If you build it, will they come?
By admin | Popularity: 5%I recently received my first email directly from one of my teen patients. I was thrilled! It was a long wait for us to get messaging up for parents of kids in our practice, as well as the teens themselves. The message was straightforward–a young woman I take care of needed a refill fo some of her asthma medications before leaving on a sports-related trip. She got her medicines, of course!
This is still the only message I have received from a teen in 5 months. So I did a quick check with my colleagues, and the experience is the same–we built it, but not very many teens have used messaging yet. I wonder why?
We knew from pre-HIPAA experience in California that when email access to an adolescent specialist was offered to parents and their teens, the parents accounted for 95% of emails, so I did not expect huge volumes of messages. But I think it also has something to do with how complicated it can all seem. Teen confidentiality rules are not easy to explain in 2 sentences or less, and it is even harder to quickly explain how our computers respect those rules. I think this makes it hard for physicians and other providers to enthusiastically promote email access in the exam room. Since providers are the single most effective sales force for email, that limits our success. I have to admit that even I, who ought to be our biggest champion for teen access, sometimes run out of time and energy to promote it with my teen patients.
I also think the teens are wary of a system in which their parents can read the secure email they send and receive. This is separate from the teen’s yahoo account, and is behind a secure firewall, but if their parents have access, both the teen and the parent can see the same emails. We have been very transparent about this, and have been very clear that email is not meant for confidential topics. But I think many teens still find this threatening.
Our software vendor (Epic) does have some major improvements in the confidentiality feature coming in a future release, so I hope that concern will go away for the teens soon. In the meantime, I am trying to figure out how to distill an explanation of what the teens can see, what the parents can see, and why into something that is short and easy for everyone to use. Tall order!
In the meantime, I am left with an email I got this morning from the mother of a child I take care of with autism. He is doing extremely well, thanks to endless energy from his parents and good early intervention. It was very easy for this mom to send me a message to update me, say thanks, and wish me happy holidays. I am not sure it would have happened if she had to leave a phone message. It is a wonderful start to the holidays for me, and reinforces why it is still worth spending time making access easy and safe for teens and their parents.
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November 26th, 2007 at 4:11 pm
Mark,
I was trying to explain the legal & ethical challenges of teen messaging to someone recently…without much success. I know that it varies from state to state (and is complicated enough even in one jurisdiction), but could you provide a brief synopsis of how you dealt with those issues in setting up teen messaging?
Thanks,
Josh
November 27th, 2007 at 2:50 pm
Dear Josh,
I did gloss over the confidentiality details, as I thought it would be way too long a post. So here are the details.
In Colorado, teens (13-17) can consent for treatment for certain conditions without their parents permission. This includes pregnancy, sexual health (birth control, STDs, and prevention like the HPV vaccine), chemical dependency, and mental health (starting at age 15). If those services are given confidentially, we cannot disclose that information to the parents. The parent does have the right to any other information in their child’s chart, and we need their permission to treat anything outside these confidential issues. There is nothing that says we must give parents that access online, but the nonconfidential information belongs to them.
It is important to know that almost any piece of data in a chart can be confidential. If Doxycycline is used to treat acne, that is not confidential, but if it is used to treat Chlamydia, it is. What if a teen develops an allergy to Doxycycline while treating Chlamydia? That should be confidential, but is it safe to keep a potentially dangerous allergy from a parent? If a parent consents for her dauighter to get the HPV vaccine (which is the case nearly all the time), that information is not confidential. But if a teen who is or is about to become sexually active decides to get the HPV without her parent’s permission, that is confidential. Throat cultures for strept aren’t confidential. Pregnancy tests are. Past office visit summaries from most visits are not confidential, but the summary from a mental health visit is. Same with future appointments. My point is that it becomes exceptionally difficult to decide what information in a chart might be appropriate to show a parent, and what information might not. After several years of wrestling with this, I have concluded that it is not possible to set up computer algorithms that get even close to always getting it right. What is needed is the ability for a clinician to mark a piece of data as confidential at the time they see the patient (or after), so that a system would know that data flagged confidential should not be shown to parents of teens, but everything else can be. When our software vendor (Epic) designed their database, no one was really thinking about these nuances (there was a lot else to do!!). Bottom line–if we give parents access to a feature like labs or allergies, for some small number of teens, there is a risk their parents will be given access to confidential information.
So what did we do? We had a multidisciplinary group of staff, including pediatricians, family medicine doctors, mental health professionals, OB/Gyn, midlevel providers, nursing staff, as well as other staff who are also parents of teens to serve as the parent voice, and walked through the pros and cons of each feature. We also consulted with an attorney well versed in these issues to be sure we weren’t going out on a limb. And then we took our decisions to our teen advisory group, to see if they thought we were on the right track.
