Family-Pediatrician Disagreements in the Age of Social Media

Transcript

• 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.