DIVA - Data Insights for Added therapeutic VAlue
DIVA is EFCCA’s new evidence-based methodology to identify and address the real, unmet needs of people living with IBD through the analysis of patient experience data.
What is DIVA?
EFCCA´s new working methodology aims to identify and address the real needs of patients with Crohn’s disease and Ulcerative Colitis, also collectively known as Inflammatory Bowel Disease (IBD).
DIVA uses publicly available data as well as internal EFCCA data to analyse and interpret the unmet needs of IBD patient communities.
DIVA provides harmonised opinions and recommendations to stakeholders such as regulators, policy makers, pharmaceutical industries and healthcare professionals.
What is new about DIVA?
DIVA promotes the generation, collection and use of evidence-based patient experience data that allows EFCCA and its members to explore patient unmet needs based on scientific data and to propose new initiatives and campaigns to find meaningful solutions.
For instance, EFCCA and members are regularly invited to patient councils/advisory boards or similar meetings with stakeholders aimed at identifying the unmet needs of the IBD patient community. Through DIVA, EFCCA wants to ensure that inputs at such meetings are based on the wealth of scientific data already available and/or - in case of lack of data - EFCCA aims to promote such generation of data.
DIVA's potential is huge, and EFCCA is working closely with its members to fine-tune it and its pilot platform and define priority areas of usage for members.
The new platform will be a useful and valuable tool for patient representatives, providing a one-stop shop for information and resources on Inflammatory Bowel Disease.
Roberto Saldaña, EFCCA Coordinator of Innovation and Patient Engagement
What is included in DIVA?
DIVA is a platform that provides in-depth information on IBD, sourced from publicly available and trusted databases. It gathers insights into the general condition of patients, the frequency and impact of symptoms, and ongoing initiatives aimed at improving our understanding of these diseases and their treatment.
An intelligent assistant, DIVA_ai, helps explore and interpret data from:
Internal sources, such as EFCCA publications (journals, congresses, and reports).
External sources, including medical guidelines and official databases.
EFCCA actively promotes the inclusion of data from research conducted by its members in close collaboration with the organisation. This data is presented in a user-friendly format, making it accessible and easy to interpret. All data will include references to its original source.
By using DIVA, EFCCA and its members will gain a more comprehensive understanding of the patient landscape, enabling them to better identify priorities for improving the quality of life for people living with IBD.
DIVA will also enhance the quality of support that EFCCA and its members provide to researchers, clinicians, pharmaceutical companies, and public authorities—ensuring they receive valuable patient feedback to inform better decision-making for the IBD community.
DIVA Tools
We are equipping our members with professional tools to strengthen their advocacy efforts and leverage the high-level expertise within our community.
ChatIBD for Dummies
A practical guide to ChatIBD, an advanced, AI-powered, multilingual assistant designed for patient representatives. ChatIBD provides quick and accurate answers to questions about Inflammatory Bowel Disease (IBD), drawing on the latest scientific research and community resources.
With this innovative tool, EFCCA and its members can deliver high-quality support and information, reinforcing their leadership within the IBD community.
Guidebook for Patients to Review Clinical Trial Protocols
EFCCA promotes patient engagement in clinical trials through its advocacy guidebook, equipping patient representatives with the knowledge and tools to navigate drug research and critically assess trial protocols.
Guidebook on Health Technology Assessment (HTA)
This Guidebook is a comprehensive resource designed to explain Health Technology Assessment (HTA) processes and terminology, equipping our patient community with the knowledge and tools needed to participate in healthcare decision-making.
By understanding how HTA works, the evidence it requires, and its key evaluation criteria, patients can contribute their unique perspectives, preferences, and experiences. This ensures that HTA decisions better reflect patient needs and priorities.
The launch of this guidebook comes at a crucial time, as healthcare decision-making is evolving rapidly, with patient perspectives playing an increasingly significant role.
DIVA Academy
Unlocking the Power of Data Insights for Added Therapeutic Value
What is DIVA Academy?
DIVA Academy is a comprehensive program designed to train EFCCA delegates with the necessary skills and knowledge to tackle the full potential of DIVA (Data Insights for Added Therapeutic Value).
This innovative tool is set to transform the way we access and analyse data, enabling us to make evidence-based decisions that benefit our IBD community.
DIVA Academy has been designed to offer a hands-on learning experience, equipping you with the skills to navigate DIVA’s features, functionalities, and research filters effectively. Whether or not you have prior experience with software, this course will provide you with the necessary tools to gain valuable insights from the wealth of data available within DIVA.
“With DIVA, patient associations have access to valuable data and resources to support their advocacy efforts.”
Salvo Leone, EFCCA Chairperson
What will I be able to do at the end of the training?
Throughout the training, you will gain a deep understanding of DIVA's capabilities and learn how to access and use national data.
You will discover how to:
formulate evidence-based opinions
Data available on DIVA come from EFCCA research, national data issued from publicly available database (such as EMA clinical trial repository), or national surveys results provided by you;
identify unmet needs
Recognize areas with inadequate treatment or resources from healthcare professionals. These areas indicate the need for additional efforts and resources, which can be communicated to policymakers for action
prioritize initiatives
prioritize initiatives: data can help you to explore the possibilities of collaborating with academic and commercial stakeholders to new and innovative research.
As you progress through the course, you will gain proficiency in requesting international comparisons and analyses. You will also develop a clear understanding of mapping and data contribution, playing an active role in expanding DIVA’s data by facilitating access to national public databases.
We invite you to join us on this transformative journey as we harness the power of data through the DIVA Academy. Together, we can unlock DIVA’s full potential to drive positive change and improve outcomes for our IBD community.
We look forward to welcoming you and facilitating an engaging learning experience!
How to access DIVA?
Currently DIVA’s platform can be accessed by EFCCA members only. Other stakeholders can receive reports on request. DIVA is still in the pilot phase, EFCCA and its members will further disicuss criteria for partial access to the DIVA platform of non-member stakeholders.
For more info please write to: