Written by  Kattie Sepehri

research project: user-centred design priciples – accessibility to personal health records for caregivers of children living with health complexities 

Lead investigators/designated PI’s

 Kattie Sepehri and Karon E. MacLean 

Project approval date

Aug 27, 2021


As of March 2022, we have reached our recruitment target. 

Children living with health complexities (CLHC) and their caregivers require continuity of care to improve their quality of life and decrease the family burden. These children require visits to different doctors and medical teams on a regular basis and are exposed to the fragmentation of the medical system. A large volume of data in various formats is gathered from numerous medical visits and in many cases, the families need to repeat their stories to different care providers. We aim to conduct a study applying user-centered design to understand how these caregivers and/or parents hope to access their child’s personal health records digitally.

The purpose of this study is to identify personal health record accessibility principles and metrics that are appropriate to meet the needs of CLHC and their caregivers and/or parents. 


  • Understand the most critical user requirements for CLHC caregivers
  • Identify design principles and metrics for accessibility to personal health records for CLHC caregivers
  • Identify use cases that will enable testing and assessing other prototypes/apps for this population
  • Determine usability and accessibility of the created prototypes

The process for gathering this information will take place in the form of semi-structured remote interviews via Zoom, as well as testing prototypes and providing information on participants’ experiences.