Abstract
Background For caregivers of adolescents and young adults with severe cognitive deficits, or
“diminished capacity,” access to the medical record can be critical. However, this
can be a challenge when utilizing the electronic health record (EHR) as information
is often restricted in order to protect adolescent confidentiality. Having enhanced
access for these proxies would be expected to improve engagement with the health system
for the families of these medically complex adolescents and young adults.
Objectives To describe a process for granting full EHR access to proxies of adolescents with
diminished capacity and young adults who are legally conserved while respecting regulations
supporting adolescent confidentiality.
Methods The first step in this initiative was to define the “diminished capacity” access
class for both adolescents and young adults. Once defined, workflows utilizing best
practice alerts were developed to support clinicians in providing the appropriate
documentation. In addition, processes were developed to minimize the possibility of
erroneously activating the diminished capacity access class for any given patient.
To enhance activation, a support tool was developed to identify patients who might
meet the criteria for diminished capacity proxy access. Finally, outreach and educations
were developed for providers and clinics to make them aware of this initiative.
Results Since activating this workflow, proxies of 138 adolescents and young adults have
been granted the diminished capacity proxy access class. Approximately 54% are between
12 and 17 years with 46% 18 years and older. Proxies for both age groups have engaged
with portal functionality at higher rates when compared to institutional rates of
use by proxies of the general pediatric population.
Conclusion With this quality improvement initiative, we were able to enhance EHR access and
engagement of families of some of the most complex adolescent and young adult patients
without inadvertently compromising adolescent confidentiality.
Keywords
adolescent confidentiality - portal access - diminished capacity - proxy access -
electronic health record
