Cochrane Colloquium 2026

YHEC is excited to join global experts in evidence synthesis at the Cochrane Colloquium 2026 in Kraków. Two staff members are representing YHEC this year, including Tom Macmillan, Project Director in the review and evidence synthesis service. If you would like to arrange a meeting with our team at Cochrane Colloquium, please contact us. 

Workshop

We are delighted to be leading an interactive workshop at this year’s event! Charlotte Ahmadu will be hosting a workshop on patient and public involvement in rare disease research. Find out more information below:

Co-designing discovery: Patients as partners in rare disease research

• Date: Thursday 10 December 2026
• Time: 11:30 AM to 12:30 PM
• Location: Chamber Hall (S3B), ICE Kraków

Workshop background

Patient access to therapeutic interventions for rare diseases is frequently obstructed by evidence gaps, challenging health technology assessment requirements, and economic and access barriers. Early and continued patient and public involvement (PPI) can be used to navigate the complexities of rare disease research during drug development to secure market access. In 2025, the World Health Organization (WHO) established a new global standard for PPI in rare disease research, with the intention of changing PPI from a tokenistic ‘fix-it’ postscript to a core part of evidence generation in rare diseases, encouraging researchers to co-design clinical research with patients acting as active, equal ‘knowledge creators’ rather than solely as research subjects.

Our objective is to encourage workshop participants to explore the barriers people with rare disease face in engaging in clinical research and to enable them to consider sustainable PPI solutions for clinical research, while addressing ethical and equitable implications.

Workshop approach

Our workshop will use the ‘double-diamond’ structure to engage interactively through group activities and discussions, to better understand the challenges people with rare diseases face when participating in research.

• The workshop will begin with an interactive welcome session to gauge baseline perspectives on PPI.
• There will follow a lightning talk on the critical intersection between the WHO 2025 resolution, clinical research, and the central role of the patient.
• Next, we will divide attendees into facilitated breakout groups with their ‘role swap’ challenge instructions and stationery. Participants will be tasked to first adopt the patient perspective to identify areas where people with rare diseases might face challenges in a clinical trial. Next, participants will suggest solutions to successfully integrate PPI into the study, to demonstrate how to untangle the practical complexities of co-designing clinical research.
• We will then open the floor for individual groups to present their identified challenges and resolutions.
• Following the presentations, we will revisit baseline perspectives to understand if there has been a shift in sentiment towards PPI integration in clinical research.
• The workshop will conclude with a wider conversation focused on the ethical and equitable implications of PPI solutions.

To find out more about the working group, contact us. For information about attending, please visit the Cochrane Colloquium 2026 website.