Privacy of Health Forms

[HashTagScouts]

24 minutes ago, willray said:

Parts A and B, the only parts required for standard activities, do not require a signature by a health-care provider (except in a few states where apparently a health-care provider's signature is required to permit someone else to dispense medications to youth).

Or, state restrictions on who can carry and dispense medications.  New Hampshire, for example, requires all summer camps to have medical personnel (RN, NP, PA, MD) on site, and requires that all medications (prescription or OTC) be held in that persons control.  Under the law, you can't even keep ibuprofen on your possession or in your troop first aid kit (not to say that doesn't happen...).

[mds3d]

I am on the side of this discussion that thinks you don't want the BSA to try to even self-enforce HIPAA style privacy on BSA medical forms.  

First, my reasoning behind the thought.  HIPAA is important of several reasons. First, because interaction with healthcare is an essential activity.  You might need to go to the hospital where people know you.  Second, you don't have any real measure of control over what goes in your chart or who views it.  This in addition to the fact that many people from your nurse, to a pharmacy technician, to the lab staff, to the billing department, to your insurance company will need to view your information to treat, charge, and pay for your care. Because you don't have control or even knowledge of all the people who have a legitimate need to view your info, then it increases the likelihood that someone will accidentally or intentionally violate your privacy.  For example, someone might loose a copy of your charge sheet or the preacher's wife might work in the lab that found your STD.  This increase in risk with necessary actions increases the need for protection of your health data. 

You BSA health record is a voluntary document.  I know you have to have it for some activities, but you don't need to participate in those activities. I and the people who you volunteer for are glad you do, but you don't need to.  Additionally, the number of people who need to see your information is very limited and in most circumstances you have a great deal of control.  Personally, I like the idea of a sealed envelope that is returned to you with the additional question asked of "Do we need to know anything about your medical history ahead of time?"

Finally, I think the BSA should take the policy of "do we really need to know this information?" This is called a minimum necessary policy. If someone has medications that an adult who is not a guardian needs to handle we need to know that, if you have an allergy that requires you to carry and epi-pen we need to know that, if you have a history that might change how we react to a situation (like diabetes) we need to know that, if you have a history of cancer/depression/stroke we don't need to know that.  I would even argue that very few things fall into that third statement. If your doctor has to sign your form and you have something you are uncomfortable sharing talk to your doctor about if it really needs to be shared. I am sure there is a reasonable middle ground that doesn't require disclosure of everything. 

[ParkMan]

1 hour ago, mds3d said:

Finally, I think the BSA should take the policy of "do we really need to know this information?" This is called a minimum necessary policy. If someone has medications that an adult who is not a guardian needs to handle we need to know that, if you have an allergy that requires you to carry and epi-pen we need to know that, if you have a history that might change how we react to a situation (like diabetes) we need to know that, if you have a history of cancer/depression/stroke we don't need to know that.  I would even argue that very few things fall into that third statement. If your doctor has to sign your form and you have something you are uncomfortable sharing talk to your doctor about if it really needs to be shared. I am sure there is a reasonable middle ground that doesn't require disclosure of everything. 

The more I read this topic, the more I'm coming to the same conclusion.  I understand why we want to know if a Scout has asthma.  For youth we really should know a lot more because of the simple fact that as leaders we are responsible for them while they are away from their family.  We, as leaders, probably have limited knowledge about some very important health issues.  if we relied on everyone to voluntarily share them, we'd get a wide vareity of information and may truely not be prepared to adequately supervise them.

But, in the case of adults, there is realtively little we need to know outside of significant backcountry excursions.  The Philmont health staff ought to know if you have a cardiac condition.  For a typical adult on a pack or troop camping trip a health form is probably excessive.  Once you get to the level of registered adults at summer camp, it begins to make more sense - but even there it's probably unneccesary as well.

[RememberSchiff]

3 hours ago, willray said:

I should actually say - a large part of the reason for HIPAA in the first place, is that you have very little control of what's in "your medical record" as your doctor accesses it.

