IIAM (important information about me): a patient portability profile app for adults, children and families with neurodevelopmental disabilities

Abstract

Purpose: To describe the development of important information about me (IIAM), an application (app) used to communicate and organize healthcare information for people with neurodevelopmental disabilities (NDD).

Methods: Prior to the development of IIAM version 1.0, households with NDD were selected to participate in a focus group. Respondents (n = 7) were parents of children with NDD. Participants were asked to use a beta version for at least 2 months in day-to-day applications and to complete a questionnaire at the end of the trial.

Results: Over half (57%) of the participants found the beta version to be useful. The greatest limitation in usability was the child’s age and literacy level. All participants found the app to be visually appealing and easy to navigate. IIAM was commonly used to communicate information to caregivers, and to facilitate quality interactions between the child and others.

Conclusion: Mobile technology has become ubiquitous and has emerged as an important tool in healthcare. New applications could potentially promote accessible, cost-effective and self-managed interventions for the disability community. IIAM is a user-friendly, well-accepted and useful app for people with NDD. The focus group feedback elicited from the beta testing was used to develop the IIAM app version 1.0. However, the sample size in this initial feasibility study is small, and warrants a prospective study that evaluates the overall benefits of this app in improving quality of life and helping individuals with developmental disabilities manage their day-to-day activities.

Implications for Rehabilitation

• Mobile technology has been more ubiquitous in health care and has emerged as a tool in communicating healthcare needs.

• New applications could potentially promote accessible, cost-effective and self-managed interventions for the disability community.

• IIAM (important information about me) is a new iOS application that enables adults and children with neurodevelopmental disabilities to organize their medical records, advocate for their healthcare needs, and help overcome communication and time limitations with health professionals and caregivers.

Keywords:

• Communication
• delivery of health care
• disability
• mobile apps
• mobile health

Acknowledgements

We would like to thank Tammie Parker, Frances Tolley, Karen Cox, Jim Anders, Dr. Gary Goldstein, Dr. Michael Johnston, Eleni Kostis, Montserrat Capdevila, Peter Ball, Elaine Stashinko, and Stephen Gonce for their support and guidance.

Disclosure statement

The authors Nicole T Jiam and Dr. Alexander Hoon Jr. are co-inventors of the IIAM app. Previous prototypes have been presented to the American Academy for Cerebral Palsy and Developmental Medicine annual meeting in the form of a demonstration poster.

Funding information

Support for this work is provided by internal funding at the Kennedy Krieger Institute.