Adolescent EHRs: Taking Confidentiality One Step Further
By Kaye Eisele
Adolescence is a challenging time of life. Not only are teens learning to navigate through the transition from childhood to adulthood, they are also learning to communicate independently to healthcare providers about their individual care. When confidentiality is observed between the adolescent and health care provider, open communication and trust flourish, thus providing the teen with a solid base in which to teach them how to manage their own healthcare issues as they move into adulthood. It is the goal of any pediatrician to help adolescents manage their own healthcare in a positive and trustworthy manner. Trust is an essential ingredient when treating the adolescent patient because if teens do not feel that their confidentiality is protected, they may not fully communicate questions or concerns about their own health to their physician.
Electronic health records require specific tailoring in which to meet the needs of adolescents’ health care issues and in order to maintain confidentiality as dictated by state laws. Teens often face very real and challenging medical issues such as contraception, depression, alcohol and substance abuse problems. In other words, their health care issues can be very similar to that of any other adult. But EHRs should be tailored to meet specific state confidentiality laws as they vary from state-to-state, though not widely. HIPAA regulations defer confidentiality laws and parental health disclosure laws between adolescents and their parents or legal guardians to individual states.
Adolescence: The First Time Seeking Independent Treatment
While adolescents’ healthcare issues are not specific to that particular age, adolescence is, nonetheless, the first time teens are independently seeking out healthcare advice and/or treatment. The first patient-physician relationship is important as its results can form the future successes when adolescents seek healthcare treatment as adults, or whether they hesitate to seek future treatment based on the success and confidentiality of the treatment when they were younger. Their healthcare issues can be equally complicated to that of adults’ and electronic health records should take into account this uniqueness of the adolescent EHR. For instance, if the biological parents are not the primary guardians of an adolescent, as in the case of foster children, electronic health care records should accurately reflect that. Or if the teen has divorced parents, one parent may be the primary decision maker in serious health events. These are just some of the many unique instances where EHRs should reflect the appropriate information of the adolescent medical record.
The challenge of electronic health records for adolescents needs to be duly considered when developing EHRs and promoting their interoperability. The discussion around EHRs does not entirely address pediatric records and their uniqueness, but, more specifically, adolescent EHRs. At the forefront of adolescent EHRs is capturing the confidentiality aspects, or laws, as they pertain to what information is shared with the teen’s parents. By a certain age, most adolescents are deemed responsible enough to seek out their own medical treatment and most state laws dictate that they may do so without parental consent, other than in emergent or life-threatening medical situations, as well as for drug testing. Certainly the presenting problem has much to do with which medical information may be shared between the treating physician or healthcare provider and the parent as pertinent to the adolescent patient.
EHRs: Specific to State Disclosure Laws for Adolescents?
While many EHRs continue to be developed, hospitals and practices should take heed as to whether their specific state laws protecting adolescents’ privacy are incorporated into the typical adolescent healthcare record. As with EHRs pertaining to most age groups, the success of their interoperability will be determined in part by consents. Assuming that informed consents will be worked into all EHRs, the sharing of EHRs between outside healthcare agencies should be determined primarily by the patient and adhered to by all medical personnel who treat the patient. It should be no different for adolescents, and a step further would be including consent forms for parental disclosure or non-disclosure of sensitive medical information. Some adolescent patients may have no problem sharing their medical information with their parents, but many teens prefer that their sensitive healthcare issues be kept between themselves and their clinicians, especially the older the teens become.
The major healthcare issues facing teens include contraception, sexually transmitted diseases, pregnancy, drug and alcohol abuse, peer relationship abuse, obesity and depression. Some issues are more sensitive than others and most adolescents will develop a stronger working relationship with their healthcare providers if they can entrust them to protect their confidence about these issues. Privacy protection could include flagging within EHRs the sensitive medical information which can be written into the computer programs and systems at the time of EHR development, or added on shortly after initiating EHR usage. An adolescent may wish for their parents to be privy to any healthcare related information about their obesity, but discussions around contraception with their healthcare provider may be kept confidential or not shared with the parent. On the other side of the spectrum, HIPAA laws are such that if the caregiver is concerned about harm or abuse to a child or adolescent, the care provider may remove the parent from the patient’s legal representative or parental status whereby the parent no longer has access to any of the patient’s medical records. Flags for these instances in pediatric and adolescent care should also be incorporated into EHRs as this type of documentation is imperative.
Emergency Situations Not Considered Confidential
Likewise, if an adolescent is, for example, expressing suicidal or homicidal ideation to their therapist, this is something that may be shared with the parents of the teen and this is made clear to the patient at any initial sessions, if not incorporated into the consent form. Some universities and colleges have policies that if a student is talking about suicide, the family or parent must be notified. These are special circumstances for which the EHR must have the ability to override confidentiality within the system, as well as life-threatening diseases or conditions that are the presenting problems.
Issues surrounding mental health, contraception, etc., can be kept confidential when adolescents are seeking treatment, sometimes for the very first times in their lives. In order for EHRs to be effective for this specific population, EHRs must be made confidential with regards to various diagnoses and healthcare treatments, and it’s a step further than the usual confidentiality issues that are so important in the successful treatment of adolescents when taking into account non-parental disclosure.
As Edward Gotlieb, MD, FAAP, who represented the American Academy of Pediatricians said in July 2008 when addressing the House Committee, “EHR systems should support privacy policies that vary by age and according to presenting problem and diagnosis, and [they] should be flexible enough to handle the policies of individual practices.” Gotlieb also felt that EHRs should be flexible in their handling of privacy and consent issues, including those dealing with emergency situations, adoption, and other issues as they pertain to pediatric or adolescent patients. Like so many aspects of future EHRs, several important details have yet to be considered. Not unique to the task of protecting confidentiality in adult and pediatric EHRs, adolescent EHRs must take the process one step further.