Interview with the ECCO Global Taskforce

Fabián Juliao-Baños: This is a crucial aspect of IBD patient care. First, I believe that governments around the world must adopt public policies for IBD that guarantee priority care for these patients. There must be no bureaucratic hurdles that delay timely care and management, as well as universal treatment coverage, including small molecules and biologic therapies, and within these, biosimilars, to reduce costs.

To guarantee this, it is necessary to have national registries and to understand the reality of IBD in each country. Care centres need to be established in various cities to ensure coverage of each country's territory, thereby reducing travel distances, and to guarantee comprehensive and holistic management of patients by multidisciplinary teams that include not only physicians but also nurses, nutritionists and psychologists. Additionally, we should utilise more economical monitoring techniques such as intestinal ultrasound and faecal calprotectin testing and implement telemedicine for care in rural areas and marginalised populations.

It is important to invest in medical education at all levels, starting with primary care physicians throughout the country, to reduce diagnostic delays and ensure timely treatment. In addition, it is a priority to educate and train gastroenterologists in IBD; in Latin America, we only have two centres in two countries where this formal training can be provided. Moreover, it is necessary for research centres in different countries to participate in clinical trials with our patients and to give them access to new treatments. In this regard, I believe that Latin America is underrepresented in global clinical trials.

Finally, I believe that countries should have diagnostic and management guidelines for both Ulcerative Colitis and Crohn's Disease which are adapted to their national context, taking into account the availability and cost of medications, and that these guidelines should be disseminated through gastroenterology associations and national IBD groups so that they are known to all medical communities. Similarly, it is important to have direct contact with patient associations in all countries, exchanging ideas with the aim of closing gaps in care and ensuring that no patient is left without treatment, thus guaranteeing a fair and equitable present and future for individuals with IBD.

Shu Chen Wei: Patients with complex or rare inflammatory conditions face significant challenges across clinical, psychosocial and systemic domains. Clinically, delayed diagnosis and misdiagnosis are common because of limited awareness and inadequate diagnostic tools. Even after diagnosis, treatment options remain inadequate, with only 30%–40% of patients responding effectively, leaving many with persistent, refractory disease. The absence of reliable predictive biomarkers further complicates care, making it difficult to anticipate disease progression or tailor therapies. Additionally, current treatments often fail to address “invisible” yet debilitating symptoms such as fatigue and chronic pain.

Beyond physical health, the psychosocial burden is substantial. High rates of anxiety and depression—affecting up to 74% of patients—highlight the lack of integrated mental health support. The unpredictable nature of disease flares creates ongoing stress, limiting patients’ ability to plan daily activities or long-term goals. The condition's invisible symptoms contribute to stigma, leading to social isolation and a reluctance to disclose it.

Systemic barriers further exacerbate these challenges. Care is often fragmented, with poor coordination among specialists and primary providers. Financial strain is also significant, particularly in countries with reimbursement limitations, driven by expensive therapies and reduced work capacity.

Communication and education gaps persist. Patients report a lack of involvement in treatment decisions and a need for clearer and more transparent information about their medical condition. Worries about the treatment side effects are a common issue, often causing patients to discontinue their treatment and resulting in worse outcomes. Greater emphasis on shared decision-making and validation of patient experiences is essential in order to improve overall care and quality of life.

Manasi Agrawal: A global taskforce, by collaborating with colleagues across countries and regions, can map out the resources and limitations in different regions that influence access to healthcare. We can learn from each other and develop creative solutions to provide contextualised care that takes into account differences in access to healthcare, cultural factors, infrastructure and policy across diverse regions. In so doing, we can improve early diagnosis and ensure timely access to IBD treatment.

