Considerations for Health Information Sharing in Pediatrics in the Era of the 21st Century Cures Act

Transcript

• 00:00Good evening and welcome to this
• 00:03presentation sponsored by the
• 00:05Yale Pediatric Ethics Program.
• 00:08We have a terrific program for
• 00:09you tonight and I wanna lay
• 00:11out the plan for the evening.
• 00:12Doctor Natalie Paessler is our guest
• 00:14and she'll be joining us in just
• 00:17a moment with her presentation.
• 00:18I would like to let you know that this
• 00:21program tonight will go as always from
• 00:235:00 PM till two 6:30 PM Eastern Time.
• 00:26Doctor Paisley will speak
• 00:27for about 45 minutes,
• 00:28give or take a bit and after that we'll
• 00:31have a conversation as best we can.
• 00:33And then in the zoom world.
• 00:34I invite you to send your comments
• 00:37or questions through through the Q
• 00:38and a portion of the zoom function
• 00:40and then I will read the questions
• 00:42to doctor Paessler and we'll we'll
• 00:44have a conversation from there.
• 00:46We will have a hard stop.
• 00:47As always at 6:30.
• 00:48So I apologize in advance if I don't
• 00:51get to your question or comment.
• 00:53We have a couple of other programs
• 00:54I want to mention to you that
• 00:56are coming up soon.
• 00:57Professor Keith Whaley was going
• 00:59to talk about pain politics.
• 01:00This is going to be a very interesting
• 01:03conversation that's going to happen
• 01:04on the 19th of January and our next
• 01:06seminar on the afternoon of the 26th.
• 01:07We have a very special program.
• 01:09We have the the program for
• 01:12biomedical ethics has the Yale
• 01:14Symposium on Holocaust and Genocide,
• 01:16and we have speakers from around the world.
• 01:18Time to speak on a Holocaust and genocide,
• 01:21not just the Nazi era,
• 01:22but other aspects of Holocaust and genocide.
• 01:25It should be really an extraordinary
• 01:27program with some wonderful scholars and
• 01:29you can find information about that on
• 01:31our website at biomedical ethics at Yale.
• 01:33And of course,
• 01:34you can always reach out to Karen Kolb
• 01:36or myself up for information on this,
• 01:38but we look forward to seeing you
• 01:40at one or both of those events.
• 01:42The this symposium,
• 01:43which is supported by the Lindenthal family,
• 01:45is a pretty big event for
• 01:47our program and for the.
• 01:49University, but let's talk about tonight.
• 01:52Tonight we have a problem that's
• 01:55going to be addressed by an expert,
• 01:56and so I think that we're interested
• 01:58both in ethical considerations as
• 02:00well as practical considerations,
• 02:02and we're very fortunate that
• 02:05that our friend, Bonnie Kaplan,
• 02:07is very tuned into the world of Informatics,
• 02:10told us that we have to get
• 02:11Doctor Pager here if we can,
• 02:12and we were very fortunate that Doctor
• 02:15Natalie Pager accepted our invitation.
• 02:16She's a board certified pediatric
• 02:18intensivist and one of the first.
• 02:20Board certified clinical in pharmacists.
• 02:23She's a clinical professor of
• 02:24pediatric critical care at Stanford
• 02:26University School of Medicine.
• 02:27She also serves as the chief
• 02:29Medical Information Officer
• 02:30at Stanford Children's Health.
• 02:32Excuse me where she helped lead
• 02:34the organization to an HIMS level
• 02:377 EMR and analytics adoption,
• 02:39as well as an HIMSS Davies
• 02:41Award of Excellence.
• 02:43Dr Pager holds a Masters
• 02:44degree in medical education and
• 02:46focused her thesis on the impact of
• 02:49computerized clinical decision support tools.
• 02:51On clinicians knowledge,
• 02:52behaviors, and attitude,
• 02:54Doctor Paylor has also been active in
• 02:56shaping the curriculum for the emerging
• 02:59specialty of clinical informatics.
• 03:00She's the program director and Co.
• 03:02Founder of the Stanford Clinical
• 03:04Informatics Fellowship and one of the
• 03:06first AC GME accredited fellowships in
• 03:09Clinical informatics, and she chairs,
• 03:11the national Community of Clinical
• 03:13Informatics program directors.
• 03:14She's clearly a national
• 03:15leader in this field,
• 03:17and we're very fortunate to have
• 03:18some time with her this evening.
• 03:20Thank you so much for joining us Natalie.
• 03:22Natalie went to college or University
• 03:23of Arizona and ever since then
• 03:25seemed to have settled in Stanford
• 03:27and just climbed up the chain.
• 03:28There has accomplished many great
• 03:30things and no doubt many more.
• 03:31We're honored to have you here
• 03:33with us this evening for the
• 03:34Yale Pediatric Ethics program.
• 03:35And with that I will happily turn
• 03:37the program over to Doctor Paisley.
• 03:39Natalie saw yours.
• 03:41Thank
• 03:41you so much Doctor Macario for
• 03:43the wonderful introduction,
• 03:44and it is my pleasure to
• 03:45be able to speak with you,
• 03:46and I will just put out the
• 03:48disclaimer from the beginning, I think.
• 03:50Unfortunately, I'm bringing much,
• 03:51many more questions than answers
• 03:52and very much looking forward to
• 03:54the conversation at the end of this
• 03:56talk I have had the great fortune to
• 03:59work with a large number of amazing
• 04:03leaders and thought and thoughtful
• 04:06in pharmacist and pediatricians and
• 04:09policymakers across the nation it.
• 04:11Really trying to tackle some
• 04:13of these issues tonight.
• 04:14I'm going to try to focus more on
• 04:17the kind of broader challenges and
• 04:19policy questions and and bigger
• 04:22picture issues and stay less
• 04:24focused on the technical pieces,
• 04:26but you'll see some of our
• 04:29technical work work sleeping in.
• 04:31I am also, as Mark mentioned,
• 04:35the program director for the
• 04:37Clinical Informatics Fellowship.
• 04:38We have a we have an incredible
• 04:41adolescent and pediatric informatics
• 04:42group at Stanford Children's
• 04:44Health and a fabulous fellowship
• 04:46with truly outstanding fellows.
• 04:48So I'll be highlighting a lot of the
• 04:50work that they are doing along these lines,
• 04:52and if there's any questions
• 04:54about platics training,
• 04:55please feel free to reach out to me.
• 04:57Unfortunately for me,
• 04:58no interesting disclosures to make.
• 05:01The learning objectives.
• 05:02Tonight I will be talking about
• 05:03first kind of establishing some
• 05:05of the positive implications of
• 05:06the 21st Century Cures Act and
• 05:07telling me what that is.
• 05:09If you don't already know,
• 05:10then talking specifically about
• 05:12the challenges and and require
• 05:13work that's need to be that needs
• 05:15to be done around adolescent
• 05:17sensitive health information.
• 05:19Then going on to some of the specific
• 05:22challenges around the mothers of
• 05:24pediatric patients and finally at
• 05:26the end I will touch on some of the
• 05:30questions around how to protect.
• 05:31Pediatric data through kind of
• 05:34broader information sharing in health
• 05:36apps and things along those lines.
• 05:39So just for background,
• 05:41hopefully everybody is aware
• 05:42of the karzak by now,
• 05:44but just in case so so the Cures
• 05:46Act the 21st Century Cures Act
• 05:49really is an extension of HIPAA,
• 05:51so since the age of HIPAA,
• 05:53you know 30 years ago.
• 05:56Sweet patients have had the right to inspect,
• 05:59review and receive copy
• 06:00of their medical records.
• 06:01Many people still don't realize that many
• 06:03patients don't realize that many providers,
• 06:05I think,
• 06:05didn't realize that until it
• 06:07became kind of more visible,
• 06:08but HIPAA really is is what established
• 06:10that that patients really do have a
• 06:13right to their own medical records.
• 06:14In 2016,
• 06:15at the end of his term,
• 06:18President Obama signed into law
• 06:20the 21st Century Cures Act,
• 06:22which was stated to focus on
• 06:25expediting discovery,
• 06:26delivery and development of new cures
• 06:28and treatments and define this term of
• 06:31interoperability and information blocking,
• 06:33which I'll talk a little bit
• 06:35more in a minute.
• 06:36In March, March 9th.
• 06:38To be exact of 2020,
• 06:40the final rule of the 21st Century Cures Act.
• 06:44Was was announced was
• 06:46released and as all of you
• 06:47no doubt remember, there were a few
• 06:50other things going on at that time and
• 06:52COVID pretty much took center stage
• 06:55and nobody really noticed right away.
• 06:57The specific details of of this final
• 06:59rule except for those of us who
• 07:01have been waiting for it patiently.
• 07:03And then in April of last year or
• 07:06the final rule finally took place,
• 07:09implementing the first pieces of
• 07:13prohibition of information blocking.
• 07:15So what is information blocking
• 07:17according to the the final rule,
• 07:19it is a practice that accepts,
• 07:20as required by law,
• 07:22or covered by an exception,
• 07:24is likely to interfere with access, exchange,
• 07:26or use of electronic health information.
• 07:30And who is subject to it?
• 07:32Well, us as healthcare providers health
• 07:34IT developers of certified health.
• 07:36IT like your large.
• 07:38Each PHR vendors like Epic and Cerner
• 07:40and then health information networks
• 07:43and health information exchanges.
• 07:46For the first part of the final rule,
• 07:48and that went live in April 2021,
• 07:50the information that was included
• 07:53in information blocking was the
• 07:55list that you see here.
• 07:56It's still fairly broad,
• 07:58so it includes your most notes,
• 08:01allergies, problems, medications,
• 08:04labs, immunizations, vital signs,
• 08:07fairly broad,
• 08:09but doesn't include everything that might
• 08:11be in the medical record as of next October,
• 08:14October 22.
• 08:15Information and blocking is supposed
• 08:17to be expanded to all electronic
• 08:20health information and all of us in
• 08:22the community are quickly trying to
• 08:25understand exactly what that means,
• 08:27so more to come on that front.
