still has not touched a lot
53:13of people or not touched as many
53:15people as the numbers would suggest,
53:17and that that's where that's
53:18coming from that this.
53:19This doesn't have that level of urgency
53:21and the way those decisions did.
53:23So again,
53:24families can defer to social media
53:27and the last one is this idea
53:30that social media is just more
53:32powerful than us right now.
53:34And I think that goes back
53:36to medicine and physicians
53:37not having figured out how to.
53:39Harness it for good.
53:41Not not having figured out how to
53:43use it to disseminate expertise
53:44as effectively as people are using
53:47it to disseminate misinformation.
53:50And then I guess is to some extent
53:52to a significance that on us and the
53:54challenge to us if that third possibility
53:56is at least part of the problem.
53:58I mean, I do think that people tend to
54:01believe what they see in print things that
54:02are in print center carry some authority.
54:04It used to be if it was in print.
54:07Not entirely,
54:08but to a greater extent than now.
54:10Somebody who knew something largely
54:12was responsible for writing,
54:13and now if it was in,
54:14you know the National Enquirer
54:15as opposed to Time magazine.
54:17It might have been something different,
54:18but the reality is now,
54:20of course anybody and everybody
54:22can put something in print
54:23at a moment's notice and do,
54:25and and it's very hard to tell
54:27whether you're hearing from,
54:29you know, a brilliant hematologist
54:31oncologist from from State University,
54:33New York, or just somebody who
54:34once had a cousin who had cancer,
54:36and therefore has an opinion about it.
54:38Uhm, is they all?
54:39All those the font looks the same,
54:42you know?
54:42Yeah,
54:43that's the thing that font really does.
54:45The websites look equally professional.
54:49Even when and and I think for all of us,
54:51how do you know a website is not
54:53a valid source of information?
54:55It's this very subtle feeling that things
54:57are just a little bit off after a career
55:00of looking at scientific information,
55:03can we expect families to
55:05do the same immediately?
55:06I think no, no, not without more
55:08support and more education from us.
55:11Yeah, that's that's, uh,
55:13that's that's well put,
55:15I'm gonna invite the folks in the to
55:18submit any questions through the Q&A.
55:21Do you have another one here?
55:22Which is you had mentioned that you
55:26discouraged families from Googling?
55:29Excuse me, you discourage
55:30physicians from Googling.
55:31Families don't look up the
55:32families on the Internet.
55:34Could you explain why?
55:37Yeah, I think it's on on
55:40one level it's asking.
55:42It's inviting a difficult situation
55:44that we won't know how to resolve
55:46or be able to resolve ethically.
55:48And this for me this has been mostly
55:51asked in the context of teenagers,
55:53so my colleagues who either do a lot of AY
55:56oncology or do adolescent medicine asking,
55:58is it OK to look up my patient or
56:01I did look up my patient and I saw
56:04him drinking or her posting about?
56:07A sexual encounter,
56:08and now I'm wondering,
56:10do I bring this up in my visit
56:12and and I think that that is very
56:14invasive of patients privacy.
56:16There there is not an expectation
56:18or there shouldn't be an expectation
56:20of privacy on the Internet,
56:21but that doesn't mean there's not an
56:23expectation that your doctor won't
56:24look you up on purpose and read about you.
56:27And I think that expectation for most
56:29families or for most patients is still there,
56:32that when they're sharing online,
56:34they're not thinking their
56:35physicians are going to look it up.
56:38And I I think we should honor that.
56:39It's it's not.
56:40It's not that everyone posting online
56:42should be aware that this could happen,
56:44but I think we should honor the idea that
56:47unless they invite us into those spaces,
56:49they're not expecting us to
56:51be in those spaces.
56:53Thank you someone, just very quickly.
56:56Karen, if you could help us
56:57with this on the chat side,
56:58someone who just asked again
57:00for the CME code to text on.
57:02If you have the number that folks should
57:05text it to in order to get CME credit
57:08just to remind you another question.
57:10Related to privacy you had,
57:12you had spoken about the child's
57:15right to privacy and parents
57:17a tendency to tend parents.