Jie Chen: The first and most fundamental step in global coordination is to establish an equitable and mutually beneficial dialogue platform where the needs and concerns of IBD patients from all regions can be fully heard and respected. The ECCO Global Taskforce is precisely the platform entrusted with this mission. It should serve not only as a forum for academic exchange but also as a hub for building consensus and aligning actions. On this platform, we can achieve several key synergies:

First, as a taskforce, we will contribute to a globally shared, standardised data platform by helping to integrate epidemiological data, genomic information, clinical outcomes and biobank resources. This will help to reduce duplicative research and improve the efficiency of resource utilisation, and will be particularly important for the study of rare IBD subtypes or difficult-to-treat conditions.

Second, we can help facilitate the development and localisation of clinical standards through a global–local network. By actively participating in the formulation of international guidelines/consensus, we help set the global benchmark. Simultaneously, we promote these international standards are effectively "localised" and implemented. This dual involvement allows us to harmonise research agendas while ensuring that emerging therapies are validated and promoted across different ethnic groups and healthcare systems, thereby accelerating evidence generation.

Third, we can actively promote partnerships by bringing together academic institutions, companies, patient organisations and philanthropic foundations. These partnerships can help co-fund high-risk, high-potential early-stage research and foster an "open innovation" mechanism. This will enable rapid exchange of information, open discussion and cross fertilisation of experiences with new treatments as well as ideas for novel potentially curative approaches, ultimately leading to the formation of an efficient pipeline from bench to bedside.

Only within such a trusted, transparent and action-oriented global framework can we truly break down silos and pool scattered research efforts into a united force to overcome IBD.

Vineet Ahuja: The European Crohn’s and Colitis Organisation has formally established a dedicated taskforce to expand its reach beyond Europe, targeting all continents. As Inflammatory Bowel Disease ceases to be a strictly "Western" condition and rises in industrialising nations, this initiative will serve as the international arm of ECCO and its REACH strategy. The taskforce’s primary mission could be to act as a global equaliser, ensuring that medical science—rather than geography—dictates a patient's quality of life. 

The taskforce could focus on many objectives unified by the thematic thread of “bridging the care gap”. This could be in form of:

1. Standardisation of global guidelines: Adapting European best practices so that they are medically sound yet practical for regions with limited resources. Rather than just telling other countries what to do, expect the Taskforce to work on adapted guidelines that take local resource constraints into consideration.
2. Resource adaptation: Formulating mechanisms and strategies so that patients in low- to middle-income countries have a pathway to the same "top-down" therapy strategies (early intensive treatment) that are now becoming standard in the West.
3. Localised science through partnerships: Focusing research on how environmental factors, local diets and genetics in different global regions affect the progression of IBD. Projects must involve a collaboration between an ECCO Member centre (Europe) and a non-ECCO centre.
4. Digital democracy: Expanding the e-Learning Platform to be more accessible to healthcare providers and available in different languages.
5. Dissemination of best practices: Taking the high-level findings from the ECCO Congress (like the 2026 Stockholm insights on infection-related IBD risks) and translating them into actionable medical education for physicians globally.
6. Gap identification: Releasing reports (via the E-QUALITY Survey) that identify where global care falls short of ECCO Guidelines—whether that’s lack of access to biologics, MDTs (multidisciplinary teams) or diagnostic tools like MRI or ultrasound.
7. Outreach: Establishing "Global Friends" seats to ensure regional diversity in decision-making.
8. Sustainability: Promoting cost-effective monitoring and "greener" gastrointestinal practices.
9. Advocacy: Reducing the stigma of IBD in emerging markets where the disease is often misdiagnosed as a simple infection.

Ida Hilmi: Shared decision-making is an important concept in ensuring the best care for our patients but its implementation remains inconsistent across many healthcare systems. The barriers are multifactorial, from limited health literacy and time constraints in busy clinical settings to deeply ingrained sociocultural norms, where there remains a paternalistic model of care. In Asia, for example, this disconnect is further compounded by cultural beliefs, stigma and misconceptions surrounding disease and its treatment. For instance, a study from our centre [1] found that a significant number of patients refused surgery due to fear of having a stoma, leading to a higher rate of emergency surgeries and unfortunately in some cases, death. This highlights a critical gap—not in therapeutic availability, but in alignment between medical recommendations and patient beliefs.

