The Spanish Association Against Gastric Cancer and Gastrectomized Patients (ACCGG) has joined the IMPACTA HTA initiative to ensure that patient experience meaningfully informs decisions on access to medicines.

In collaboration with EUPATI Spain and supported by Jazz Pharmaceuticals, ACCGG has launched a structured, systematic collection of patient testimonies. The aim is clear: to transform lived experience into robust evidence that can shape health technology assessment (HTA) processes across Europe.

For people affected by gastric cancer, waiting is a constant. Diagnosis is often delayed. Treatments can radically alter how patients eat, live, and function. Even when innovative therapies such as immunotherapies or targeted treatments are developed, access can take months or years after approval. This gap carries a burden that clinical trials rarely capture: uncertainty, emotional strain, and life decisions placed on hold.

Making these realities visible is not optional. It is necessary for better, faster, and more equitable decision-making.

Since January 2025, new European legislation requires a joint clinical assessment of oncology medicines before national reimbursement decisions are made. Crucially, it creates a formal role for patient input. But participation without structure is ineffective. Decision makers require consistent, high-quality data.

IMPACTA HTA addresses this gap. Through a dedicated, open-source platform, anonymised patient testimonies are collected, analysed using artificial intelligence, and translated into actionable insights for European HTA processes. These insights do not disappear after a single consultation. They remain accessible, allowing patient evidence to inform future scientific and regulatory discussions.

Interviews are already underway. The first report, mapping the full patient journey of people living with gastric cancer in Spain, is expected later this spring.

Data collection focuses on the realities that matter most: early symptoms, time to diagnosis, treatments received, expected and achieved outcomes, and quality of life. It also captures fears, concerns, and unmet needs across different patient groups, including variations by age, sex, prognosis, tumour subtype, and biomarkers.

This level of detail is essential. The experience of living after a gastrectomy, coping with dumping syndrome, or facing social isolation due to eating difficulties cannot be reduced to clinical endpoints. These differences determine whether a new treatment or intervention delivers meaningful benefit and for whom.

IMPACTA HTA is designed to scale. It is multilingual, open-source, and owned by patient organisations. Any group can contribute. The logic is simple: more structured patient voices lead to stronger influence in decisions that determine access to care.

At DiCE, this approach reflects a broader priority. Patient experience must move from anecdote to evidence, from consultation to influence. Initiatives like IMPACTA HTA show how this can be done.

Organisations and patient groups are invited to join and help build a stronger, evidence-based patient voice in Europe.

Learn more:
www.eupati-es.org/impacta-hta
www.accgg.es
roberto.saldana@eupati-es.org
Pili.rz@gmail.com

Author:

Ruel Jacob