• 08:30I'll just note real quick that
• 08:32even though this this rule went
• 08:35into effect in April of last year,
• 08:37there really hasn't been
• 08:40enforcement defined for providers.
• 08:42So so enforcement of the regulation
• 08:45depends on whether you're talking about.
• 08:49Whether you're talking about a which
• 08:51kind of actor you're talking about at
• 08:53large vendor versus individual providers,
• 08:55and there's future rulemaking
• 08:57that's supposed to establish the
• 08:58disincentives for providers,
• 09:00so still a lot more to come on.
• 09:01How this rule is enforced,
• 09:03and I, I really think about this,
• 09:04you know, like Hippo,
• 09:05like Hippo was passed back in 1996,
• 09:07and we have been trying to sort out
• 09:11the details for the last several
• 09:12decades since and have understood
• 09:14more and more what it means and
• 09:16how it will be enforced.
• 09:17And I expect the 21st Century Cures
• 09:19Act to be the same way, well.
• 09:21Where we will be sorting out the
• 09:23details and seeing how it's seeing how
• 09:24it's enforced over the next several decades.
• 09:28What does this mean for
• 09:30patients and families though?
• 09:31And and I think there are some really
• 09:35positive steps forward and some real
• 09:38potential for empowering engaging
• 09:39families with many of the stipulations
• 09:42of the of the 21st Century Cures Act.
• 09:44So the open notes movement.
• 09:46If you aren't familiar with it,
• 09:48definitely recommend checking
• 09:50out their website.
• 09:51They have been pushing again
• 09:53for several decades to increase
• 09:55information sharing with patients to
• 09:57share clinical notes with patients
• 09:59and their families.
• 10:00As a way of promoting transparent
• 10:03communication,
• 10:03engaging patients and their families,
• 10:05and really empowering them to
• 10:06take care of their own health.
• 10:08And they have tons of
• 10:10information on their website.
• 10:12There have been multiple studies
• 10:13that have been done on open notes.
• 10:16Tom del del Banco is really
• 10:18just an international leader
• 10:20on this movement and has helped
• 10:22spur lots of lots of research.
• 10:27But there hadn't been a whole lot
• 10:29of information or a whole lot of
• 10:31information or research about how
• 10:32to to do this in Pediatrics so.
• 10:36Several years ago,
• 10:37our organization tried to start
• 10:39rolling this out in Pediatrics and to
• 10:41try to start getting some information
• 10:43about what this might mean and how
• 10:45you might do this in Pediatrics.
• 10:47So Chaffin, who's pictured here
• 10:48is one of our clinical traumatics
• 10:50fellows from several years ago,
• 10:51and he's now leading national
• 10:53efforts to continue this work,
• 10:56but he helped write a perspective for
• 10:59saying why we really should think
• 11:02about open notice for Pediatrics and
• 11:04what the specific advantage were.
• 11:06Advantages are for Pediatrics,
• 11:08and so you know one notable aspect
• 11:11of Pediatrics is that we often
• 11:13have multiple caretakers taking
• 11:15care of the same patient.
• 11:16So a mother or father,
• 11:17grandparents, teachers,
• 11:18caregiver,
• 11:18whoever may be in charge of taking
• 11:21care of that patient needs to
• 11:22know what's going on with their
• 11:24their medical care and how to give
• 11:26them their medications or how to.
• 11:28Or you know how to treat whatever
• 11:31whatever medical condition they have,
• 11:32and so sharing clinical notes may be
• 11:34one way to help multiple caretakers.
• 11:36Stay on top. Stay on the same page.
• 11:40Also,
• 11:41for for children you know complex
• 11:44children who are being cared for by
• 11:48multiple different subspecialists in
• 11:50addition to their primary pediatrician.
• 11:52The open notes movement and and
• 11:54sharing of clinical notes may help
• 11:57the family coordinate all those
• 11:59multiple different clinicians.
• 12:01And then finally he spoke specifically
• 12:04about how this may be part of the.
• 12:08Part of the process to help adolescents
• 12:11learn their medical history and
• 12:14start taking on their own care as
• 12:16they transition into adulthood.
• 12:21So we rolled out.
• 12:23We rolled out open notes for several
• 12:26of our pediatric subspecialties
• 12:28and then and then did a survey of
• 12:32our of our patients who received
• 12:34these open notes and what we did
• 12:36was was copy a survey that had
• 12:39been done in the adult literature,
• 12:40and there's several limitations
• 12:41to this survey. It was, you know,
• 12:43we did it as a convenience sample.
• 12:45We and it was a relatively small sample,
• 12:48but what I think was encouraging was
• 12:50that we saw the same general patterns
• 12:52that they had seen in this very large.
• 12:54Adult randomized study.
• 12:57And So what we saw was that patients
• 13:00and families generally thought
• 13:02that the notes were accurate,
• 13:03that they thought that the notes
• 13:05were either very easy or somewhat
• 13:07easy to understand in most cases,
• 13:09and that's that's important because
• 13:10a lot of people thought that
• 13:11when you started sharing clinical
• 13:13notes with patients and families,
• 13:14they wouldn't understand the medical jargon.
• 13:18They felt that generally reading the
• 13:20notes either made them feel better
• 13:23or the same about their child doctor
• 13:25and a small but significant number
• 13:27did contact the child doctor about
• 13:30something they read in their notes,
• 13:32and that's important one because it
• 13:34it suggests that there is potential
• 13:37to help clarify the communication
• 13:39between the provider and the
• 13:42family and potential to correct
• 13:44any misstatements in the notes.
• 13:47But it also has significant implications.
• 13:49Or increased burden on providers
• 13:51as they have to now answer
• 13:53these additional inquiries.
• 13:54So I think interesting implications
• 13:57on either side of of that coin.
• 14:00But what I think was kind of most
• 14:03compelling was some of the mess.
• 14:05Some of the free text responses that
• 14:06we got from patients and families.
• 14:08And this is one example that I
• 14:09think was particularly poignant.
• 14:10Just going to read it.
• 14:11'cause this parent does a much
• 14:13better job speaking to this than
• 14:14I could open notes are amazing.
• 14:16I wish all my son specialists did this.
• 14:18It has allowed his primary care
• 14:19physician to understand his case better.
• 14:21Allowed me to print out neurology reports
• 14:23for his school for IEP testing purposes,
• 14:26and refer back to our
• 14:27previous care decisions,
• 14:28which change often with a
• 14:30medically complicated child.
• 14:31Honestly,
• 14:32my son's disorder is so rare and complicated,
• 14:35we are often the experts educating
• 14:37other doctors and so having access
• 14:39to everything makes it far easier
• 14:41for me to provide the full context
• 14:43to each new physician we meet.
• 14:44And there are a lot of them.
• 14:46I really wish that more doctors
• 14:48use these open notes,
• 14:50and of course this was before the
• 14:51Cures Act and so now doctors across
• 14:53the nation are using open notes
• 14:55or sharing their clinical notes
• 14:57because there is this mandate.
• 14:59But I think this really speaks
• 15:01to the potential.
• 15:01For open notes to help create transparency,
• 15:05help empower patient patients and
• 15:09families to really take optimal
• 15:13care of their medical needs.
• 15:16There are exceptions to the information
• 15:18blocking provisions that are
• 15:20included in the Cures Act.
• 15:21The two that come up most relevantly
• 15:23for providers in particular are
• 15:25the preventing harm exception
• 15:27and the privacy exception.
• 15:28The preventing harm exception says
• 15:31that if providers believe that
• 15:33there is an imminent risk of harm
• 15:36to the patient or someone else by
• 15:39that note being released to them,
• 15:40then the note can be withheld.
• 15:42The privacy exception says that
• 15:44if the patient says they don't
• 15:45want their nose really.
• 15:46Note released electronically for any reason.
• 15:48Then it can be withheld.
• 15:50The rest of these are a little
• 15:52bit kind of more systemic.
• 15:54The systemic level,
• 15:56the two that I'll point out,
• 15:57is the feasibility exception and
• 15:59the content and manner exception,
• 16:01and we'll talk a little bit more about those.
• 16:03But basically it says if it is infeasible
• 16:05to electronically share our information,
• 16:07health information in the
• 16:09way that the patients want,
• 16:11then you may suggest an alternate
• 16:13content and manner to release it.
• 16:15And So what that often
• 16:16means is going back to our.
• 16:18More traditional release of records
• 16:19through the medical records process,
• 16:21which may be PDF form or paper format
• 16:23or something like along those lines
• 16:26and that becomes very important when
• 16:27we look at Pediatrics and some of the
• 16:30challenges of separating out information.
• 16:32I'll just mention briefly,
• 16:33child abuse and neglect as one of the
• 16:37areas that is frequently raised as an
• 16:40area of concern with release of notes.
• 16:43I think that there are pretty
• 16:45clear protections for this.
• 16:46There you'll hear you'll
• 16:47hear debate back and forth,
• 16:49and there are definitely lots
• 16:50of people talking about this,
• 16:52and I and I think it does
• 16:53take a certain nuance.
• 16:54And again,
• 16:56this is where it will be interesting
• 16:58to see how the Cures Act is enforced
• 17:01and and if these issues bear out.
• 17:03But there is the preventing harm exception,
• 17:05so if a provider thinks that that
• 17:08releasing the information to the parent,
• 17:10could you know lead to
• 17:11further abuse or neglect?
• 17:13And then they can withhold the note
• 17:15because they're trying to prevent harm.
• 17:17There is also definitions in both
• 17:19HIPAA and in in the Cures Act
• 17:21that say that electronic health
• 17:23information does not include
• 17:24information compiled and reasonable
• 17:26anticipation of or for use in a civil,
• 17:29criminal or administrative
• 17:29action or proceeding.
• 17:30So if it's information that is
• 17:32specifically that you think is
• 17:33going to be used in a court case,
• 17:35you know around child abuse and
• 17:38neglect that can be withheld.