57:20Tendency to share overshare information.
57:21And, of course,
57:23this problem predates this problem.
57:25Predates social media parents
57:27tendency to overshare their
57:29children private information,
57:30but what practical advice can you
57:33give physicians that they might
57:35share with parents to help them
57:37understand about the child's
57:39right to a need for privacy?
57:41Yeah, I think it's something
57:43that in in our study,
57:44a lot of parents just haven't thought
57:46about it and and partly that's
57:48specific to the serious illness
57:50context that people were focused
57:52on getting enough support to get
57:54through today and from some of them
57:56they were not at all sure that their
57:59children would live to be adults,
58:01so that was less of a concern,
58:03but a lot of them just.
58:04Their children had good prognosis,
58:06they just hadn't really thought about
58:08it because they were so focused on now
58:10and so just the idea that we should
58:12be talking through with parents,
58:14and it doesn't necessarily
58:15mean that it's the physician.
58:16It might be a member of
58:18the psychosocial team,
58:19someone else in a outpatient clinic.
58:22It might be part of anticipatory
58:25guidance for general pediatricians,
58:26but just what are you putting on line?
58:28Are you thinking about how this
58:30might affect your child's future?
58:32What will happen when they go
58:33to apply to college or get it?
58:34Job and someone Google's them,
58:36which we know admissions officers
58:38are doing and spite in spite of my
58:41feelings on people's privacy and
58:42not searching out those things.
58:44We know admissions officers are doing it.
58:46Do you think it might hurt your
58:48child for that medical information
58:50to be readily accessible?
58:52We think about that all the time.
58:53With privacy around disability and genetics,
58:56but I don't think parents are thinking
58:58about it unless we bring it up and
58:59talk it through with them in that way.
59:01And I think that's why I think
59:03it's important that we do.
59:04I would ultimately, if I was.
59:06Advocating or had more time
59:08to advocate legislatively?
59:09I think there should be some legal
59:11protections for kids about the amount of
59:14information that parents can put online,
59:16but until we have that,
59:17I think the best we can do is educate
59:19families and hope that they'll
59:21weigh the benefits to themselves,
59:23which they're.
59:23They're a real psychosocial benefits there,
59:25but hopefully they can weigh
59:27those benefits against the future
59:28risks for their kids.
59:30You know it's so much that this will
59:32put me and it's so much a part of what
59:34we do is is to try and help parents.
59:37Take the Longview and this is
59:39really what it's about is it?
59:40Is that I seek some reassurance
59:42about today but take the wrong take.
59:44The Longview about that picture or about
59:46that thing you write about your child.
59:48But someday that kid is going
59:49to have to face his friends and
59:51his friends all knowing this or
59:53that about his medical history,
59:54that he might not want people to
59:56know or his future employers,
59:57or anybody else you know.
60:00That that taking the Longview
01:00:01that's that's part of our job,
01:00:03hopefully supposedly not always easy,
01:00:05particularly when parents are in a crisis,
01:00:07understandably.
01:00:07Uhm, some other questions here.
01:00:10What is the best course of action?
01:00:12If a patient goes onto a social
01:00:15media platform and attacks a
01:00:17doctor or medical practice,
01:00:18what's the best course
01:00:20of action in that case?
01:00:22Yeah,
01:00:22uh, it depends a little bit on the details,
01:00:27so the individual attack from one patient
01:00:31is probably something that is best ignored.
01:00:34So like on on Yelp and some of
01:00:37these other websites where every
01:00:39everybody gets negative reviews,
01:00:41there's sometimes really quite hostile.
01:00:44And I had several years ago.
01:00:46Dunno, very informal study of physicians on
01:00:48Facebook and ask them how they respond and.
01:00:51Lots of people.
01:00:52I'm not necessarily not really
01:00:53endorsing this, but lots of people get.
01:00:56They sold this it better reviews.
01:00:58So their response to that is to ask patients
01:01:00that they have a good rapport with two.
01:01:02Hey, please give me a
01:01:03review which I think is OK,
01:01:05but then some of them had friends and
01:01:07family posting fake reviews which.