Therefore, it is essential to actively elicit and integrate patient perspectives into decision-making. While some priorities—such as symptom relief and cost—are readily apparent, others are more nuanced and often under-recognised, particularly in emerging IBD populations. These include:

• Fear and stigma surrounding surgery, driven by cultural narratives, misinformation and limited exposure to positive surgical outcomes
• Dietary uncertainty, with patients frequently relying on anecdotal or culturally influenced restrictions rather than evidence-based guidance
• Fatigue, a pervasive and debilitating symptom that is often underappreciated despite its major impact on daily functioning
• Psychosocial burden, including concerns about employability, social roles and long-term independence

These dimensions are not consistently captured in routine clinical encounters and more deliberate and structured approaches are required to uncover them.

Strategies for this purpose include:

• Digital platforms and online surveys
  These allow rapid, large-scale capture of patient experiences across diverse geographic regions and are particularly valuable in emerging IBD populations. They can identify unmet needs, treatment preferences and cultural nuances that may not be visible in clinic-based cohorts.
• Patient support groups and advocacy networks
  These provide qualitative insights into lived experiences, including stigma, healthcare navigation challenges and treatment expectations. Importantly, they also serve as platforms where patients are able to contribute to guideline development, educational materials and research priorities.
• Patient-reported outcome measures (PROMs)
  Embedding PROMs into routine care ensures that patient perspectives are continuously integrated into clinical decision-making.
• Inclusion of patient representatives in guideline panels and research consortia
  Patient voices should actively shape endpoints, trial design and policy recommendations—ensuring relevance across different healthcare settings, particularly in low- and middle-income countries.
• Use of real-world data and registries
  National and regional IBD registries that incorporate patient-reported data can provide powerful insights into long-term outcomes, treatment burden and disparities in access.

Ultimately, integrating patient voices represents a shift towards a more balanced and collaborative model of care. When patients feel heard and their priorities are reflected in decision-making, this fosters greater trust, improves treatment adherence and strengthens the therapeutic relationship.

In the global context, particularly in regions where IBD is still evolving, such an approach is critical to ensure that advances in therapeutics are matched by care models that are equitable, culturally sensitive and aligned with what truly matters to patients.

Reference

1. Rajaram RB, Hilmi IN, Roslani AC. Low acceptance of surgery results in high morbidity and mortality among Asian patients with inflammatory bowel disease. Dis Colon Rectum 2020;63:415–7.

Rupert Leong: In IBD, education and awareness matter because patients do better when disease is recognised early, understood properly and treated proactively. Campaigns should target both the public and healthcare professionals. They can shorten diagnostic delay, reduce stigma around bowel symptoms, improve adherence and reinforce that modern IBD care aims for objective control of inflammation, not just temporary symptom relief.

Paulo Kotze: International collaboration in IBD care is the only way to meaningfully accelerate progress in outcomes, equity, and innovation throughout the globe. A first step is the development of harmonized, multinational registries and data platforms. Initiatives led by organizations such as ECCO have already demonstrated that standardized data collection (for example, uniform definitions of outcomes) enables robust cross-region comparisons. Expanding these into robust international data networks can address privacy concerns while enabling large-scale real-world evidence generation. Secondly, regulatory and ethical alignment is challenging, but essential. Differences in data protection laws often slow collaboration. Establishing international regulatory models, with common consent structures, allows datasets to be shared or queried safely. Additionally, bidirectional knowledge exchange should be prioritized. High-resource centers can support training, infrastructure development, and research mentorship in low- and middle-income countries, while also learning from diverse disease phenotypes and management strategies in these regions. Structured fellowships, virtual case conferences, and global tumor board–style IBD meetings are practical mechanisms. Moreover, standardized use of guidelines can also support this initiative. The the field in research and clinical care can move forward truly global, evidence-based IBD care.

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