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

N. T. Jiam, A. H. Hoon, C. F. Hostetter, M. M. Khare

Research output: Contribution to journalArticle

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 RehabilitationMobile 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.

Original languageEnglish (US)
Pages (from-to)1-6
Number of pages6
JournalDisability and Rehabilitation: Assistive Technology
DOIs
StateAccepted/In press - Jun 23 2016

Fingerprint

Delivery of Health Care
Disabled Children
Disabled Persons
Focus Groups
Caregivers
Technology
Costs and Cost Analysis
Developmental Disabilities
Feasibility Studies
Medical Records
Communication
Quality of Life
Prospective Studies
Health
Costs
Health care
Feedback
Testing

Keywords

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

ASJC Scopus subject areas

  • Physical Therapy, Sports Therapy and Rehabilitation
  • Orthopedics and Sports Medicine
  • Biomedical Engineering
  • Speech and Hearing
  • Rehabilitation

Cite this

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title = "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 RehabilitationMobile 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.",
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