01:01:09Little bit less OK.
01:01:12So that's one for the individual attack,
01:01:14I think where it's on a much larger scale
01:01:17like these conflicts that go viral.
01:01:19Those are the ones where we really
01:01:22need a nuanced and coordinated.
01:01:24And really I think there were Brianna
01:01:26more uses a sophisticated organizational
01:01:27response of the kind that a lot of
01:01:30hospitals have not been very good at,
01:01:33or the response at the hospital
01:01:35level or the practice level has
01:01:37generally been to ignore disengaged.
01:01:39And I say we cannot comment.
01:01:42Matt,
01:01:42and in that I cannot comment on
01:01:45that space leaves a lot of room for
01:01:48the bad information for the attack.
01:01:50For the misinformation to continue to spread.
01:01:53So I do think it's important with
01:01:55those conflicts that while respecting
01:01:57the patients confidentiality,
01:01:59we do what we can to educate people
01:02:02and to engage within our local
01:02:04community to try to engage our local
01:02:06communities in those conversations
01:02:08and ultimately to make it all
01:02:10learning experience for everyone.
01:02:12Just letting.
01:02:14I think sometimes we fall back on.
01:02:16We can't say anything when it's not
01:02:18really true that we can't say anything.
01:02:20We may not be able to comment on
01:02:22the specific details of the patient
01:02:24involved in whatever was posted,
01:02:27but we might be able to say
01:02:28something generally about hey.
01:02:30How do we approach cases like
01:02:31those in general,
01:02:32or why do we approach those?
01:02:33Or if it's somebody who's just
01:02:35really angry about the current
01:02:37weights in our pediatric Ed like
01:02:39we were talking about earlier?
01:02:40Educating our community about
01:02:42what's going on with COVID and
01:02:43why those weights exist.
01:02:44All of those are important things to do.
01:02:49Thank you very much.
01:02:52That takes care of the questions
01:02:54I want to then offer you Amy.
01:02:56Any final words you want to share with us?
01:02:58This is, this has been really helpful
01:03:00both in terms of framing the problem.
01:03:03The way you categorize the various ways
01:03:05that this can hurt us and importantly,
01:03:07the various ways we can make
01:03:09it better or make it worse.
01:03:10And you know, in some of those
01:03:12responses where we could make it worse,
01:03:14I'm thinking, yeah,
01:03:15I've seen that done I've I've
01:03:16heard that done, you know,
01:03:17I I I'm familiar with that because of course,
01:03:19the physicians and nurses that are.
01:03:22The the recipients of sometimes the bad
01:03:25press on Facebook certainly are human
01:03:27beings and and take that personally.
01:03:28But there's still ways to make it better,
01:03:30even not just for our patients
01:03:31and their parents,
01:03:32but for ourselves and how we respond to that.
01:03:34So I think that's some of this stuff was
01:03:36really insightful and and very helpful.
01:03:38And and try and you know the the
01:03:40Internet can help us or hurt us in so
01:03:43many different ways and and social media
01:03:45can just the Internet before social
01:03:46media was a thing and I can recall
01:03:49talking to talking to parents and saying,
01:03:51well, you know in this situation this.
01:03:52Because of my clinical gig,
01:03:55I'm talking to parents who are expecting
01:03:57a child who's going to be critically
01:03:58ill and I said well in situations like this.
01:04:00You know, some people say such and such,
01:04:02and they say, yeah,
01:04:03but you've said such and such,
01:04:04and I think I don't
01:04:05remember telling you that.
01:04:06And they said, well,
01:04:06yeah, we read it.
01:04:07You know yesterday and of course,
01:04:09so everything any of us have ever
01:04:10written is out there for parents who
01:04:11want to have the energy to look for it,
01:04:13and the savvy to look for it.
01:04:16And of course,
01:04:16social media is made this so much easier.
01:04:18So the same folks who might not
01:04:20be able to access the article that
01:04:21you wrote in Journal of Pediatrics.
01:04:23May nevertheless be able to access the
01:04:25opinion of someone who posted something
01:04:27on Facebook or in a support group,
01:04:29so it's actually made it easier to find
01:04:31the things that might be less helpful.
