Crohn’s Colitis Care (CCCare): bespoke cloud-based clinical management software for inflammatory bowel disease

Abstract

Background

Adherence to evidence-based management is variable in inflammatory bowel disease (IBD), which leads to worse patient outcomes and higher healthcare utilization. Solutions include electronic systems to enhance care, but these have often been limited by lack of clinician design input, poor usability, and low perceived value. A cloud-based IBD-specific clinical management software – ‘Crohn’s Colitis Care’ (CCCare) was developed by Australia and New Zealand Inflammatory Bowel Disease Consortium clinicians and software developers to improve this.

Methods

CCCare captures patient-reported disease activity and medical assessment, medication monitoring, cancer screening, preventative health, and facilitates communication with the IBD team and referring doctor. De-identified longitudinal data are stored separately in a clinical quality registry for research. CCCare was tested for feasibility and usability in routine clinical settings at two large Australian hospitals. Users’ experience was evaluated with System Usability Scale (SUS). Value to clinicians and patients was assessed by qualitative feedback. Security was assessed by penetration testing.

Results

Users (n = 13; doctors, nurses, patients) reported good usability and learnability (mean SUS score 75 (range 50–95), sub-scores were 77 (50–94) and 68 (38–100), respectively). Patients reported better communication with clinical team and greater ability to track disease. Clinicians highlighted structured management plans, medication adherence, and centralised data repository as positive features. Penetration testing was passed successfully.

Conclusions

Initial evaluation demonstrates CCCare is usable, secure, and valued in clinical use. It is designed to measure outcomes of clinical care, including efficacy, quality, cost, and complications for individuals, and to audit these at hospital and national level.

Keywords:

• Quality of care
• eHealth
• telemedicine
• inflammatory bowel disease
• clinical quality registry
• patient reported outcomes

Acknowledgements

We gratefully acknowledge the assistance of medical and nursing staff of all members of the ANZIBDC for their contribution towards this project. We would like to thank all the patients who have been involved in this work. We would also like to thank Crohn’s Colitis Cure charity and all the donations (disclosed) that have supported this work.

Disclosure statement

Jakob Begun has been on advisory boards and been a speaker at AbbVie, Janssen, Pfizer, Shire, Takeda, Ferring, Celgene, Emerge Health and Gilead; and received research support from Janssen, AbbVie, Ferring. Susan Connor has been on advisory boards, been a speaker and received research and/or educational support from AbbVie, Janssen, Pfizer, Shire, Takeda, Ferring, MSD, Vifor, Celgene, Orphan, Gilead, Celltrion, Aspen. Alexandra Sechi has received research and/or educational support from AbbVie, Janssen, Pfizer, Ferring, Orphan. Graham Radford-Smith has been on advisory boards and been a speaker at AbbVie, Janssen, Pfizer, Shire, Takeda, Ferring, Novartis; and received research support from Janssen. Jane Andrews has been on advisory boards, been a speaker and received research and/or educational support from AbbVie, Allergan, Anatara, Bayer, Celgene, Celltrion, Ferring, Gilead, Hospira, Immunic, Janssen, MSD, Nestle, Pfizer, Sandoz, Shire, Takeda, Vifor, Novartis. Other authors report no conflict of interest.

Additional information

Funding

This project was supported by Crohn's Colitis Cure charity, via donations from the public and from pharmaceutical companies: AbbVie Pharmaceuticals Australia; Shire Australia; Pfizer Australia and Takeda Pharmaceuticals Australia; and projects grants from Merck Sharp & Dohme and Vifor Pharma.