Crohn's Colitis Cure

Real-World Evidence– A Game Changer for Access, Affordability & Accountability The recent tit for tat with Pharma and PBAC ( Health Industry Hub April 15, PBAC issues criticism of Pharma Industry reimbursement submissions)  highlights an issue many of us recurrently see firsthand: a system hampered by incomplete data, driving repeated submissions, and delayed access to life-changing medicines. But it doesn’t have to be this way.   Innovative Care platforms like CCare are already solving part of the problem—capturing real-world data – during care - at scale, in a consistent, high-quality way across Australia’s network of leading IBD Services. This kind of infrastructure isn’t just for academic interest—it’s the missing link in both pre- and post-market evaluation, helping us understand how medicines actually perform in the real world, not just in trials.   Imagine if exemplar platforms like CCCare were resourced nationally to link real-world data to reimbursement decisions… Imagine if industry collaborated earlier and more often with groups like CCCure to strengthen submissions… Imagine if government funded Clinical Quality Registries (CQRs) properly and helped embed national clinical standards across diseases where there is unacceptable Burden of Disease to drive equity in care and consistency in access… The outcome? ✔️ Smarter, faster reimbursement decisions ✔️ Better targeting of therapies to patients who benefit most ✔️ A more equitable, affordable, and efficient healthcare system It’s time we stop seeing RWE as optional and start investing in it as core national health infrastructure. Let’s build the system we all want to see. #HealthcareInnovation #RealWorldEvidence #CCCare #HealthEquity #MarketAccess #MedTech #Pharma #PBAC #IBD #ClinicalRegistries #ValueBasedCare #DigitalHealth #PolicyReform  Professor Jane M Andrews

The IBD State of the Nation report has allowed us all to understand the scope of avoidable challenges faced by people with IBD - we must prioritise finding a better approach to IBD care provision. At last week's Superstars of IBD Conference in Queenstown, NZ, our Board Chair Professor Jane M Andrews spoke about the HOW of care provision, rather than the WHAT. Applying digital technology, thinking outside the box, and consumer empowerment is the way! While there, we were grateful to catch up with many of our collaborators including Richard Gearry, and take in the breathtaking beauty of NZ. Many thanks to the New Zealand Society of Gastroenterology for hosting this fantastic event and progressing this conversation.

We are pleased to share Professor Jane M Andrews, Susan Connor and Dr. Neda Karimi's recent publication "On being on the same page: Predictors of gastroenterologist-patient misalignment in inflammatory bowel disease"! This research highlights the critical importance of aligning perspectives between clinicians and patients in managing chronic conditions like inflammatory bowel disease (IBD). Misalignment in perspective can significantly impact disease management and patient outcomes. In response to these challenges, CCCure is developing an integrated patient mobile app, aiming to transform clinician-patient communication. This tool is designed to empower patients by providing real-time health monitoring, streamlined appointment scheduling, and personalised care plans, thereby enhancing engagement, bridging communication gaps, and improving health outcomes. The app will be integrated into the CCCare clinical platform enabling patient report and clinical data to be integrated and transferred into Australia’s only IBD Clinical Quality Registry. This initiative underscores CCCure's commitment to transforming IBD care through innovative, technology-driven solutions, ultimately striving for better patient outcomes and quality of life. Read the article here! https://lnkd.in/g-qFYuCi

Professor Jane M Andrews is walking the Bay of Fires in Tasmanian to raise money for IBD care and research this November along with medical and nursing colleagues from Crohn's Colitis Cure All funds raised will go towards CCCare research, audit and quality assurance activities to optimise care now and be instrumental in cure. If this resonates for you, please feel free to share the link across your networks - help us to make a difference in IBD care and working to identify a cure.

Our Board Chair Professor Jane M Andrews recently spoke at the Superstars of IBD event in Queenstown about the opportunities for better care and outcomes by concentrating more on quality and consistency of care delivery. Never a ‘sexy’ topic for a medical audience but she managed to hold their attention! Go Jane!! We hope our consumers co-care app and open data sharing will help us all do better on IBD care in A/NZ, watch this space!