• 17:41But again, as I mentioned at the beginning,
• 17:44Hip a really established patients
• 17:46rights to their medical record and
• 17:49so many of these issues are not new,
• 17:52it's just that they are it.
• 17:53They're much more apparent because
• 17:55now information is being kind
• 17:57of pushed out electronically
• 17:58or much more easily available.
• 18:00But these issues have existed
• 18:01since the time of HIPAA,
• 18:03so I so I,
• 18:03you know,
• 18:04really suggest that everybody
• 18:05works with their compliance and
• 18:07health information management
• 18:09departments to understand.
• 18:11There are protections
• 18:13about around this document
• 18:15documentation and make sure that.
• 18:18Be that that they have adapted
• 18:21their their procedures for
• 18:23the exchange of electronic
• 18:25information in a similar manner.
• 18:30But what I'm gonna spend a big chunk of time
• 18:34talking about is adolescent confidentiality.
• 18:38Because this is a very kind of tricky area
• 18:41that I think has significant implications
• 18:45for adolescents and young adults as they
• 18:49as they transition their care and again,
• 18:52all of these issues you know theoretically
• 18:54existed since the time of HIPAA,
• 18:56but they've just become magnified with
• 18:59with the new provisions of the jurors act.
• 19:02So HIPAA says that as it applies to minors.
• 19:07Legal guardians usually have a
• 19:08right to the medical records for
• 19:10their children under the age of 18,
• 19:12with three major exceptions,
• 19:13one is when the minor obtains care
• 19:16at the direction of the court.
• 19:17Two is when the parents you know agrees
• 19:19that the clinician in minor may have a
• 19:22confidential relationship and three is
• 19:24when the minor has consented for the
• 19:25care and consent of the parent is not
• 19:28required by state or other applicable law,
• 19:30and it's that third one that
• 19:34gets really tricky because.
• 19:36There are 51 different sets of state
• 19:39laws around adolescent consent to care,
• 19:42and this this variation across our
• 19:45country makes it incredibly challenging
• 19:48to figure out how to how to apply
• 19:51HIPAA and the Cures Act.
• 19:53So when you look across all you know,
• 19:55all 50 States and the District of Columbia.
• 19:59All all States and and DC have some.
• 20:03Version of adolescent consent laws.
• 20:06All of them have some some
• 20:09stipulation around STI care,
• 20:11sexually transmitted infection care,
• 20:12but from there it varies incredibly,
• 20:15and I'll say that I'm going to show it
• 20:17a little bit more detail in a minute.
• 20:19I'm I'm fairly lucky.
• 20:20I feel to live in the state of
• 20:22California where we have very robust
• 20:25adolescent consent laws,
• 20:26but it is incredibly variable and this
• 20:28is one of the areas where I really
• 20:31feel like pediatricians and physicians.
• 20:34And and and advocates for children and
• 20:37adolescents really need to continue to
• 20:40work with with state lawmakers so that
• 20:43we can get some type of consistency.
• 20:46Because as you'll see in a minute
• 20:49becomes almost impossible to meet
• 20:51the varying sets of laws.
• 20:54So why is adolescent privacy important?
• 20:58There are, there's a lot of different data
• 21:01out there on the effects of adolescents,
• 21:03assurances of confidentiality,
• 21:04and how that affects adolescent care.
• 21:07And basically, if adolescents don't
• 21:10aren't assured of confidentiality,
• 21:12they may share fewer numbers of
• 21:15problems during an encounter.
• 21:17They may forego,
• 21:18forgo getting care at all because of
• 21:21concern that their parents may find out.
• 21:23There's also the theoretical risk of,
• 21:26or sometimes real risk of
• 21:27corrosion that a parent may.
• 21:29For such an adolescent to consent to
• 21:32care that they should have a right to,
• 21:35in a way that they that they
• 21:37would not otherwise choose to,
• 21:39and then concerns around abuse and neglect.
• 21:40And there are a few rare cases
• 21:42where an adolescent is,
• 21:43you know,
• 21:44is abused or kicked out of their house
• 21:46because of something that their parent
• 21:48bangs out related to their medical care.
• 21:52So with adolescents, we're left with
• 21:54this balance of you know there all the
• 21:56things that we talked about with the how,
• 21:59how sharing of health information
• 22:00can empower the patient,
• 22:02the family, those still hold true,
• 22:04especially for our, you know,
• 22:07adolescents with complex medical
• 22:08issues and and and in most cases.
• 22:11Thankfully, you know,
• 22:12having the family involved and
• 22:13hearing most of the information is
• 22:15going to be better for helping that
• 22:17adolescent manage their their medical
• 22:20care and transition into adulthood.
• 22:22But really,
• 22:23trying to balance that with ensuring
• 22:25that where it's necessary we have
• 22:27confidential adolescent treatment
• 22:29so that adolescents will seek
• 22:31out the care that they need and
• 22:32prevent very serious long term
• 22:34consequences of not getting that care.
• 22:39So as I mentioned in California,
• 22:41where I feel very lucky honestly to
• 22:43have such robust minor consent laws,
• 22:45and so we have consent laws that protect
• 22:49an adolescence ability to consent and
• 22:51therefore have privacy around birth control,
• 22:54pregnancy, abortion,
• 22:55sexually transmitted infections,
• 22:57HIV testing, sexual assault,
• 22:58care, alcohol, drug counseling,
• 23:00and mental health treatment.
• 23:02There's a few kind of stipulations
• 23:03and and minor exceptions there,
• 23:05but for the most part,
• 23:06adolescents have the right
• 23:07to consent to that care.
• 23:09And therefore again have a right
• 23:12to confidentiality around that
• 23:13part of their medical record.
• 23:16So, given HIPAA and the Cures Act
• 23:18and then our and then our robust,
• 23:21you know California adolescent consent laws.
• 23:24How do we figure out information
• 23:25sharing and who do we share
• 23:27information with electronically?
• 23:29Do we share it with the team?
• 23:29Do we share it with the parent?
• 23:31Gets really complicated really quickly.
• 23:34And again, there are lots of amazing,
• 23:36wonderful people working on
• 23:37this across the country.
• 23:38And if there's a there is a
• 23:40ton more work to go on to go.
• 23:42Like I said, unfortunately,
• 23:43I'm going to be raising more
• 23:44questions than answers today.
• 23:45But we have been partnering with
• 23:47the American Academy of Pediatrics,
• 23:48Children Health Association
• 23:49Society for Adolescent Health,
• 23:51the American Medical Informatics Association.
• 23:53We have a CMIO for kids,
• 23:54Lister with all the pediatric
• 23:57informatics across the nation.
• 23:59Epic.
• 23:59We are an epic sites open partnering
• 24:02with epic Azari HR vendor.
• 24:04They have several steering boards
• 24:06and and development teams.
• 24:08And then there's also this national
• 24:10movement called protecting privacy
• 24:11to promote interoperability.
• 24:12P P2P. Super easy to say.
• 24:15But this is a group that is
• 24:18is really looking at the the
• 24:20challenges and the importance of
• 24:22segregating information within the
• 24:24medical record to appropriately
• 24:26protect sensitive information.
• 24:28And one of the use cases they are
• 24:30looking at is this adolescent use case.
• 24:33We also when we you know knew
• 24:35about the Cures Act coming,
• 24:38got a coalition of pediatric infamous
• 24:40across the state of California together
• 24:43to meet on a regular basis to talk about,
• 24:47you know,
• 24:48how do we specifically go forward and
• 24:51implementing the Cures Act in California,
• 24:53and I strongly recommend that
• 24:55that every state do this,
• 24:57especially while we have these incredibly
• 25:00bearing adolescent consent laws,
• 25:02because there are such different.
• 25:04Situations per state that it.
• 25:07I think it's really helpful to have
• 25:09your colleagues across the state work
• 25:11together to figure out how do we.
• 25:13How do we implement?
• 25:14How do we implement this appropriately
• 25:16in the context of our state laws?
• 25:18And again, pictured here?
• 25:19Drew Bedgood is one of our current
• 25:21clinical informatics fellows,
• 25:23pediatric pediatrician,
• 25:24and he really helped lead some of
• 25:27the work to inform this group shape.
• 25:29This group and then do a survey of this
• 25:32group to understand the effects of.
• 25:34Our work together and I'll talk
• 25:35about that in just a minute.
• 25:37So just I'm again.
• 25:38I'm not going to go into some of
• 25:40the technical details or some
• 25:41of the specific
• 25:42work that we have done to to break
• 25:45apart adolescent information,
• 25:46but just highlighting that the
• 25:48protected adolescent information,
• 25:50the sensitive adolescent information
• 25:53about their STI's or their medications,
• 25:56or their pregnancies, any of that can
• 25:58live in multiple different places,
• 25:59so it might be visible on appointments
• 26:02and problem list and medication lists.
• 26:04In lab and radiology studies,
• 26:07question of whether you worry
• 26:09about their immunizations or their
• 26:11allergies to a birth control Med.
• 26:13For example, I'll say we have
• 26:15decided not to worry about that,
• 26:16but that is still a question.
• 26:18Notes obviously contain that
• 26:19information and then billing is
• 26:22often a very hard piece to protect,
• 26:24so you may protect everything
• 26:25else and then if the family gets
• 26:27the bill for the pregnancy test,
• 26:28that could be the the way that
• 26:30they inappropriately get notified
• 26:32of that of that information.
• 26:34Again,
• 26:34luckily in California we have
• 26:36something called the California Family
• 26:38Pact program where we can build
• 26:42medikal for these sensitive tests
• 26:44so we have a way to print bills,
• 26:46but that is often a challenge that
• 26:48comes up in other areas, and so again.
• 26:52This is where we go back to the
• 26:54exceptions of to the Cures Act in that
• 26:57if it is infeasible to separate out
• 26:59the sensitive information and release
• 27:01only the non sensitive information,
• 27:03then you can go to content and manner
• 27:05and so this is what we are still
• 27:07doing for the most part there's a
• 27:08lot more technical work group we have
• 27:10going that I can speak to in more
• 27:11detail for anybody who's interested
• 27:13in the informatics solutions,
• 27:14but for the most part we are still
• 27:16referring a lot of our adolescent
• 27:18information sharing to our medical
• 27:19records team and where we manually
• 27:21redact a lot of information and then
• 27:23give the information to either the team.
