Related Experiment Video
Updated: Jul 12, 2025
E-Patient Counseling Trial E-PACO: Computer Based Education versus Nurse Counseling for Patients to Prepare for Colonoscopy
Published on: August 1, 2019
Co-design and Consultation Ensure Consumer Needs Are Met: Building an eHealth Platform for Children with Inflammatory
Joseph Louis Pipicella1,2,3, Angharad Vernon-Roberts4, Shoma Dutt5,6
1Medicine & Health (South Western Sydney Clinical School), University of New South Wales, Sydney, NSW, Australia. j.pipicella@unsw.edu.au.
Insights
Consumer input was crucial in enhancing the Crohn's Colitis Care eHealth system for pediatric inflammatory bowel disease (IBD) patients. Key features like quality of life and mental health support were prioritized, ensuring lifelong care and smoother transitions.
Area of Science:
- eHealth
- Pediatric Inflammatory Bowel Disease (IBD)
- Consumer Health Informatics
Background:
- Crohn's Colitis Care is an existing eHealth system for adult inflammatory bowel disease (IBD) management.
- The system lacked pediatric functionality, hindering lifelong record-keeping and effective transition of care for young patients.
Purpose of the Study:
- To describe and evaluate a consensus-driven method for incorporating pediatric-specific needs into the Crohn's Colitis Care system.
- To ensure the enhanced eHealth system meets the requirements of children with IBD and their families.
Main Methods:
- A clinician consensus group developed pediatric functionality, using a two-round voting process and the content validity index.
- Children with IBD and their parents voted on proposed non-clinical topics for inclusion.
Main Results:
- 189 participants (38 clinicians, 32 children with IBD, 119 parents) were consulted.
- Strong agreement was reached on incorporating quality of life, mental health, self-management, and transition readiness features.
- Consumers and clinicians differed on including general IBD facts and cost-related features, with consumers prioritizing direct care functions like asking the treating team questions.
Conclusions:
- Consumer co-design and consultation are vital for developing eHealth systems that address diverse user needs.
- The process highlighted differing perspectives between consumers and clinicians, leading to a more inclusive and effective Crohn's Colitis Care system.
Background:
Crohn's Colitis Care is an adult inflammatory bowel disease eHealth system. Crohn's Colitis Care required additional pediatric functionality to enable life-long records and mitigate transition inadequacies.
Aim:
This study describes and evaluates a consensus method developed to ensure consumer needs were met.
Methods:
Pediatric-specific functionality and associated resources considered important for inclusion were developed by a clinician consensus group. This group was divided into thematic subgroups and underwent two voting rounds. The content validity index was used to determine items reaching consensus. Children with inflammatory bowel disease and their parents were later shown a descriptive list of non-clinical inclusion topics proposed by the consensus group, and asked to vote on whether topic-related functionality and resources should be included.
Results:
The consensus process consulted 189 people in total (38 clinicians, 32 children with inflammatory bowel disease and 119 parents). There was agreement across all groups to incorporate functionality and resources pertaining to quality of life, mental health, self-management, and transition readiness; however, divergence was seen for general inflammatory bowel disease facts, your inflammatory bowel disease history, and satisfaction. Cost saw the greatest disparity, being less supported by consumers compared to clinicians. Over 75% of consumers agreed it would be okay for appointments to take longer for survey completion, and > 90% thought Crohn's Colitis Care should allow consumers to ask their treating team questions.
Conclusions:
Widespread consumer co-design and consultation were important in unveiling differing perspectives to ensure Crohn's Colitis Care was built to support both consumer and clinician perspectives. Consumers collaborate to create a list of functionality and resources to be included in software (left), influencing the final product build (right).
Related Concept Videos
01:30Inflammatory Bowel Disease III: Diagnostic Studies and Management I-Nutritional Therapy
Diagnostic studies
A colonoscopy is the definitive screening test, distinguishing ulcerative colitis from other colon diseases with similar symptoms. During a colonoscopy test, inflamed mucosa with exudate ulcerations can be observed, and biopsies are taken to determine the histologic characteristics of the...
01:30Inflammatory Bowel Disease II: Crohn's Disease
Inflammatory bowel disease, commonly known as IBD, refers to a collection of disorders that lead to persistent inflammation of the gastrointestinal tract. The two types of IBD are ulcerative colitis, which impacts the colon, and Crohn's disease, which can involve any part of the gastrointestinal segment.
Crohn's disease
Crohn's disease is a chronic, systemic inflammatory bowel disease (IBD) that predominantly affects the gastrointestinal tract. It is marked by...
01:21Inflammatory Bowel Disease V: Surgical Management
Here are some common surgical interventions for IBD:
01:29Inflammatory Bowel Disease IV: Pharmacological Management
Pharmacologic...
01:27Inflammatory Bowel Disease I: Ulcerative Colitis
Inflammatory bowel disease, or IBD, encompasses a group of disorders characterized by chronic inflammation or ulceration of the gastrointestinal tract.
Risk Factors
The exact cause of IBD remains unclear, although it is believed to be due to a mix of genetic, environmental, microbial, and immune factors. Genetic factors are significant in determining susceptibility to IBD, with family history being a critical risk factor. Individuals with a first-degree relative who has IBD are at...
01:30Irritable Bowel Syndrome III: Medical and Nursing Management