On the other hand, you have complete control over what goes on the Part A and Part B health forms.  If there is something that you don't want anyone to know about, don't put it on the form.  If you're absolutely certain that no-one has any legitimate need for the information, why include it on the form?   Now, if you leave something off, and either you are harmed, or harm someone else because of the omission, that's clearly going to be on your head, but with the BSA forms that's a choice you get to make : are you more worried about someone knowing X from your medical history, or about you coming to or causing harm by them not knowing X?  

Yes, but that adult will not be admitted to the scout activity, at least not around here.  We have fewer adults volunteering for summer camp due to  information being asked which they feel is not needed and the lack of security in handling that information.  Most  adults expect their info to be returned to them at the conclusion of the activity, as in, show me the law. 

I did omit my $$# when the Health Form required a Social Security. National  felt that ER's required that info for treatment.  Not true..

As I said earlier,  my idea  for treating grown-ups as grown-ups.

The personal medical information form  would have the results of the most recent exam, medical history, prescriptions, vaccinations, and insurance.  This would be securely held  and handled by the adult and  trained medical personnel. 

The activity permission form would list permitted, restricted, prohibited activities, as well as allergy, contact and pickup information. Non-medical personnel , such as units, could have copies of this form. Non-medical personnel would have patient relevant info for basic first aid .

Another $0.02

[willray]

1 hour ago, RememberSchiff said:

As I said earlier,  my idea  for treating grown-ups as grown-ups.

The personal medical information form  would have the results of the most recent exam, medical history, prescriptions, vaccinations, and insurance.  This would be securely held  and handled by the adult and  trained medical personnel. 

The activity permission form would list permitted, restricted, prohibited activities, as well as allergy, contact and pickup information. Non-medical personnel , such as units, could have copies of this form. Non-medical personnel would have patient relevant info for basic first aid .

Another $0.02

I think there's room for differing opinions with respect to whether that's treating adults as adults, or as spoiled children who will take their ball and go home if they don't get their way 🙂

That aside, it sounds like you're suggesting that we add a requirement, in addition to the 2-registered adults, for an EMT to be present at all scout activities where health-forms are required?  I think Scouting can probably survive with those adults who are unwilling to trust a unit leader with their medical form, staying home, better than it can survive a requirement that units have an EMT on-site at all campouts/etc.

... I'm also not sure why you think that an adult who omitted a detail that only they knew in their medical history from the voluntary-disclosure on Part B, would be barred from participation in a scouting activity.

[willray]

1 hour ago, ParkMan said:

But, in the case of adults, there is realtively little we need to know outside of significant backcountry excursions.  The Philmont health staff ought to know if you have a cardiac condition.  For a typical adult on a pack or troop camping trip a health form is probably excessive.  Once you get to the level of registered adults at summer camp, it begins to make more sense - but even there it's probably unneccesary as well.

I'm afraid I have to differ.  Having had one of our adults go down, with what looked like a heart attack when we were on an overnight weekend campout, I'm grateful for the medical history details in our adult medical forms.  We weren't at Philmont, we were just at a small state park campsite in Ohio, 20-minutes dead run from the nearest cell phone signal, and about an hour from the nearest emergency-response team that could launch an ambulance.  You don't need to be in the backcountry to need information now, and for that information to be critical for keeping you alive.  "They're an adult, they can tell you what you need to know if you need to know it" doesn't work, when they're unconscious.

[ParkMan]

21 minutes ago, willray said:

I'm afraid I have to differ.  Having had one of our adults go down, with what looked like a heart attack when we were on an overnight weekend campout, I'm grateful for the medical history details in our adult medical forms.  We weren't at Philmont, we were just at a small state park campsite in Ohio, 20-minutes dead run from the nearest cell phone signal, and about an hour from the nearest emergency-response team that could launch an ambulance.  You don't need to be in the backcountry to need information now, and for that information to be critical for keeping you alive.  "They're an adult, they can tell you what you need to know if you need to know it" doesn't work, when they're unconscious.

I fully expect that we'll find cases like yours where the information was beneficial and I'm sure even life saving.  It's pretty much an indefensible argument to make that we should take the precaution to collect a healt from.

But, there are lots of places I visit with some freqency where something could happen and a health information form would be useful - church, work, my children's school just to name a few.  Yet, none of those ask me for a health form.  In an era where we have limited adult volunteers and we're working hard to get parents engaged I just wonder if it's worth the effort for unit leaders to deal with this administration for adults - particularly non-registered adults.  I suppose if it saves one life the answer if yes, it's worth it.  But, I do wonder.