• 27:25Or the parent as appropriate.
• 27:28When we surveyed our Group of
• 27:30pediatric informaticists across
• 27:31the state of California,
• 27:33what was interesting is the the blue line.
• 27:36Here is the ideal state and
• 27:38everybody in the group or all the
• 27:40health institutions and involved
• 27:41in the group agreed that the ideal
• 27:43state for information released to
• 27:45the adolescent would be that they
• 27:47get all of the information.
• 27:49But because of technical limitations,
• 27:51you see that there was quite a variety,
• 27:53quite quite a lot of variability in
• 27:55the ultimate solution as of last.
• 27:57April, so some places released all content.
• 27:59If you only a few,
• 28:01several released only non sensitive
• 28:03content and then there's 11 institution
• 28:06that does has no way to ever use
• 28:08any content adolescents and there's
• 28:10lots of lots of nuances within
• 28:12even within those columns.
• 28:15Similarly for information
• 28:16released to the adolescent proxy,
• 28:18so to the parent in most cases everybody
• 28:21agreed that only the non sensitive
• 28:24content should ideally be released
• 28:26to the to the proxy to the parent.
• 28:28But again, because of technical limitations,
• 28:31people had to decide,
• 28:31kind of which,
• 28:32which was the lesser of two evils,
• 28:34and so so. 9 institutions were able to
• 28:37release only non sensitive content,
• 28:40but that star there is that they were not
• 28:42able to release all of the non non sensitive
• 28:44content that they would like to release.
• 28:46Several institutions were were not able
• 28:48to release any content for a variety of
• 28:51technical technical reasons or decisions.
• 28:53Again deciding kind of between the the
• 28:56best option amongst not so great. Options.
• 29:01And then just one other one
• 29:03other piece to highlight,
• 29:05which I think has some super
• 29:08interesting implications.
• 29:09We did some work and we do have
• 29:11it so we have an adolescent teen
• 29:13account and a team portal account.
• 29:16So theoretically the team can have
• 29:17their own portal and then the
• 29:19parents should have their own portal,
• 29:21but we have not, as I mentioned,
• 29:23released a lot of information to
• 29:25teens through the portal that
• 29:27their parents don't get because
• 29:29of some of the challenges.
• 29:31And and one of the things that we
• 29:34looked at is we had some very clear
• 29:37indications that parents often
• 29:39had access to the team portals,
• 29:41even though it was supposed to be.
• 29:43It was supposed to be a confidential
• 29:45account that only the team would
• 29:47have access to.
• 29:48So we did a large study where we did
• 29:50manual inspection of the accounts.
• 29:52We looked at the parents email address
• 29:54compared that to the email address
• 29:56associated with the teenage accounts,
• 29:58and also did some natural language
• 29:59processing of the portal messages.
• 30:01And showed that through
• 30:02all this message message.
• 30:03These methods that well over half
• 30:0757% of our supposed confidential
• 30:10teen accounts were actually being
• 30:12accessed by the parents or proxies.
• 30:15And so to look and see how big an
• 30:17issue this was at other Children's
• 30:19Hospital we partnered with Rady
• 30:21Children's and with Nationwide
• 30:22children and took just the natural
• 30:24language processing part of the
• 30:26algorithm of the of the method.
• 30:28So just for looking at only.
• 30:31Where a message went back and forth
• 30:33between the provider and the supposed
• 30:35teen and evaluating that message
• 30:37to see if it was obvious that it
• 30:39might be the parent talking instead
• 30:41of the teen and just looking at
• 30:43that method or show we're able to
• 30:45show that more than half of those
• 30:47team portal accounts at all three
• 30:48of these children's hospitals were
• 30:50being accessed inappropriately
• 30:51by the parents of the guardians.
• 30:55It the IT decreases and sorry,
• 30:57this graph isn't perfect,
• 30:58but it it the rate decreases as
• 31:00the as the child gets older the
• 31:01teens get older but it's still.
• 31:03It's still very significant at
• 31:05at least 40% inappropriate access
• 31:06for even those 17 to 18 year olds.
• 31:09So again,
• 31:09just highlighting that there's
• 31:11so much work to do.
• 31:12And even if we think we know how
• 31:14we want to separate out data for
• 31:16teens and for for our parents,
• 31:18we have these huge challenges around.
• 31:20How do we even ensure that we have
• 31:23confidential accounts and communication?
• 31:25Of the teens where we think we do.
• 31:29There's lots of reasons for for
• 31:31why this might be happening.
• 31:33I'm I'm not going to go through,
• 31:36go through all of this.
• 31:37We've been looking through that.
• 31:38We've been doing a ton of work
• 31:40to try to address it,
• 31:41but there's a lot more to do
• 31:44and I'll just say.
• 31:45This is where you kind of
• 31:47really get into back.
• 31:47You know that back to that
• 31:49scale and weighing the
• 31:50pros and cons of how best to proceed.
• 31:53Because in our first pass.
• 31:55We identified all of the supposedly
• 31:58corrected accounts accounts
• 31:59where the parents had access.
• 32:01We tried to address to reach out to
• 32:04patients and parents and fix them,
• 32:06but ultimately we're not able to reach
• 32:08a lot of those patients and parents and
• 32:12ended up deactivating 1800 more than 1800
• 32:15accounts that we thought were compromised.
• 32:17So it gets to, you know then,
• 32:19are you accidentally,
• 32:21or you know or purposely.
• 32:23Restricting access to
• 32:25information to those teens.
• 32:28So these were really challenging questions,
• 32:30and again,
• 32:30I'm so thankful we have so many great
• 32:32people working on this across the nation,
• 32:34but it's absolutely critical that we
• 32:36keep focusing on this to get to the
• 32:38right answer so that we can reap the
• 32:40benefits of of creating transparency
• 32:43and empowering our patients and families.
• 32:47And before I transition to
• 32:50a two mothers information,
• 32:52I'll just highlight one other area.
• 32:55That's that.
• 32:55I think people need to think about,
• 32:57and this is the area of diminished capacity.
• 33:00So you know,
• 33:01for adult patients greater than 18,
• 33:03you can establish legal conservatorships.
• 33:06And if you know if a if a
• 33:09if a person over 18 has,
• 33:11you know significantly diminished
• 33:12capacity where they can't take care of
• 33:14themselves and they can't take care
• 33:15of their own medical information,
• 33:16you can establish conservatorships and
• 33:17then you can have a guardian that gets.
• 33:19Access to all their information in cases
• 33:22of diminished capacity for a teenager.
• 33:24For somebody who's less than 18,
• 33:25it gets a little bit more complicated
• 33:27because theoretically, according to HIPAA,
• 33:30the Guardian already has.
• 33:32Has a right to their information,
• 33:34except for these you know,
• 33:35except for these state consent
• 33:36laws and so in the case where the
• 33:39adolescent would not be would not
• 33:41have the capacity ever to consent
• 33:43for the care that's protected by
• 33:45those adolescent state consent laws.
• 33:48It's important to have a process
• 33:49that you can establish that.
• 33:50So then the parents or the guardians
• 33:52can get access to all the information
• 33:54again so that they can best take
• 33:56care of that patient,
• 33:57and so we have a diminished
• 33:58capacity workflow.
• 33:59Many other children hospitals do,
• 34:01but it's just,
• 34:01uh,
• 34:02it's the slight nuance that it's
• 34:03important to think through in order to
• 34:05make sure that you are not causing harm.
• 34:07To those you know,
• 34:08often very complex adolescents who
• 34:10some of the some of the consent
• 34:12laws don't actually apply to.
• 34:17Alright, I'm transitioning significantly
• 34:19to mother sensitive data and I
• 34:21only have a few slides on this,
• 34:24and I know Doctor Mercurio has
• 34:25thought thought a lot about this,
• 34:27so this is an area that I would love
• 34:30to talk more about in that honestly
• 34:33we are only starting to address
• 34:35at our organization and that is
• 34:38mothers data in the babies chart,
• 34:40so historically, mothers information
• 34:42that is believed to be relevant to the.
• 34:46You know to the baby's health has
• 34:49has automatically or or manually
• 34:51been copied into the baby's chart,
• 34:53and that includes things like
• 34:55prior pregnancy histories,
• 34:56abortion histories, miscarriage histories,
• 34:59sexually transmitted, infections,
• 35:01alcohol, drug medication histories,
• 35:03mental health issues,
• 35:05and other relevant medical conditions.
• 35:07So it can be incredibly
• 35:09sensitive information.
• 35:10And when you realize you know
• 35:11it's one thing if that's in the
• 35:13mother's chart and she has control
• 35:15over who gets that information.
• 35:17When it's in the babies chart,
• 35:18suddenly the other guardian,
• 35:21the father,
• 35:23or you know,
• 35:24court appointed guardian or whoever
• 35:26also has access to that very
• 35:28sensitive information and that
• 35:30can come up in custody battles.
• 35:31Or it can cause you know.
• 35:33Harmed relationship.
• 35:34Where a father friends at something
• 35:36he didn't know about.
• 35:37Incidentally through through this mechanism.
• 35:41Additionally, the baby,
• 35:43when they reach adolescence,
• 35:45or at least by the time they reach adulthood,
• 35:48will then have access to it so a
• 35:50mother may not want to share her.
• 35:52Her abortion history with her 12 year
• 35:55old right or or her drug and alcohol issues,
• 35:59or any of that.
• 36:00And yet, if it becomes part of the baby's
• 36:02chart and then the baby gets access to it,
• 36:05suddenly it's taken out of
• 36:07the mother's hands again.
• 36:09These are not new issues.
• 36:11So again,
• 36:12since the time of hip up,
• 36:14patients have theoretically
• 36:15had a right to the record,
• 36:16but it wasn't as prevalent.
• 36:19Many people didn't know that many people
• 36:21didn't access that record and and now
• 36:24it's just so much easier to get that.
• 36:25And then I'd like Tronic form,
• 36:27so these issues are just being
• 36:28resurfaced because of ubiquity.
• 36:30Ubiquity of information sharing in
• 36:33the easy nature in electronic format.
• 36:35This is an article back in
• 36:37the AP news back in 2014.
• 36:39Kind of talking about this
• 36:40in the Pre Cures Act.
• 36:42Age and and you can really see.
• 36:46I don't know.
• 36:46I think of it as as the paternalism.
• 36:48You know, the kind of built
• 36:50in paternalism in Pediatrics,
• 36:51where we really are.
• 36:53You know are trying to take care
• 36:55of the baby and and think that is
• 36:58absolutely necessary that we use the
• 37:00mothers information to take care of the baby.
• 37:02And you know,
• 37:02with the best of intentions.
• 37:03So newborn ZHR contains
• 37:05information about current health
• 37:06and past history of the mother.
• 37:08Some of this information is critically
• 37:10important to the inference care,
• 37:11gestational diabetes or
• 37:12active use of illegal drugs.
• 37:14But some maybe not unnecessary.
• 37:16And so the nursery record
• 37:17is unique in that it
• 37:18contains both. It contains HIPAA
• 37:20protected health information for
• 37:22more than one individual, and.
• 37:25And clearly you know the
• 37:28information from the mother has has.
• 37:31Can have significant implications on
• 37:34the baby's health and and I would
• 37:37wholeheartedly agree that having access
• 37:39to that in the inn as we care for the
• 37:42baby will help us care for the child.
• 37:44I think we're gets challenging is that
• 37:46there has just been this practice,
• 37:48but you know,
• 37:49in the way that babies are delivered
• 37:50and their mothers chart is there,
• 37:52and then you're immediately taking care
• 37:53of the baby and the Dell room and you
• 37:55got the mother and the baby's chart
• 37:56where the mothers information is just
• 37:57automatically copied in the babies
• 37:59chart without the mothers awareness.
• 38:01I think in most cases and we don't
• 38:03see the similar similar processes
• 38:05having happen with father's.
• 38:07I think most compliance officers,
• 38:11most infamous would be aghast if we said,
• 38:14yeah, I'm just going to open
• 38:15the father's chart and.
• 38:15And you know,
• 38:16automatically copy anything that's
• 38:18pertinent about the father's
• 38:19health into the babies chart.
• 38:20We just wouldn't do that,
• 38:23even though it may be very relevant
• 38:25to the to the child health.
• 38:27And yet, in the case of the mother baby bond,
• 38:29we we somehow think that that
• 38:30it's OK to kind of automatically
• 38:32put that in the baby's chart.
• 38:34And I'm being a little bit provocative here.
• 38:36I think most people realize there
• 38:38are significant implications,
• 38:39and there has been a lot of work done.
• 38:41And I know Doctor Mercurio had there
• 38:42can speak to some of the interesting
• 38:44work that's been done here at Yale.
• 38:46And but I I think it is incredibly
• 38:49important that one we are very thoughtful
• 38:51in what information goes in there.
• 38:53And and two,
• 38:54I really think we need to kind
• 38:56of rethink about our processes
• 38:57and the awareness that we.
• 39:02Think about, think about our process
• 39:04and think about how we can protect this
• 39:06information and make sure that that moms
• 39:08are aware where their information is going.
• 39:10And I already mentioned,
• 39:12you know there's father other guardians,
• 39:13a child can all have access to this
• 39:15information, so there's kind of
• 39:17significant implications for the mother.
• 39:20They're the kind of slate slate analog to
• 39:23this is that there can also be sometimes
• 39:26other information about other family members,
• 39:29so a mom might say something about a
• 39:31father's health care or a father's health,
• 39:33or a father might give information
• 39:36about their health that is.
• 39:38Sorry, relevant to the baby and and
• 39:42may not want that share broadly.
• 39:45There is a stipulation in HIPAA that
• 39:47says that any information disclosed to
• 39:50the provider by another person who is
• 39:53not a health care provider and given
• 39:55under the promise of confidentiality
• 39:56can be withheld from the patient.
• 39:58But it it depends on that person.
• 40:03Knowing that and specifically saying I
• 40:05don't want this release to the patient.
• 40:07And then the the provider,
• 40:09knowing technically how to protect
• 40:10that information so it doesn't get
• 40:12to release the patient.
• 40:13So again,
• 40:14conceptually this is there,
• 40:16but there are a lot of barriers
• 40:17to protecting this information.
• 40:22Alright.
• 40:25Lots of information so far.
• 40:26I'm gonna change topics totally
• 40:27one more time for the last couple
• 40:29minutes and then we'll stop for a
• 40:31conversation and and definitely love.
• 40:33Would love to hear your all your thoughts
• 40:36and and ideas and continue to partner with.
• 40:40All of our broad community just kind
• 40:41of solve some of these problems,
• 40:43but one last piece of the cure is
• 40:45act was was the stipulation that not
• 40:47only do we have to make this this
• 40:51information available electronically,
• 40:52you know, through portals or
• 40:54whatever mechanism we decide,
• 40:55but we also have to allow for application
• 40:59programming interfaces that make this
• 41:01information available to third party
• 41:03apps like the Apple Health record.
• 41:06And and we've seen this, you know,
• 41:08so that Apple health record
• 41:10came online 2018 last year.
• 41:12Commonhealth came online with a Android
• 41:16analogue to Apple Health records,
• 41:18and when they did that, the VA,
• 41:20you know now says that they're,
• 41:22they're essentially making all
• 41:23of their patient data available
• 41:25through these through these apps.
• 41:27So, so we are seeing these apps
• 41:30kind of taking on more and more.
• 41:34Importance definitely with COVID.
• 41:35We saw lots of conversations and
• 41:38are still able seeing lots of
• 41:40conversations about how you might get
• 41:42your vaccine information on your phone.
• 41:45There is lots of debate about
• 41:46how exactly this will work,
• 41:47but again,
• 41:48kind of giving the giving a picture
• 41:51into how getting health information
• 41:53directly from your hospital and into your
• 41:56phone or into an app might be useful.
• 41:59There are all kinds of theoretical
• 42:01implications for how getting
• 42:02this information into apps.
• 42:04You know might be useful down the line.
• 42:05I will say most of the applications
• 42:08still have yet to be developed and we
• 42:10and we haven't seen this take off as
• 42:11much as I think some people thought it
• 42:13would but but the potential is there.
• 42:17But again brings up lots of
• 42:19challenges for for children and teens.
• 42:21If you start releasing this
• 42:23information in JS third party app
• 42:24so you know one is just this.
• 42:26If these apps end up being useful and
• 42:29helpful for managing health care issues,
• 42:33they may not apply to children because
• 42:35children thankfully aren't born with
• 42:36the phone and so it's at least some
• 42:38number of years before they have
• 42:39their own device in their own app,
• 42:41which makes it challenging for them to.
• 42:43For some of these for.
• 42:45Does where do you set which?
• 42:48Where do you send the child data?
• 42:49Do you send the parents after you
• 42:50send it to the child's app you're
• 42:52trying to do remote monitoring.
• 42:53The child may not have a device,
• 42:55so there's all kinds of challenges
• 42:56you have to think through.
• 42:57You have to think through the proxy
• 42:59workflows and and does you know how do
• 43:02you technically set up the information
• 43:04going to the parent of a child?
• 43:06Virtually confirming a guardian
• 43:07relationship and making sure that
• 43:09if you're when you're doing it,
• 43:10virtually that that truly is
• 43:12the right person who should
• 43:13have access to that data is a challenge.
• 43:15Segregating the parent and the child data.
• 43:17It's a challenge.
• 43:18The child data privacy laws,
• 43:20COPPA in particular bring all
• 43:22kinds of implications and how you,
• 43:25how you make sure that you're
• 43:26that you are protecting the
• 43:27child's privacy is a huge issue.
• 43:30And then all of the adolescent
• 43:32confidentiality issues that I talked
• 43:33about kind of become amplified.
• 43:35When you're thinking about a third
• 43:36party app so all kinds of considerations
• 43:38there that we have to work through.
• 43:40If these apps are ever going to
• 43:42be safely and meaningfully to
• 43:43Floyd deployed by four children,
• 43:46not to mention.
• 43:48This concept of inappropriate sharing
• 43:50by parents or teens and again these are
• 43:53all issues that existed before this.
• 43:56Before electronic health information
• 43:57sharing and before these API's
• 43:59and before these apps.
• 44:01You know,
• 44:02even though this was an article in 2020.
• 44:05But about about this kind of trend
• 44:09of parents getting reports of their
• 44:11of their child's genetic information
• 44:13and putting it and then posting
• 44:15it for whatever mechanism for.
• 44:17Trying to for all kinds of reasons
• 44:20for like trying to to understand
• 44:22their child condition or just 'cause
• 44:25I thought it was cool or whatever,
• 44:27but now that all this information
• 44:29is electronic,
• 44:29it's so much easier for a parent
• 44:31to share that information in a
• 44:34large scale electronically,
• 44:35and that could have significant
• 44:37implications for that child.
• 44:39Is does a parent really have the right
• 44:41to share that information for the
• 44:42child life that may then affect them?
• 44:44You know it's out there for
• 44:45the rest of your life,
• 44:45and child can't take it back.
• 44:48Similarly,
• 44:48you know if a team gets access to
• 44:50their health information and thinks
• 44:51it's cool to put it on Snapchat and
• 44:53then that health information is out
• 44:55there and and available and searchable
• 44:58and has implications for their future.
• 45:00You know insurability or all
• 45:02kinds of you know employability,
• 45:04all kinds of things down the line you know.
• 45:06Should teens be allowed to do
• 45:08that when they don't really maybe
• 45:10understand the implications?
• 45:11I think there's all kinds of
• 45:13potential challenges here,
• 45:14but what?