01:04:33But in fairness,
01:04:34it's entirely possible that
01:04:35someone discovers something in
01:04:36one of these social media sites.
01:04:38That's important that that error that was
01:04:40made by us that someone else picks up,
01:04:44so we shouldn't discount the
01:04:45possibility that it could help somebody,
01:04:47but we all kind of live in fear
01:04:49of the harm it can do,
01:04:51and the disinformation that
01:04:52can be that can be spread.
01:04:53This has been really helpful,
01:04:55so that's enough of me talking.
01:04:57I want to see come now let me just
01:04:59say actually before we sign off,
01:05:01I do in fact have another comment
01:05:04here by a friend who says that
01:05:07language rights are civil rights
01:05:09and made clear in the Civil
01:05:11Rights Act 64 and EO 13166.
01:05:13I wonder how the language barriers
01:05:15and cultural issues between parents
01:05:17and the dominant culture and
01:05:19children who tend to embrace this
01:05:22culture and parents can be resolved.
01:05:24Should I read that one more time?
01:05:27I wonder how the language barriers and
01:05:29the cultural issues between parents
01:05:31and the dominant culture and children
01:05:33who tend to embrace this culture
01:05:35and parents that can be resolved.
01:05:38Yeah, that it's intra.
01:05:40It's interesting in the in
01:05:41the setting of social media,
01:05:43because in some ways it's.
01:05:46I don't subscribe fully to
01:05:48generational differences,
01:05:48but it is generational as much as cultural.
01:05:51And when I we we have a partnership
01:05:53with Kenya with the Children's
01:05:55Hospital in Kenya and before
01:05:56COVID I was able to spend a month
01:05:58a year there and I asked them
01:06:00these questions and they had much
01:06:03the culturally a very different
01:06:05approach to treatment disagreements.
01:06:08Very, very different system
01:06:10in terms of what happens.
01:06:12If a parent refuses, but also,
01:06:14how often does a parent reviews
01:06:15most of the time.
01:06:16They do whatever the doctor says,
01:06:18but at the same time everyone
01:06:20still had the experience of parents
01:06:22checking social media and asking about
01:06:25things they found on social media.
01:06:27It was something that has really
01:06:29started to transcend the world
01:06:31and be part of global culture.
01:06:33And so I don't know that that's
01:06:34an answer to that.
01:06:35Just that I think when I
01:06:37think about social media,
01:06:38I'm surprised that there aren't
01:06:40more cultural differences.
01:06:42I think in some way it's it's a
01:06:44phenomenon that is overtaking
01:06:46the entire world.
01:06:47Even as it plays out a little
01:06:49bit differently in different
01:06:50cultural scenarios situations.
01:06:53Thank you. Any final thoughts for Sammy?
01:06:57I think my my final thought is just engaged.
01:07:00I think we as a profession in
01:07:02healthcare have put off engaging with
01:07:04social media for too long and I think
01:07:06we've we've left that vacuum for
01:07:08misinformation like we were discussing.
01:07:10So a take home point with everyone
01:07:13would be to to try engaging if you're
01:07:15not already with social media and and
01:07:17figure out how to do that effectively,
01:07:19how to have those conversations.
01:07:22Very good thank you, thank you so very
01:07:25much for this excellent talk and I
01:07:27want to thank everyone who joined us
01:07:29tonight and we look forward to seeing
01:07:30you folks again in a couple weeks.
01:07:32You can find the schedule
01:07:34biomedical ethics at yale.edu,
01:07:35but for tonight we had a terrific
01:07:37conversation and learned a great deal.
01:07:39And for that we thank
01:07:40Doctor Amy Caruso Brown.
01:07:41We hope to have you back sometime
01:07:43and hope to have you back in
01:07:45person because there's a.
01:07:46There's some good.
01:07:47There's some good food to be had in
01:07:48New Haven and we'd like to meet you
01:07:49and get a chance to share it with you.
01:07:51That would be great. I would love that.
01:07:53Have a wonderful night everyone goodnight.