The features available to an adult right now in Colorado include Your Ongoing Conditions (chronic illnesses), Your Medications, Your Allergies, Your Imunizations, Your Lab Test Results, Your Past Office Visits, Future Visits, Cancel Appointments, and Email Your Doctor. For the teens themselves, we decided to give access to all features except Your Ongoing Health Conditions. The reason for this exclusion is that some teens with serious or lethal illnesses may know they have something, but not knwo specifically what it is, because their parents have not felt the time was right to give them the full details. We did not think it was appropriate to take that right away from parents. But everything else the teen should know about–they know what medicines they take, they know when they have had labs, why not let them see this online?
For parents of kids 12 and under, we were able to give them access to the complete list of features. At 13, that access terminates, and the parents fill out a form to request access to their teen’s chart. When complete, they get access to the allergies and emails only. Though only a small fraction of teens have labs, meds, etc that are confidential, for the moment this is the only way we have to avoid systematically exposing that information to parents. The ability to mark data confidential on the fly is not something we will have soon, if ever–it would be an exceptionally complex undertaking for our software vendor. We also realized only after we launched that for a parent to access their teen’s account, the teen must have also activated their personal account–if they don’t we can give the parent access.
Lastly, as I mentioned in my post, the teen’s email inbasket is behind the firewall for kp.org, our website, so it is secure from public access and is HIPAA compliant. But if the teen and the parent are both active, both can see all messages–they are not confidential. Epic does have an improvement coming in a future release that will allow messages to be reliably marked as confidential and kept from parents by the teen (or vice versa).
I mentioned our Kaiser Permanente Youth Advisory Council (KP YAC for short). To my knowledge, only the Colorado region has one. It is a council of 15-20 teens who volunteer to meet with us once every 2-3 months on a Saturday morning to hear our plans and give us input on how we provide care to teens. They are a remarkable and articulate group, and I never fail to be amazed when I visit them. When we presented our plans to them, they did understand why it is desirable to block the list of chronic conditions from the teens. They did value the opportunity to have access to their charts, and to email their doctors, though they also were not sure how often they would use it. And for the shared email inbox, they thought that it was better to have a shared basket for now, rather than not to have email access at all. But they were very clear that it wasn’t good enough, and should only be a step along the way!
Sorry to be so long winded. I hope this provides you the information you are looking for. I am very curious to know what others think of our process and decisions.
Best, Mark
November 27th, 2007 at 3:48 pm
Mark,
This is really helpful and very clear.
…Of course, despite the great detail you’ve provided, it’s also a vast oversimplification of the national issue in that–as you point out–these determinations are made by state law, so there are probably 50 different answers to the question.
Ted, how have the laws in Washington state been interpreted by Group Health with respect to teen and parent connectivity? And how have those laws affected what Group Health has rolled out so far?
For other Kaiser Permanente regions besides Colorado, I’d be interested to hear how they have addressed these issues similarly or differently from Colorado. I imagine it’s particularly complicated for regions that are governed by multiple state laws (such as Mid-Atlantic, which has to make it work in 3 jurisdictions).
–Josh
November 27th, 2007 at 8:10 pm
Hi Josh,
To my knowledge, no other Kaiser Permanente region has elected to do both teen and teen parent access. I will have to check on whether any regions have chosen to do one or the other but not both. Since Ted and I will be attending a meeting in the next 2 days with all the regions to talk about this kind of issue, I should be able to give you an update soon.
Best, Mark
November 28th, 2007 at 8:26 am
I think the best way to explore this issue is over the course of time, rather than on one single post. As I say, “If patient-physician secure messaging has a difficulty level of 1, then proxy-physician secure messaging has a difficulty level of 10, and teen-physician messaging has a difficulty of 100.”
What Mark can do in his weekly posts is discuss a case that we’ve encountered (theoretical or not), and then compare approaches. The beauty of a blog is that the conversation never ends.
In the meantime, I’ve added the Society for Adolescent Medicine’s position paper on Confidenial Health Care as a link in the sidebar.
December 1st, 2007 at 10:12 am
Kaiser’s Ohio region reviewed the decisions of the other 7 before it made its decisions about Teen access and Act on Behalf of a Teen. Our laws are comparable to those of Colorado; the difference is in legal interpretation. We have given adults access to their own lab results, health conditions, medications, allergies, immunizations, past visit information and email with their providers; and have given parents/guardians the same access for kids under 12. When the kid becomes a teen, they have access to secure email, lab results, allergies and immunizations and their parents only have access to allergies and immunizations.
Our advisory group (chiefs of BHS, Pediatrics, Primary Care and OB/GYN) all decided that the teen should be able to confidentially email their providers and that their parents had other avenues of communication. The interpretation: per Ohio Revised Code - parents were required to be notified if a teen applied for access to their PHR.