• 45:15But it's not clear that we have,
• 45:18and necessarily any ability to restrict
• 45:20this from a legal standpoint right now.
• 45:23I think these are kind of conversations
• 45:25that again we need to continue
• 45:26to have and continue to advocate
• 45:29for the right policies to to help
• 45:32protect children information when
• 45:34they are still underage.
• 45:36So again, sorry,
• 45:38lots more questions than answers,
• 45:40but I think you can see there is
• 45:43a huge potential here to empower
• 45:46and engage patient pediatric
• 45:48patients and their families,
• 45:50but a lot of questions that we
• 45:51are opening up and a lot of work
• 45:53to be done to really think about
• 45:54how to do this thoughtfully
• 45:56and carefully and ethically.
• 45:57Thankfully again,
• 45:58lots of people across the country
• 46:00that we're working with an incredible
• 46:03team at Stanford children that is
• 46:05focused on pediatric informatics issues
• 46:07and adolescent informatics issues.
• 46:09In particular, so thank you to all
• 46:11of these amazing people and look
• 46:13forward to talking with you all.
• 46:19Thank you so much Natalie.
• 46:23This is this is hard.
• 46:24This is really important and this is
• 46:28really hard and so I'm delighted that
• 46:30we've had a chance for you to to to
• 46:33share some information with this.
• 46:34I invite anyone you folks who have
• 46:36questions or comments to send them
• 46:38through the Q&A and then I will read
• 46:40them for Natalie and we can try and
• 46:42work our way through some of this stuff.
• 46:44I'll go ahead and take the first one.
• 46:45I know it's hard and you did
• 46:46allude to it and I appreciate that,
• 46:48but very specifically in the world of babies.
• 46:54I don't really see a way around
• 46:57withholding some information,
• 46:59and I don't know if this is going to
• 47:00be a problem for us legally, etc.
• 47:02A way that we dealt with it now and
• 47:06I don't know what your thoughts are
• 47:07on this is to say that we're going to
• 47:09take all the information about the
• 47:11mother and put in the baby's admission.
• 47:12That was not all the information,
• 47:13but the information that we need
• 47:15to take proper care of.
• 47:16The baby will put that in the admission note,
• 47:18but then it will not appear in any
• 47:20of the subsequent notes on the baby's
• 47:21care and I have to tell you it from
• 47:23a practical standpoint.
• 47:24That's a little bit of a pain in the
• 47:26neck because you're going through
• 47:27and you often find yourself wondering
• 47:28why did we do this? Why?
• 47:29Why is this happening with this child?
• 47:31Then you go back and look and you
• 47:32kind of put two and two together
• 47:34because no one comments on it.
• 47:35After the admission though,
• 47:36if it's related to the mother's
• 47:38illness or any of the mother's
• 47:40laboratory results, etc.
• 47:41So I don't know what you think about that.
• 47:45And then we don't.
• 47:46Of course,
• 47:46we block that history and physical
• 47:49on the baby,
• 47:50which we're we're discouraged from doing.
• 47:53But we don't really see a way around it.
• 47:54I wonder what you think of that solution?
• 47:56Or if you've thought of a better one,
• 47:58we've definitely not thought of a better one.
• 48:00I, I think there are several.
• 48:03There are several pieces that
• 48:04solution that I really like,
• 48:05and it does, you know,
• 48:06kind of automatically protect the
• 48:08information from for the mother.
• 48:09I think you know being controversial.
• 48:12Some people would argue so,
• 48:14so HIPAA kind of clearly states that if
• 48:16there is information that is relevant to,
• 48:19you know from a family member that's relevant
• 48:20to the baby that it should be shared,
• 48:22that it's not necessarily protected,
• 48:24and it's part of the patients medical record.
• 48:26Again, I think this is a really sticky area
• 48:28because I don't think the mother knows
• 48:30that her information is going in there,
• 48:31so I think there's a question of whether
• 48:33we should have even been putting that
• 48:34information in there in the 1st place.
• 48:36So I think what you are doing
• 48:38is the right thing to do,
• 48:39but it would be super helpful that is
• 48:41not clear like in the conversations
• 48:43that I've heard with the NC.
• 48:45I don't even think that piece is clear,
• 48:47so I think it would be really
• 48:49helpful to clarify that yes,
• 48:51if we are taking if we are taking
• 48:52mothers information and putting
• 48:53it in the medical record that we
• 48:55should be withholding it from the.
• 48:56From the patient and the and the father.
• 48:59And then we need to work with our
• 49:01EHR vendor partners to do it in a
• 49:02more elegant way than you're having
• 49:04to do it right now.
• 49:05I think that the way you guys
• 49:07you all have done it.
• 49:08Is A is,
• 49:10you know,
• 49:11is again a good effort given the technology
• 49:14that we have ideally would make it,
• 49:16we'd have a clearer place where this
• 49:18is where the moms information goes
• 49:19and it will be protected and you
• 49:21all and everybody knows where to
• 49:23find it so you're not having some
• 49:24of the issues that you talked about,
• 49:25but that takes technical development.
• 49:28So I think there's both a policy
• 49:30and a technical piece there,
• 49:31and but your your solution is.
• 49:33It's better than what we have right now.
• 49:34I would say
• 49:35thank you. Thank you.
• 49:36I have a question from my colleague who
• 49:39is a very good with these things and
• 49:43let's see if Alex question was since
• 49:45the beginning of our patient portal.
• 49:47We've struggled with what to
• 49:49release to adolescent proxies.
• 49:51The main issue is that so far
• 49:53the data has not been segregated,
• 49:55IE ocps and antibiotics are all meds.
• 49:59What are EMR? Which is epic like yours?
• 50:01Does not allow segregation of
• 50:03different classes of medication.
• 50:05Same with procedures, appointments, etc.
• 50:07Do you have any thoughts on pushing
• 50:09EMR companies to do better?
• 50:11Yeah, and and definitely you know.
• 50:14I think they're both kind of
• 50:15policy pieces here and then.
• 50:16There's the technical pieces
• 50:18and and so we are, you know,
• 50:21we said we are epic and Epic has been
• 50:24actively working with several of our
• 50:27communities across the nation and.
• 50:29The good news is they just released
• 50:32their medication segregation
• 50:33information or functionality.
• 50:34It's tricky and so there are several
• 50:38organizations around the country
• 50:39that are starting to pilot that,
• 50:42but this is what we need.
• 50:43We really need to partner with our
• 50:45or the vendor partners and and help
• 50:47them understand exactly what we need
• 50:48and give them the feedback to develop
• 50:50it and then pilot it and then re it,
• 50:52you know and then improve it until
• 50:53it works the way we want it to work.
• 50:55So I I think yes,
• 50:56we absolutely need a partner with
• 50:59our vendor partners and and.
• 51:01Our vendor partners have heard from
• 51:02us at Stanford Children's Loud and
• 51:04clear as well as communities across
• 51:06the country and they are responding.
• 51:08But I think the same thing needs to
• 51:09happen with every vendor partner
• 51:10that we're working with.
• 51:11There is this group like I
• 51:13mentioned called P P2P.
• 51:14I promoting privacy, protecting.
• 51:18About protecting privacy mode.
• 51:19In probability there go protecting
• 51:21privacy to promote interoperability,
• 51:23and that is a large group of
• 51:26stakeholders and informatics,
• 51:27cyst and legal experts and
• 51:29policymakers across the nation that
• 51:30is specifically looking at how do we
• 51:33better segregate data and what are
• 51:35some of the standards we can create
• 51:36to make it easier for vendors to do that.
• 51:38So I think it's you know,
• 51:39it's clarifying the policy.
• 51:41It's clarifying kind of standards
• 51:43that we need for how to do it
• 51:44and then working with our vendor
• 51:46partners to do it and all that,
• 51:48all those bodies of work.
• 51:49Have to happen simultaneously.
• 51:51Thank you, the next question is could
• 51:54you comment further on the dilemma of
• 51:56a parent who does not want data shared
• 51:59from practitioner #1 to practitioner #2?
• 52:01How can we resolve the data sharing
• 52:04needs with preferences of parents?
• 52:06This may apply to to the emancipated minor.
• 52:10Yeah, uh, I am.
• 52:11Fortunately I would love to know
• 52:13if you all have any thoughts.
• 52:14I would love this attack here.
• 52:15I don't have a great answer
• 52:17here and I think it's this is
• 52:18where it gets really sticky.
• 52:22And there are, you know,
• 52:26parent patients or the OR in
• 52:28the case of of minor parents
• 52:30do have some rights to inhibit
• 52:32inhibit information sharing.
• 52:36It. I mean, and clearly there's
• 52:39implications I I honestly just don't
• 52:40have a good answer for this one,
• 52:42nor do I understand completely all of our
• 52:44legal options when it gets to this piece.
• 52:46It's it's a really sticky situation.
• 52:49Well, you know it's it's some
• 52:50this is hard as I talked about,
• 52:52but to have someone who doesn't really
• 52:54have a good answer to say I don't
• 52:56really have a good answer is a very
• 52:58refreshing moment in the in the Academy.
• 53:00On behalf of the entire Academy worldwide,
• 53:03we thank you for intellectual honesty.
• 53:06Good for you and good for us.
• 53:09Question fortunately, well,
• 53:11this this is hard stopping this
• 53:12is this is being worked out.
• 53:14I mean I'm delighted that people
• 53:15like you were are leading the charge,
• 53:17but we're a long way from having
• 53:18this figured out and so absolutely,
• 53:20this is really helpful for us
• 53:21to hear from you next question,
• 53:22are you delaying release of sensitive
• 53:24information with a with a set timer
• 53:26where the final release of notes once
• 53:28the doctor speaks with the patient doctor
• 53:30has to remember to release a draft.
• 53:32And no,
• 53:34we are not. And again these are,
• 53:35you know this is the kind of conversations
• 53:37that are going on across the country and
• 53:39it's interesting to see how differently.