As part of our commitment to the recently released IBD State of the Nation Report, we are seeking Commonwealth support for our Crohn's Colitis Care (CCCare) Clinical Quality Registry (CQR). IBD Consumers - if you’d like to show your support for the CCCare CQR, we want to hear from you! Please reach out to us at info@c-c-cure.org by Friday, March 28. Your voice matters!

The Australian Government’s commitment to increased funding for PBS medicines is, on the surface, a positive step—it improves access and affordability, two critical issues in healthcare. But let’s be clear: this comes at a significant cost to the budget, one that will ultimately be borne by taxpayers. The real issue? We’re patching up a system that’s fundamentally broken instead of fixing it. The recent IBD State of the Nation report highlights the massive waste within our healthcare system—avoidable hospitalisations, unnecessary surgeries, and inefficiencies that cost billions every year, and this is just one disease that affects 1% of the population. In our submissions to government, we have demonstrated how a small piece of funding (only $1-2 million over 2-3 years) would conservatively save over $125 million in just five years by improving disease management. This is a net saving to the budget and can make better access to medicine truly sustainable. Remember, the current announcement doesn’t mean new medicines get to patients any faster, or that people with IBD get the drug doses they need, or that red tape in access to critical IBD medications are simplified to give time back to care.   A smarter investment strategy would focus on things like: ✅ CCCare and similar CQRs – proven models that can prevent hospital admissions and improves patient outcomes. ✅ Clinical Standards – that improve consistency and quality of care and focus on keeping people well. ✅ Reducing red tape – streamlining processes that currently inflate costs without adding value and delays access. ✅ Invest in digital and data-driven care models – so the system is fit for purpose, not siloed and fragmented, meaning funding goes to interventions that deliver measurable impact.   Whilst these do not appear to create the same pre-election hype - they could! The future in health must be digital, effective, efficient and accountable. A bold government doesn’t just throw money at a growing problem—it reforms the system to make healthcare more sustainable and accessible, and that looks after everyone! At least in Crohn's and Colitis (#IBD), we have the data. We know where the waste is and where the gains are to be made for savings in morbidity, downtime for patients, and funding. The question is—who will be brave enough to act on it? #HealthcareReform #IBD #PBS #PolicyChange #SustainableHealthcare #ValueBasedCare

Not long to go now before the Early Bird Registration closes (23rd February) for the "SUPERSTARS of IBD" event in Queenstown on the 4th and 5th April this year! We will be there along with our Board Chair Professor Jane Andrews and our Programme Manager Chrissie Whitfield - are you going? @Crohn’s Colitis Cure is developing a unique co-care app to help people with IBD self manage! Make sure you come and say hello and find out all about this amazing project supported by Leona M. and Harry B. The Helmsley Charitable Trust with invaluable help from our Christchurch based tech partner Stratos Technology Partners for making this exciting new initiative possible, 

A big thank you to everyone who has participated in our Surveys and Focus Groups to develop our IBD consumer co-care app so far!  Your input has been invaluable and provided early insights. We are thrilled to see strong alignment in the key themes emerging from consumers, clinicians and caregivers - namely: 1. Symptom Tracking 2. Medication and Appointment Reminders 3. Diet and Lifestyle Guidance 4. Trusted Information on IBD  5. Community Support These insights are guiding the next stage of our journey. We’re now collaborating with our tech partner (@Stratos) and UX expert in ideation workshops to explore innovative ways to address these themes. Haven’t had your say yet? There’s still time to contribute! Jump on the survey link below—we’d love to hear from you! #IBD #HealthcareInnovation #PatientExperience #Survey #IBD #CCCare #CrohnsColitisCure CCCare Steering Survey here> https://lnkd.in/eBEbdkK5

Its #nottoolate to get involved with the #codesign #consultation for the development of our #consumerapp - we would really appreciate your insights and feedback via our #Steeringsurvey. Follow the link below or email us at info@c-c-cure.org Better still, come see us at our Crohn's Colitis Cure stand at #NZSG in Hamilton this week!