 

[willray]

5 minutes ago, ParkMan said:

But, there are lots of places I visit with some freqency where something could happen and a health information form would be useful - church, work, my children's school just to name a few.  Yet, none of those ask me for a health form.

I think the difference, is that generally at Church, Work, and your Children's School, there is an expectation that an essentially immediate medical response is available.    Even on normal weekend campouts, even if they're car-camping, Scouts and Scouters are likely to end up far enough from an immediate response by emergency professionals that the unit adults/scouts may have to provide emergency care for 30 minutes or more.  That care could require access to some health history information.

I suspect you'll find that most organizations, Church, Work, School, etc, if they're going to put you in a situation where they are obliged to take responsibility for your health for any period of time, will also require that you give them the information that they'd need to do so, if necessary.

 

At the end of the day, I do agree with the "minimum necessary" information requirement though - which, since Part B is filled out by the individual, really is all that you're required to provide.   If it's irrelevant that you had your wisdom teeth removed, you probably don't include that in the history on Part B.  If there's something that might actually affect whether we can keep you alive long enough for professionals to arrive, it's up to you whether you include it or not.

At the end of the day it comes down to "A Scout is Trustworthy".  If you don't trust me to maintain confidentiality with whatever information you choose to include on your Part B form, you probably shouldn't trust me enough to go on a campout, or let your child go on a campout with me anyway.

[Eagle94-A1]

I agree with full medical disclosure for everyone, adults and youth alike. I had someone going into shock while taking him to the hospital. I wish I had the form with me to answer questions when I got to the hospital. Camp medic still had the form. I could not answer any thing they asked me, and he was not 100% there due to shock. Thankfully he was aware enough to give them a phone number and his parents were able to help.

Compare that to when I had to got the the ER, my form answered a lot of their questions.

As an adult who has taken responsibility for those forms for summer camp, I freely admit I go over every single one. I am making darn sure that all the i's are dotted and t's crossed. Had an incident one year where the parent did not approve the administration of over the counter drugs (Advil, Pepto-Bismal, etc). Thankfully they drove us to the camp and were still around to sign it. Otherwise no one would be able to give him anything if he got sick. I am not trying to find out anything, and in fact do not  remember anything other than whether the things I am looking for are signed or not. Oh and to make sure we have all three parts ( one year a mom sent in only Parts A and B. Thankfully we had a physician in the troop who gave him a physical right before we left!)

While I do see the day coming in which out the forms will no longer be needed, it won't happen for a while. With everything going to Electronic Medical Records (EMRs), once the different systems are integrated into each other, anyplace you go you will have access to a patients records. As it is right now, any facility using the EPIC EMR has access to anyone who has an EPIC record. So if you are in California and go to the ER there,  that ER has all  of your EPIC records recorded from your primary care physician in South Carolina, and vice versa.

 

[willray]

10 minutes ago, Eagle94-A1 said:

While I do see the day coming in which out the forms will no longer be needed, it won't happen for a while. With everything going to Electronic Medical Records (EMRs), once the different systems are integrated into each other, anyplace you go you will have access to a patients records. As it is right now, any facility using the EPIC EMR has access to anyone who has an EPIC record. So if you are in California and go to the ER there,  that ER has all  of your EPIC records recorded from your primary care physician in South Carolina, and vice versa.

Oh come on, it's too early in the day for blindsiding people with that kind wit.  I now need to clean the coffee out of my keyboard.

We've been on EPIC, I think pretty much from the start - probably 15?  17 years now?  And our physicians still need to keep backup paper copies of their charting records because EPIC so reliably loses or corrupts them.  My PCP, as well as a couple specialists, have been re-entering the same data about a cardiac event I suffered, at every visit for going on 4 years now, and the fact that I have a stent still comes as a surprise to every new clinician I interact with, because EPIC just keeps losing the data.

Don't trust EMRs to provide accurate information.  Not now, and probably not any time in our lifetimes.  The bureaucratic purpose for EPIC is as a billing system, not as a system to enable clinicians to provide care.  Unless you believe that some day bureaucrats are going to prioritize something other than their own interests, I wouldn't hold out much hope that it's going to improve.

