The Australian-registered charity, Crohn’s Colitis Cure (CCCure) is leading a global coalition of consumer and clinician groups to develop a world-first solution to the escalating issue of inflammatory bowel disease (IBD). It will enable personalised care centred around the person with IBD, that helps improve the quality and outcomes of clinician consultations.
People with IBD want greater control and access to their own health data and personalised information. Clinicians want increased access and reliability of data too. Making this democratisation of healthcare a reality requires a transformation in the way things are done.
CCCure’s new, cloud-based consumer app is creating this transformation. It enables accessible, personalised care by integrating patient-reported data with clinical records to provide tailored information and support for each individual and their unique needs (e.g. nutrition, medications, side effects, research, access to clinical trials).
Third parties and commercial partners can also access this de-identified, clinical data for use in research, treatment development, regulatory submissions and finding a cure for IBD.
Crohn’s & Colitis Australia, Crohn’s & Colitis Foundation (USA), Crohn’s & Colitis UK, Crohn’s & Colitis New Zealand, and the Gastroenterological Nurses College of Australia (GENCA), have all expressed a need for this solution and are supporting its development, as well as driving its adoption in each country and beyond.
The US-based, global philanthropy organisation, The Leona M. and Harry B. Helmsley Charitable Trust, has backed CCCure’s vision with a grant to support its development. This innovation would not be possible without the grant – CCCure does not receive any government support or funding.
CCCure is now inviting consumers, including clinicians – in Australia and globally – to take part in consultations to co-design and co-build the platform to ensure it meets current and future needs.
IBD is a complex, chronic disease which currently has no curei. It requires specialist, multi-disciplinary care, has a significant impact on the health system and lifelong burden of disease on the person with IBDii. Rates of IBD are rising globally and within younger demographicsiii. IBD is expected to affect 300,000 Australians (1.5%) by 2030iv.
The challenge for IBD clinicians – in Australia and globally – lies in the complexity of the person with IBD’s multi-disciplinary care and the way their data, medical records and access to information are held by different stakeholders and systems. Essentially, there is no single, simple way for people with IBD to self-manage and carry their health data, treatment history and care program from one clinician to the next over years or decades. Also, it can take a lot of time for clinicians to source, curate and share the most personally relevant, up-to-date information for people with IBD.
“No matter how good a country’s health system may be, some of the biggest issues for people with IBD and their clinicians are access to information and navigation of care. The more inaccurate or delayed the information, the less optimal the care journey, and therefore the burden of disease remains or grows. As does the financial and time burden to all involved, including health systems and governments,” said Bill Petch, CEO of CCCure.
Clinicians and people with IBD want health data and information to be accessible across multiple systems and platforms – and to be available wherever they go. Overall, 41% of clinicians are not convinced they have timely access to reliable electronic patient records, and 35 per cent of people with IBD are concerned that their treating team do not have access to their relevant health datav.
The consultation process with clinicians will determine the final design of the consumer app, in line with IBD community needs. Many issues faced by people with IBD are already known, such as access to mental health support, dietary help and clinical trials information. This has been factored into the proposed design, before it goes to consultation.
Clinicians are a crucial part of the consultation and co-design process. CCCure believes it is important to understand their needs and ensure the app will enable them to better engage people with IBD and provide more personalised and targeted care.
This first-of-its-kind consumer app aims to empower users by democratising access to crucial health information, equipping them with knowledge that enables personalised, proactive self-care and improves clinical engagement and communication.
This will make the app stand apart from others that are available because it will link patient reported data to clinical data. This would create better understanding of a person’s needs and enable a holistic, personalised care journey. The app would be accessible via a web browser, smartphones and tablets, allowing people with IBD and their clinicians to:
Have instant, direct access to all their up-to-date personal health data, records and treatment programs; anytime, anywhere in the world, for any clinical consultations.
Have personalised, curated and trusted clinical information and resources delivered directly to them for their specific need, thereby reducing reliance on clinicians.
Communicate back and forth with their treating team via the app.
Depending on needs revealed in the upcoming consultations, the app could also integrate other health systems, data sets and even devices and wearables to ensure personalised, real-time and continuous support
“Addressing these issues could potentially reduce avoidable morbidity, minimise time out of work, and optimise care-related costs for people with IBD. For clinicians, it could support increased efficiency in consultations and create more engaged, proactive, high-value care,” said Professor Jane Andrews, Chair of CCCure and a leading gastroenterologist.
“Managing a chronic disease like IBD can be incredibly taxing – better disease management tools are urgently needed,” said Terry Felton, Program Officer at the Helmsley Charitable Trust. “This new global project has great potential to make it easier for patients and their care providers to communicate and coordinate care, and ultimately improve quality of life for the millions of people with Crohn’s disease.”
Enabling research and development
Making it easier for people with IBD to search for and receive notifications about relevant clinical trials is also expected to increase trial participation. In turn, this can lead to improved research, development and solutions. As will the ability for third parties – like researchers, developers and regulators – to access the patient data contained in the platform, which can be used by policy makers and research teams for the development of innovative programs and treatments.
The app will feature an existing Electronic Medical Record (EMR) system that allows people with IBD to self-report and share important information directly with the clinical teams and have it saved in the Clinical Quality Registry (CQR). In the future it may also link to biological data that would help with treatment decisions and personalised medicines tailored to each patient.
This unique, linked, clinical quality data set is available for third parties in their pursuit of improving care, treatment and finding a cure for IBD. All information is de-identified for privacy.
The strength of this unique data set was on show at the most recent European Crohn’s and Colitis Organisation (ECCO) congress and Digestive Disease Week (DDW) conference, where it featured in a number of abstracts. The data set will also feature in 14 approved abstracts at the AGW conference this September.
The next step
CCCure is now starting an extensive local and international consultation process.
The aim is to co-design and co-build the app to ensure it is truly patient-centric and captures the varied needs and perspectives of all people. This includes people with IBD, carers, clinicians (physicians, nurses, psychologists, dietitians, surgeons, radiologists, paediatricians, pharmacists), researchers and relevant organisations (including peak consumer bodies).
People and organisations who would like to be part of the consultation process can contact info@c-c-cure.org. The consumer app is expected to be ready for pilot testing in 2025.