• 53:41The institutions across the country
• 53:42have implemented the same rules,
• 53:44and I again I think some of us will
• 53:46come down and it'll be interesting
• 53:48to see how the ONC eventually
• 53:50eventually enforces some of these acts,
• 53:53but so we for the most part are
• 53:56not delaying any of our results.
• 53:58But there are a few. Again,
• 54:00this is where it gets to state specific laws.
• 54:01We have a few state specific
• 54:04laws that say we have to notify.
• 54:07The patient before,
• 54:08before releasing the information and it's
• 54:10like around HIV and a few like I think.
• 54:12Huntingtons a few specific disease
• 54:14cases so those we have specific
• 54:17delays on but for the most part
• 54:19we we don't have a delay,
• 54:20we're doing it immediately which
• 54:22sometimes means that the parent or the
• 54:24patient sees it before the provider.
• 54:27Something that I, I suspect this
• 54:29is something we're all gonna need
• 54:31to be aware of and be on top of.
• 54:33And it's it's just gonna become part of
• 54:36our culture of our lives is that you're
• 54:38going to get a call from a parent saying,
• 54:40you know in in the newborn,
• 54:41nice view where I work.
• 54:42Of course you know the
• 54:43head ultrasound is done.
• 54:44It goes in there and say you know,
• 54:45what do you think of today's head ultrasound?
• 54:47And then that's when you go in,
• 54:48you see, because if you've been busy
• 54:50doing other things you didn't see
• 54:52the ultrasound yet from 2 hours ago.
• 54:54Exactly, I think that's going to
• 54:55that is going to become a kind
• 54:58of part of our culture.
• 54:58The parents see things before we do,
• 55:00and one thing somewhat related to that.
• 55:04A cousin to this that I've encountered
• 55:06more than a few times is parents who
• 55:08were very often in the child's room.
• 55:10Then they will very often know the
• 55:13cardiologist opinion before I do,
• 55:14because the cardiologist comes in,
• 55:16examines the child.
• 55:18And the mother's right there.
• 55:19And she says, what do you think?
• 55:21And he'll say, well,
• 55:22I think XY and Z and then the mother.
• 55:25I'll walk in the room 5 minutes later
• 55:26and I'll say to the mother, you know,
• 55:28I've asked the cardiologist to come
• 55:29take a listen and she'll say to me.
• 55:31Well, yes he did,
• 55:32and he thinks XY and Z, and I think,
• 55:35well, OK, I didn't know that yet.
• 55:36You know I haven't spoke with him,
• 55:38and some of it. We just have to be accepting.
• 55:40This is how it's going to roll now
• 55:42if it's been two days later and I
• 55:43haven't heard from the cardiologist,
• 55:45I'm gonna look pretty foolish.
• 55:46If it's been 10 minutes later and I
• 55:48haven't yet spoken to the cardiologist.
• 55:50I think most parents are inclined
• 55:51to understand that this is how it's
• 55:53gonna be as we do these things.
• 55:55But the fact matter is that that it's
• 55:57not the most parents that I think
• 55:58are going to make this difficult.
• 56:00It is the the the five or 10% of
• 56:02parents who are extremely anxious or
• 56:04who are extremely distrustful of the
• 56:06system and the individual clinicians.
• 56:08And this is going to that that
• 56:10this is going to very much.
• 56:13Potentially aggravates some of that,
• 56:15and we've got to be aware that this
• 56:17is sort of the world we live in now.
• 56:20You mentioned on one thing that
• 56:22I jotted down.
• 56:22You talked about the the,
• 56:23the privacy harm exception and I wanted
• 56:25to clarify this because this is important.
• 56:27You said that we don't have to
• 56:29include notes of regarding things that
• 56:31maybe preparation for legal matters.
• 56:33So for example,
• 56:34sometimes the nurse or the physician
• 56:36or the social worker will write
• 56:39something in there because they are
• 56:41for wanting for want of a better word.
• 56:43Trying to build a case to bring to DCF,
• 56:46for example, that this child should
• 56:48not go home with these parents.
• 56:50So did I hear you correctly for
• 56:52notes such as that those it's
• 56:53appropriate to block those notes?
• 56:55Yeah, I mean, that's that's language
• 56:57straight from HIPAA, and so this is,
• 56:59where again it's so it's not new, right?
• 57:01So this is where your compliance
• 57:03team and your him department have
• 57:05probably looked through this and
• 57:06should have a policy around that.
• 57:08So yeah, that should absolutely be protected,
• 57:10but just work with your your own hims
• 57:12department and and and compliance team.
• 57:14And they'll tell you their
• 57:15mechanisms for protecting that.
• 57:17Seems to me we need to make sure that
• 57:19this becomes then a separate note.
• 57:21So the problem is that that if I'm
• 57:24writing my progress note for the day,
• 57:26and then you know under you know,
• 57:28under nutrition, I put all the
• 57:30nutritional information under social.
• 57:32I mentioned that the that the father
• 57:34and the mother were screaming at each
• 57:35other for 20 minutes in the room.
• 57:37That's all the same note,
• 57:38and now I have documented that observation,
• 57:40which I think is important,
• 57:41but it it's got to be in a different
• 57:43note then because that whole big
• 57:45note still needs to be shared.
• 57:47Exactly,
• 57:48and that's where you know.
• 57:49And that's where this kind of the
• 57:51segregation becomes important.
• 57:52So right now we're, that's how we,
• 57:54that's how we are functioning
• 57:55as we can either share a whole
• 57:57note or not share a whole note.
• 57:58There are lots.
• 57:59There's lots of development and and
• 58:01conversations about creating notes
• 58:02where you could have subsections
• 58:04that are shared and not shared.
• 58:06And I think we will see that,
• 58:08which again, you know part of what we're
• 58:10dealing with is trying to do the right thing,
• 58:13but we've all heard so much about
• 58:15documentation burden, and DHR burnout,
• 58:16and all those types of things.
• 58:17And if we're really making providers now,
• 58:19document several different notes in order
• 58:21to get each note in the right place,
• 58:23it adds to the burden.
• 58:24So this is where we need to
• 58:25continue to partner with our.
• 58:26You know,
• 58:27with our vendor partners and get development
• 58:30that will both help us do the right thing,
• 58:32but in a way that it is
• 58:33consistent with our workflow.
• 58:34So yes,
• 58:35right now it needs to be 2 separate notes.
• 58:37Hopefully we'll get to a place
• 58:39where it's not so cumbersome.
• 58:41That that would certainly be
• 58:42helpful 'cause the burnout is real,
• 58:43obviously and and and they tell somebody
• 58:45will not write a separate note about that.
• 58:47It's just his likely that the exhausted
• 58:50clinician is gonna say never mind.
• 58:52Then go ahead and open up yet
• 58:53another note and enter it in.
• 58:54Depending on how the day is
• 58:55going and how tired they are.
• 58:56I'm not saying that's the right thing to do.
• 58:58I'm saying that that smart planning
• 59:01figures in the the humanity and
• 59:03the flaws of those of us who
• 59:05are who are providing the care.
• 59:07Another question please.
• 59:10Given the already critical epidemic
• 59:12of clinician burnout exacerbated by
• 59:14the strain of the COVID pandemic,
• 59:16you probably heard about that.
• 59:18How do you propose we provide adequate
• 59:20support for clinicians to manage the
• 59:23increased workload that open notes and
• 59:25immediate result release might create?
• 59:29Yeah, it's I mean you know incredibly
• 59:31important question as we were
• 59:32kind of just talking about it.
• 59:33You know, I think this will be a shift
• 59:36in our culture and I think you know,
• 59:38just as you're kind of pointing out
• 59:40with the having parents at the bedside
• 59:41has been a shift in our culture,
• 59:43and having them see the specialist, you
• 59:45know it's a shift in our culture and it does.
• 59:47It will change the way that we interact
• 59:50with our patients and families.
• 59:52I think in the long run it
• 59:53will be a beneficial thing.
• 59:55I think they will understand more.
• 59:56I think they'll have access to notes they
• 59:58won't have to come back to us to say hey,
• 59:59what? What was that again,
• 01:00:00that you said last time?
• 01:00:02So I think they're you know there's gonna be
• 01:00:05shifts both ways but but it's going to be.
• 01:00:07It's going to be hard, change is hard
• 01:00:09and we don't know exactly what the how,
• 01:00:12how it's going to play out in the end.
• 01:00:13So we need to continue to
• 01:00:16educate our providers.
• 01:00:17We need to support them.
• 01:00:18And then as we're just talking about
• 01:00:20work with our with our technical teams to
• 01:00:22develop functionality that will make it
• 01:00:25easy to do the right thing and and you know,
• 01:00:27right now we're facing.
• 01:00:28I'm sure everybody is facing.
• 01:00:30Come in in the age of COVID and
• 01:00:32and digital medicine is these.
• 01:00:34You know in basket overloads and how.
• 01:00:36How much are how much messaging
• 01:00:37we're getting from our patients
• 01:00:38directly through in basket?
• 01:00:39Because people are people are
• 01:00:42digitally messaging us right?
• 01:00:44These are the transitions we're
• 01:00:46going to continue to see,
• 01:00:47I think.
• 01:00:50It's it's it is hard,
• 01:00:52it is it is work but we need
• 01:00:54to continue to to say OK,
• 01:00:56we're transitioning this way.
• 01:00:57How again do we? Do we change our
• 01:01:00system to support this new way of care?
• 01:01:02And you know how do we again develop
• 01:01:04our information systems to make
• 01:01:05it easier to do the right thing,
• 01:01:07but it's going to be a slow
• 01:01:08transition and it it does increase
• 01:01:10burden in the in the interim
• 01:01:12and you know, I mean,
• 01:01:13I think that our transition to the EMR,
• 01:01:15which wasn't that long ago was
• 01:01:16clearly a good evidence that this
• 01:01:18transition was painful and there
• 01:01:19were many bumps on the road.
• 01:01:21There still are bumps in the road.
