Wednesday, May 15, 2013

Personal Health Record Use by Adolescents

In response to many questions about PHR use by adolescents, I asked Fabienne Bourgeois, the expert at Children's Hospital Boston, to write this guest blog post -

As more and more practices and hospitals are making patient portals available to their patients, providers of adolescent patients are encountering a major hurdle: how to handle confidential adolescent information.

While adult patients generally maintain full personal control of their personal health record (PHR), adolescent PHRs are anything but personal.  Adolescents rarely have full control of their record, but instead rely on parents and guardians to share control.  The details around this shared access changes over time, depending on developmental and age-appropriate considerations, as well as guardianship arrangements.  

The biggest challenge then, becomes how to protect the adolescent’s legal right to privacy and confidentiality within this hyprid/proxy-control model.  Many medical encounters with adolescents come with the verbal assurance that what they tell us will (under most circumstances) remain entirely confidential, meaning we will not discuss personal health information pertaining to reproductive health, sexually transmitted diseases, substance abuse and mental health with their parents or anyone else without their consent.   As it turns out, this type of confidential information is pervasive through most EHRs.

We've spent a lot of time thinking about this issue and adolescent access to our patient portal, and ultimately developed a custom built solution to meet our and our patients’ needs.

Our approach is built around differential access to the patient portal with the goal of mirroring current clinical practice and works as follows:

Access to the patient portal: Separate accounts are created for the patient and parent(s) that are linked. The parent has sole access to the patient's portal until the patient turns 13, at which point both the parent and the patient can have access.  We chose 13 years as our cut off based on a number of factors, including developmental maturity and other precedents at our institution based on their policies.  At 18 years, the patient becomes the sole owner of the portal account, and we deactivate the parent's link (unless we receive court documents stating that the parent remains the medical guardian).

Health information contained in the patient portal: We have identified and tagged certain information from our EHR that we consider sensitive, such as labs related to pregnancy, sexually transmitted illnesses, genetic results, select confidential appointments, and potentially sensitive problems and medications. This information is currently filtered from both parent and adolescent accounts, but in the near future the sensitive information will flow to the adolescent account, but not to the parent account. So, even if a patient is less than 13 years, the parent would not have access to this information.
This solution does take a lot of time and effort, but best replicates the current clinical practice. Many other current PHR structures do not allow for this type of differential access and only enable full proxy access.

Alternative solutions include the following:
1.    Shared access for patient and parent, but filtering of sensitive information. One could then choose the age at which patients would gain access without worrying about the parent seeing sensitive information at any age. This makes the age at which the patient obtains access, whether it is 10 or 13 years, less important. Unfortunately, this option restricts adolescent access to confidential information and creates a fragmented and incomplete record.

2.       Adolescent access only. This is trickier, because choosing the appropriate age when parental access is discontinued is difficult and may vary depending on patient characteristics.  Many practices choose 12 or 13 years. However, if sensitive information is not being filtered, you may very well have the occasional 11 year old with an STI. Also, some parents object to being cut off from their child's medical information and many play an important role in supporting their adolescent children and guiding them through healthcare decisions.

The issues and solutions involved with adolescent PHRs are certainly complex and will continue to evolve over time. However, I am hopeful that PHRs will start incorporating the unique needs of the adolescent population in the near future, allowing both parents and adolescents to share responsibility and engage in their healthcare.

For additional information, see this publication

Bourgeois FC,  Taylor PL, Emans  SJ, Nigrin DJ, Mandl KD. Whose personal control? Creating Private, Personally Controlled Health Records for Pediatric and Adolescent Patients  J. Am. Med. Inform. Assoc. 2008;15(6):737-743

1 comment:

pjcphd said...

What a forward thinking solution! I'm going to share this with my daughter's providers - even though our healthcare provider is part of an HMO model that regularly publishes about innovation in PHRs, we have no access to her PHR. This has resulted in significant delays in care which put her health at risk as she has a very rare genetic disorder.
When I had access to her PHR I could use secure messaging, check labs and monitor immunization status. Those tasks are now nearly impossible as each requires multiple phone calls, time on hold, waiting for call backs, etc. As a working single parent, my time is valuable, so I simply hope for the best!
As a clinical informaticist myself, I spent quite a bit of time last year lobbying our provider to change their policy regarding pediatric PHRs. At a minimum, allow parents to use secure messaging. I was told that's never going to happen. Perhaps adolescents are considered to be second class citizens.
What would be interesting to follow is how many adolescents voluntarily sign up for a PHR - they've got no memory of ever having one in the past, so why should they bother?