Considerations for Health Information Sharing in Pediatrics in the Era of the 21st Century Cures Act
January 07, 2022Information
January 5, 2022
Natalie M. Pageler MD, MEd
Chief Medical Information Officer, Stanford Children’s Health
Clinical Professor of Pediatric Critical Care, Stanford University
Program Director, Clinical Informatics Fellowship, Stanford University
ID7332
To CiteDCA Citation Guide
- 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.