• 01:01:22But I think at this point most of us
• 01:01:24would acknowledge that it's better
• 01:01:25than it was 15 years ago in terms of,
• 01:01:28you know, calling up the old chart,
• 01:01:30it says it's a very different experience
• 01:01:32or trying to figure out you know what
• 01:01:34someone so said the three months ago.
• 01:01:36It's it's a much,
• 01:01:37much better experience or finding
• 01:01:39a laboratory values quickly, etc.
• 01:01:40So overall, these things do get better,
• 01:01:42but it's a hard one along the way.
• 01:01:44Which kind of my inclination as a chief is.
• 01:01:47I'm trying to help my crew work their
• 01:01:49way through it as an old doc trying to
• 01:01:51help myself work my way through it.
• 01:01:52And connection is to cut the
• 01:01:54people who work with me.
• 01:01:56A little bit of slack as they as they
• 01:01:58make this adjustment and maybe even to
• 01:02:00try and cut myself a little bit of slack.
• 01:02:02But my question to you is in terms
• 01:02:05of the outside world cutting us
• 01:02:06a little bit of slack as we get
• 01:02:08this thing where it needs to be.
• 01:02:10Are you aware of the specific punishments?
• 01:02:15I've been no punishments yet for
• 01:02:17for blocking a note or for revealing
• 01:02:19information about someone in someone
• 01:02:21elses note, that sort of thing.
• 01:02:23Yeah, for providers they haven't even they
• 01:02:25haven't even specified what they will be.
• 01:02:27So so for the for the for the
• 01:02:30larger institutional players
• 01:02:31there's been a few few cases in
• 01:02:33that even kind of gets back to hit,
• 01:02:35but not necessarily the Cures Act,
• 01:02:36but they haven't even they haven't
• 01:02:38even specified what it would be for.
• 01:02:41You know the for the provider organizations,
• 01:02:43so I I do think.
• 01:02:45You know that is the rule was put out there.
• 01:02:48It's like the goal is what
• 01:02:50people wanna get too.
• 01:02:51But I I think that is kind of how we're
• 01:02:53being cut some slack is there isn't
• 01:02:55enforcement at our level as we kind of
• 01:02:57all try to to figure this out again,
• 01:03:00I expect that to happen at some
• 01:03:02point and that's when it.
• 01:03:04That's when you know we'll really
• 01:03:06kind of understand more about.
• 01:03:08How it's going to be enforced and
• 01:03:10how strict some of these things are.
• 01:03:11But in the meantime,
• 01:03:12I think it's important that we
• 01:03:14continue to advocate for the for
• 01:03:15the nuanced and the changes that
• 01:03:16need to be done to do it right.
• 01:03:20Is there any evidence that concern about
• 01:03:23open note policy and regulations is affected
• 01:03:25in what is being entered into an EMR?
• 01:03:28As Mark suggested? As I suggested,
• 01:03:30is there any evidence these changes
• 01:03:32are changing the content of notes,
• 01:03:34either because and then the note falls off.
• 01:03:36So are these changing the content of notes?
• 01:03:38I have my opinion I'm interested
• 01:03:39in much more in yours, Natalie
• 01:03:41so, and this is where I highly
• 01:03:43recommend going to the Open Notes
• 01:03:45website 'cause they have they have
• 01:03:47kind of accumulated literature over
• 01:03:48the last couple decades for for.
• 01:03:50Studies of open notes and and
• 01:03:53generally people are, you know,
• 01:03:54concerned that had been concerned
• 01:03:56that when you do open notes that
• 01:03:59providers would then change, you know,
• 01:04:01change the way they write notes and
• 01:04:03and use and not use medical medical
• 01:04:06terminology and that they might
• 01:04:08become watered down in general,
• 01:04:11like the the kind of generic
• 01:04:12findings from most of those studies
• 01:04:14is that there hasn't been a major
• 01:04:16change in the content of the notes.
• 01:04:18There are guidelines and and
• 01:04:20some interesting.
• 01:04:21Anecdotes around, you know,
• 01:04:22specific language changes that
• 01:04:24might be particularly offensive,
• 01:04:25like not using *** as an abbreviation,
• 01:04:30but but when they you know the studies
• 01:04:32where they look at where they look
• 01:04:34at the content of the notes and
• 01:04:36whether they've been watered down,
• 01:04:38whether they've been, you know,
• 01:04:39using less medical jargon,
• 01:04:41there hasn't been the.
• 01:04:43That there hasn't been evidence
• 01:04:45that there's been major changes
• 01:04:46in the notes themselves,
• 01:04:48but I think that's that's that's
• 01:04:50good news to hear that I,
• 01:04:52my personal experiences that that there
• 01:04:54has been maybe unitology is kind of a
• 01:04:56special case because we we go out of our
• 01:04:58way to avoid information about the mother,
• 01:05:00etc that ties directly into
• 01:05:01what we're doing for the baby.
• 01:05:03Why is this baby small?
• 01:05:04Why are the platelets low?
• 01:05:05Well, this can all relate back to myself,
• 01:05:06and we're not getting into that, so.
• 01:05:11That you know.
• 01:05:11And I do think that there's the
• 01:05:13possibility I'm pleased that the
• 01:05:15studies show that that's not the case.
• 01:05:17I also worry because, you know, for us,
• 01:05:19in Pediatrics with family centered rounds,
• 01:05:22you know on a related issue,
• 01:05:23so we've been encouraged,
• 01:05:24for example, on family centered
• 01:05:25rounds which have taken a set back.
• 01:05:28Now because of all the COVID,
• 01:05:29isolations, etc.
• 01:05:29But when we're running, don't use jargon,
• 01:05:32don't use medical lease.
• 01:05:34I've actually, with my crew,
• 01:05:35pushed back against that because I say no,
• 01:05:37I want you to have a medical
• 01:05:39conversation with the fellow.
• 01:05:41I want that the resident and
• 01:05:42fellow we're talking about this.
• 01:05:43I don't want you to just use words
• 01:05:45you knew in junior high school.
• 01:05:46I, you know,
• 01:05:47I want you to use medical terms and then
• 01:05:50afterwards by all means, let's translate.
• 01:05:52But let's not let's not use,
• 01:05:56you know, let's not use a word.
• 01:05:57Let's not, you know,
• 01:05:58you can't say tachycardia.
• 01:05:59'cause people don't know what that means.
• 01:06:00No,
• 01:06:01I don't want to do that.
• 01:06:02I mean,
• 01:06:02I think that we should still be able
• 01:06:04to communicate with one another
• 01:06:06on a level of sophistication
• 01:06:07that the case requires.
• 01:06:08Then I also think that that
• 01:06:10in fairness and openness.
• 01:06:11We should translate this for families,
• 01:06:15but but I think the idea that that
• 01:06:17family centered rounds or our
• 01:06:19communications should always be in
• 01:06:21language that the family can understand.
• 01:06:23I'm I would push back against that idea.
• 01:06:26Yeah, I agree, and I think and and you know,
• 01:06:29I think most people who talk about
• 01:06:30open notes in the sharing the idea
• 01:06:32is not to translate our notes into
• 01:06:34messages to the patients, right?
• 01:06:35The idea is there are still medical
• 01:06:38notes that help that help a care team.
• 01:06:40You know, primarily focus on.
• 01:06:41Provide care that patient,
• 01:06:43but you're just making them available so that
• 01:06:45you know the example I gave with the parent.
• 01:06:47She can take that medical note from one
• 01:06:49provider and show it to the specialist,
• 01:06:51and so they have access to it,
• 01:06:53but it's you know they have
• 01:06:54their discharge summaries.
• 01:06:55They have their patient instructions.
• 01:06:56Those are meant to be at the patient level.
• 01:06:59These are still meant to be medical notes
• 01:07:00and I think they should stay that way.
• 01:07:02You know to the comment of the you know
• 01:07:04whether or not our notes are changing.
• 01:07:05The studies that have been done.
• 01:07:07I think it's you know it's important
• 01:07:08to look at the at the the the way
• 01:07:10they've done that and I think there
• 01:07:12are significant limitations so.
• 01:07:14I'm sure you know,
• 01:07:15I'm sure if we had different
• 01:07:17ways of of really looking at how
• 01:07:19those those notes have changed,
• 01:07:20we might be able to find different
• 01:07:22things and and it's it's.
• 01:07:23It's hard to to. It's a.
• 01:07:24It's a hard study to do.
• 01:07:27Yeah, well Doctor Natalie Paessler
• 01:07:29we've got much work to do ahead to
• 01:07:32sort ourselves through this stuff.
• 01:07:35We take no small amount of comfort
• 01:07:36in knowing that there are folks
• 01:07:38like you who are leading the charge
• 01:07:39as we work our way through these
• 01:07:41things to try and get to a better,
• 01:07:43more more open, more fair,
• 01:07:46and more efficient and feasible plan.
• 01:07:48I really appreciate you taking
• 01:07:50the time to come speak to us
• 01:07:52tonight and I would just ask if
• 01:07:54there is anything actually wait.
• 01:07:55Up I thought it was a final question,
• 01:07:58but it is a final bravo so I hear out
• 01:08:00of Bravo so I would ask you if there's
• 01:08:02any final message you want to share
• 01:08:04with us before we close it for tonight.
• 01:08:07No, I just just you know,
• 01:08:08thank you for listening to this.
• 01:08:10I think this is these are super
• 01:08:12important challenges that really have
• 01:08:14the potential to to empower our patients
• 01:08:16and families if they're done correctly.
• 01:08:19But as you can tell,
• 01:08:20there's a lot of advocacy and
• 01:08:22education that we need to do.
• 01:08:24So just you know, please help,
• 01:08:26please stay aware and please
• 01:08:28continue to partner with all of
• 01:08:29us so that we can get to the
• 01:08:31right solutions for our patients,
• 01:08:32families and our providers.
• 01:08:35Well said, thank you so very much
• 01:08:37and thanks to all of you folks
• 01:08:38for joining us this evening.
• 01:08:39I wish you all a good night.
• 01:08:40We'll see you again in a couple weeks.
• 01:08:42Thank you Doctor Paisley goodnight.