Personalising IBD management with EMR data

After opening up its specialty database to researchers globally, the Australian not-for-profit organisation Crohn’s Colitis Cure is now working to reach more people by developing and implementing a mobile application for individuals dealing with inflammatory bowel disease. 

Early this year, CCCure launched subscription-based access to its IBD database – said to be one of the largest in the world – covering real-time patient-reported and clinical data on Crohn's disease, ulcerative colitis, and IBD-undetermined.

Several months later, the organisation disclosed it is creating a mobile app for IBD patients and it seeks consumers and clinicians to help in co-designing and co-developing the technology.

Mobihealth News caught up with Bill Petch, CEO of CCCure, to discuss its upcoming IBD consumer app and how it will differ from those already in the market.  

Q. Several IBD management apps already exist in the market. How will your planned consumer app set itself apart from them? What value will it offer to different stakeholders?

A. There have been a number of attempts at IBD-specific apps, plus a range of health apps that address different functional elements. Prior to embarking upon this project, we did a considerable amount of research to understand the current market and whether it is meeting consumer needs. What currently exists offer generic information or limited support and are not truly patient-centric. They cannot offer a truly personalised care journey as they are not linked to real-time patient clinical data. As such, what they do is fragment care and fragment data which ultimately does not lead to high-value care.

This is what differentiates our app from all other apps on the market. As far we know, ours is a world first in terms of its scope and scale. The CCCare app will link patient-reported data with clinical data to create a truly personalised and holistic care experience. This means:

• There will be no need for multiple apps;

• There will be integration of existing information and resources; 

• Tailoring these resources directly to meet consumer needs, especially in such areas as mental health and diet where we know there are significant gaps; and 

• A constantly evolving resource following the consumer on their journey.

This app is currently in the design phase and will likely bring the following value to each stakeholder:

• For patients: The app will make their health data fully portable, allowing them to access and share it with clinical teams globally while also being able to monitor their own progress. It will offer personalised, dynamic care plans that adapt based on their unique health data, lifestyle, and treatment. As it integrates with clinical management systems, it will provide real-time symptom tracking with alerts. Additionally, the app will provide mental health support and ensure equitable access to specialist care for patients, regardless of their location or background.

• For clinicians: The app will provide them access to patient-reported and clinical data, which will enable them to make more informed, data-driven decisions. It will also streamline communication between them and their patients, enhancing engagement while reducing administrative tasks. Meanwhile, a future feature of the app, predictive analytics, will help prevent potential flares.

• For researchers: For the first time, a mobile app will provide researchers with a dynamic collection of structured real-world, de-identified data from diverse populations in one place. It will also streamline clinical trial recruitment by allowing researchers to target specific patient profiles and empower patients to choose which trials to join. Offering AI-driven insights, the app will also assist in identifying new treatment strategies and hasten the integration of innovations into routine care.

The CCCare app will be codesigned with stakeholders globally so it will be fit for purpose and give them what they actually want and not what developers think they want.

Q. How exactly will personalised information support IBD management? How does this ensure the right and critical information are effectively relayed to users?

A. Our app will be able to offer dynamic care plans that adjust in real-time based on individual symptom tracking, lifestyle data (such as diet and exercise), and clinical information like medication adherence and test results. This ensures that patients receive personalised, actionable advice tailored to their current health status. Access to real-time data will also empower them to be more proactive in their care.

The app will continuously generate data-driven insights, such as symptom trends, treatment effectiveness, and the impact of lifestyle choices. Patients will be empowered to quickly grasp what's working and what requires attention. In the future, incorporating genetic and microbial data will help further refine treatment plans.

By delivering context-specific notifications, the app will ensure that patients receive relevant, timely alerts. For instance, if symptoms worsen or a medication dose is missed, the app will provide specific actions to take. Personalised educational resources will also be shared, adapting to the patient's disease stage – whether newly diagnosed or managing long-term treatment.

Critical data sharing with providers will enable clinicians to receive updates on the patient’s self-reported health data, enabling them to intervene early when necessary. For example, if predictive markers of a flare are detected, clinicians can take preemptive action to potentially prevent hospitalisation.

The app will foster data-driven feedback loops, offering patients ongoing feedback on how their treatments and lifestyle choices impact their symptoms. It will highlight positive changes like how dietary adjustments improve symptom management.

Finally, the app will integrate personalised mental health support, offering tools to monitor emotional well-being and suggest interventions. This ensures holistic care, addressing both physical and emotional aspects of IBD management.

Q. How will you ensure the security of access to both patient-reported data and EMR data that your upcoming app will provide? Can you specify measures/protocols being planned for this?

A. CCCare already has a comprehensive privacy and security protocol in place. 

As the app will be available globally it will be compliant with ISO 27001, a globally recognised standard for information security management systems. This will add a layer of trust and security. 

Q. Where do you intend to pilot the consumer app once it is developed – will it be tested first in Australia perhaps?

A. Yes, and New Zealand, as both are countries where CCCare is currently used. However, given the app will not be limited to patients whose sites use CCCare, we intend to pilot it in countries of the consumer organisations who are partnering with us on this endeavour, such as the United States and the United Kingdom.

Q. Can you share your strategy for introducing this solution to the market?

A. CCCare already has a strong clinical and patient network to introduce this into already. We are also working with consumer organisations globally. As the app is being designed to also address their needs for engaging with consumers, it will be made available to them and provide a platform for them to engage.

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Bill's responses have been edited for brevity's sake.