Will 

[RichardB]

As the OP weaves its way along it might be good to review the first FAQ on why BSA has an Annual Health and Medical Record some but not all that have been batted back and forth.    

Q. Why does the BSA require all participants to have an Annual Health and Medical Record? 
A. The AMHR serves many purposes. Completing a health history promotes health awareness, collects necessary data, and provides medical professionals critical information needed to treat a patient in the event of an illness or injury. It also provides emergency contact information.

Poor health and/or lack of awareness of risk factors have led to disabling injuries, illnesses, and even fatalities. Because we care about our participants’ health and safety, the Boy Scouts of America has produced and required use of standardized annual health and medical information since at least the 1930s.

The medical record is used to prepare for high-adventure activities and increased physical activity. In some cases, it is used to review participants’ readiness for gatherings like the national Scout jamboree and other specialized activities.

Because many states regulate the camping industry, the Annual Health and Medical Record also serves as a tool that enables councils to operate day and resident camps and adhere to BSA and state requirements. The Boys Scouts of America’s Annual Health and Medical Record provides a standardized mechanism that can be used by members in all 50 states.

RichardB

[mds3d]

7 hours ago, willray said:

Oh come on, it's too early in the day for blindsiding people with that kind wit.  I now need to clean the coffee out of my keyboard.

We've been on EPIC, I think pretty much from the start - probably 15?  17 years now?  And our physicians still need to keep backup paper copies of their charting records because EPIC so reliably loses or corrupts them.  My PCP, as well as a couple specialists, have been re-entering the same data about a cardiac event I suffered, at every visit for going on 4 years now, and the fact that I have a stent still comes as a surprise to every new clinician I interact with, because EPIC just keeps losing the data.

Don't trust EMRs to provide accurate information.  Not now, and probably not any time in our lifetimes.  The bureaucratic purpose for EPIC is as a billing system, not as a system to enable clinicians to provide care.  Unless you believe that some day bureaucrats are going to prioritize something other than their own interests, I wouldn't hold out much hope that it's going to improve.

Will 

While exchange of information isn't quite a simple as presented, there must be something wrong with your Epic build.  I have never experienced any data loss or corruption with Epic. None of the physicians work with keep paper copies of anything. 

17 hours ago, willray said:

I'm afraid I have to differ.  Having had one of our adults go down, with what looked like a heart attack when we were on an overnight weekend campout, I'm grateful for the medical history details in our adult medical forms.  We weren't at Philmont, we were just at a small state park campsite in Ohio, 20-minutes dead run from the nearest cell phone signal, and about an hour from the nearest emergency-response team that could launch an ambulance.  You don't need to be in the backcountry to need information now, and for that information to be critical for keeping you alive.  "They're an adult, they can tell you what you need to know if you need to know it" doesn't work, when they're unconscious.

I am curious what you did about this adult who went down and how you handled the situation differently than if you hadn't known his history. 

I am a big advocate for medical alert dog tags that include emergency contacts with all your info. I also never advocated that people can tell you things as you need it but that are things that just don't need to be shared. 

I'll give an example.  I have epilepsy.  It is 100% controlled on my medication.  I don't tell people about it because they freak out and if I have a seizure what they really need to know is first aid, not that I have a history of it.  

[willray]

On 3/22/2019 at 3:52 PM, mds3d said:

While exchange of information isn't quite a simple as presented, there must be something wrong with your Epic build.  I have never experienced any data loss or corruption with Epic. None of the physicians work with keep paper copies of anything. 

We're a bit far afield, but I'm going to guess that you use EPIC in a "normal" practice or hospital setting?  If you're managing to make it even remotely useful for clinical trials/research data retrieval, you've managed to do something that's eluded Nationwide Children's and OSU's medical centers!

On 3/22/2019 at 3:52 PM, mds3d said:

I am curious what you did about this adult who went down and how you handled the situation differently than if you hadn't known his history. 

