‡øëHŠÊ˜·³Ç Patient Organisation Forum

The ‡øëHŠÊ˜·³Ç hosts a Patient Organisation Forum for registered patient/health charities to come together with each other and pharmaceutical companies to network and learn. The Forum has a shared goal of supporting equitable access to research and innovation for UK patients.
The ‡øëHŠÊ˜·³Ç have over 70 charities that are registered to the Forum, which meets around six to eight times a year to share updates and insight into key topics that are of mutual interest. There are also opportunities to collaborate in different work undertaken by the ‡øëHŠÊ˜·³Ç throughout the year.

Patient Organisation Steering Committee
The Patient Organisation Forum is co-led by leaders from patient charities and ‡øëHŠÊ˜·³Ç members.
The Forum meetings are hybrid and optional, and generally run for 90-120 minutes and all individuals who are registered to the Forum receive invitations to the meetings and any updates on information/events helpful to charities and ‡øëHŠÊ˜·³Ç Members. Topics and speakers are planned based on requests from Charities and ‡øëHŠÊ˜·³Ç members.
Examples of topics discussed at the Forum include:
-
Working with pharmaceutical companies and charities – understanding the ‡øëHŠÊ˜·³Ç Code of Practice  and sharing good practice
-
Participating in a medicines assessment by the National Institute for Health and Care Excellence (NICE) – how to contribute, what to expect
-
Understanding the UK medicines pricing agreement
-
Patient education – supporting patient communities to understand what clinical trials are, how to take part and myth-busting
The Forum also hosts ‘Partnership Surgeries’ showcasing the partnerships between patient organisations and the pharmaceutical industry. These are an opportunity to learn and build confidence in working together.
Examples of collaboration surgeries:
-
Pfizer and Fight Bladder Cancer – developing education materials
-
Roche and Salivary Gland Cancer UK - co-producing patient resources around genomics; the why, what and how
The ‡øëHŠÊ˜·³Ç Patient Organisation Forum is open for any health charity that is seeking to work with the pharmaceutical industry and sees the value of networking with other charities.
If you choose to become a member of the Forum you will also receive any communication about any issues/opportunities ‡øëHŠÊ˜·³Ç is participating in and are relevant to Patient Organisation partners.
To join please use our Contact Form.
Current charity members of the ‡øëHŠÊ˜·³Ç Patient Organisation Forum

- &

The ‡øëHŠÊ˜·³Ç has produced this sourcebook to support pharmaceutical companies in working successfully and collaboratively with patients and patient organisations. We want to support relationships that are in the interests of patients and within the law and the ‡øëHŠÊ˜·³Ç Code. We also hope that the sourcebook will be helpful to patient organisations as they build partnerships with industry.

Transparency is essential when pharmaceutical companies work with patient organisations. The ‡øëHŠÊ˜·³Ç (‡øëHŠÊ˜·³Ç) Code of Practice for the Pharmaceutical Industry places requirements on industry to publish annual lists of payments to patient organisations, and we endorse this approach.

The ‡øëHŠÊ˜·³Ç has produced this sourcebook to support pharmaceutical companies, patients and patient organisations work together successfully, with relationships that are in the interests of patients and meet the standards set out in the 2021 ‡øëHŠÊ˜·³Ç Code of Practice.
Last modified: 11 March 2025
Last reviewed: 13 March 2025