If we hadn't had access to medical history information, we probably would have felt obliged to hit the panic button on our Garmin InReach and called in a life-flight.  Having a few details from the medical history helped us decide that we could responsibly go with getting the individual to personal vehicle and bugging out in the direction of an ER.  To be sure, we rolled the dice on this one.  Having been dead before, I take cardiac symptoms rather seriously.  If we hadn't had someone saying "look here at this, it's plausibly X instead", I would not have been comfortable with that risk.

On 3/22/2019 at 3:52 PM, mds3d said:

I'll give an example.  I have epilepsy.  It is 100% controlled on my medication.  I don't tell people about it because they freak out and if I have a seizure what they really need to know is first aid, not that I have a history of it.  

I don't know enough about epilepsy, and particularly your variety, to know whether there's something different that should be done for first aid for it, compared to other medical emergencies that might look the same to someone giving first aid.  If there's absolutely no difference in what should be done for you, and anyone else who happens to have a non-epileptic seizure, and whatever information that would help EMTs is on your dog-tags, then I don't see how sharing information about your condition would be helpful on your medical history.

Dog-tags might be a good solution.  I'm not well-educated on what information can be encoded on them, what is required to access it, and whether there are any impediments to retrieving that information in areas without cell-phone/wireless coverage.  It's also not clear whether they satisfy the requirements of whatever state laws that BSA apparently feels they need to satisfy, regarding camping regulations.   Certainly, if they carry all the necessary information and satisfy legal requirements, having the person's medical history on the person would be a lot more helpful than having it in a binder of forms locked back in the troop van at the trailhead!

[mds3d]

On 3/25/2019 at 9:48 AM, willray said:

We're a bit far afield, but I'm going to guess that you use EPIC in a "normal" practice or hospital setting?  If you're managing to make it even remotely useful for clinical trials/research data retrieval, you've managed to do something that's eluded Nationwide Children's and OSU's medical centers!

If we hadn't had access to medical history information, we probably would have felt obliged to hit the panic button on our Garmin InReach and called in a life-flight.  Having a few details from the medical history helped us decide that we could responsibly go with getting the individual to personal vehicle and bugging out in the direction of an ER.  To be sure, we rolled the dice on this one.  Having been dead before, I take cardiac symptoms rather seriously...

I have one of these https://www.mydogtag.com/military/army-medical-warning-tag hanging with a normal dogtag/silencer

My name, DOB, emergency contact is on the normal with more medical information on the medical tag.  The red medical tag has more space (19char/line, 6 lines) than a normal sized dog tag.   As far as I am concerned it has all the medical information needed in an emergency situation. I wear them when ever I am in the wild. My suggestion is to summarize the important info on one or two tags. 

The point about my epilepsy is that it doesn't change appropriate seizure first aid.  You don't need to know that I have a history of seizures to provide first aid. Your example actually supports my point a little.  Without that information you would have overreacted. That isn't great but it certainly isn't as bad as under-reacting. 

[willray]

2 hours ago, mds3d said:

I have one of these https://www.mydogtag.com/military/army-medical-warning-tag hanging with a normal dogtag/silencer

My name, DOB, emergency contact is on the normal with more medical information on the medical tag.  The red medical tag has more space (19char/line, 6 lines) than a normal sized dog tag.   As far as I am concerned it has all the medical information needed in an emergency situation. I wear them when ever I am in the wild. My suggestion is to summarize the important info on one or two tags. 

The point about my epilepsy is that it doesn't change appropriate seizure first aid.  You don't need to know that I have a history of seizures to provide first aid. Your example actually supports my point a little.  Without that information you would have overreacted. That isn't great but it certainly isn't as bad as under-reacting. 

To my thinking, it comes down to whether either bystander-first-aid providers, or first-responders could use the information on the form, or on dog-tags, to more appropriately provide care.  I see absolutely no reason to provide any medical-history information that doesn't impact caregiving decisions in the field or in an ER.

In the case of our incident, I think everyone was grateful that we had information that allowed us to not go into full panic mode.  Certainly the scouter could have omitted all information from their medical form and would still have received adequate care, but I think it's questionably loyal, helpful or friendly to omit medical details from your form that would serve to modulate the rest of the troop's panic if you suffer from some lesser malady that persons with only basic first-aid training could reasonably mistake for something more serious in an emergency situation.  It sounds like your epilepsy doesn't fall into that category.