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Patient-Focused Medicines Collaboration (PSM)
Strengthening equal and impactful collaboration between patient organisations and pharmaceutical companies
The Patient-Focused Medicines Collaboration (PSM) is a Dutch multi-stakeholder initiative established to strengthen equal and structural collaboration between patient organisations and pharmaceutical companies.
The initiative creates a structured and safe environment for dialogue, long-term collaboration and joint action, ensuring that the patient perspective is meaningfully embedded across the lifecycle. By fostering transparent and balanced long-term collaboration, PSM aims to contribute to a stronger basis for better medicines and better healthcare.
Lygature is providing the partnership management for this initiative, in its role as neutral broker. Content input is provided based on Lygature expertise in Patient and Public Involvement.
Project Type
Multi-stakeholder collaboration initiative
Geographical Scope
The Netherlands
Start date
January 2025
Background
Over the past years, the recognition of the importance of patient participation in healthcare innovation has grown significantly. Patients bring unique experiential knowledge that can improve clinical research design, regulatory evaluation, health technology assessment and real-world implementation of treatments. Next to that, there are moral and ethical imperatives to involve patients in the medicines lifecycle, as their quality of life ultimately depends on the suitability and availability of treatments.
Despite this progress, collaboration between patient organisations and pharmaceutical companies is not yet structurally embedded throughout the medicines lifecycle. Differences in expectations, lack of mutual understanding and trust, and unclarity about roles and can create barriers to equal partnership and collaboration.
The Patient-Focused Medicines Collaboration was initiated to address these challenges by creating an initiativefor shared learning, trust-building, and joint action (within the boundaries of current guidelines and legislations).
Objectives
The first phase of PSM focuses on laying the foundation for sustainable, long-term cooperation. Key objectives include:
- Creating a safe and structured environment for dialogue between patient organisations and pharmaceutical companies, with a transparent decision-making structure
- Mapping current practices and identifying opportunities for improvement
- Developing practical guidance to support equal collaboration within legal and ethical boundaries
- Contributing to improved processes where patient participation plays a critical role, including developments in the EU HTA framework
Activities
During the initial phase (mid-2025 to mid-2026), the initiative will:
- Organise structured dialogue sessions between participating organisations
- Analyse existing collaboration practices and regulatory considerations
- Co-develop practical tools and guidance documents
- Formulate recommendations to strengthen structural patient participation across the medicines lifecycle
The results of this phase will include tangible assets that can be used by a wider community of patient organisations and pharmaceutical companies, a strong network of patient organisations and pharmaceutical companies and increased mutual understanding and trust. These outcomes inform next steps for continuation and expansion.
Lygature’s Role
Lygature acts as an independent and neutral facilitator, supporting alignment between stakeholders and enabling constructive collaboration within applicable regulatory frameworks. Drawing on its experience in managing public–private partnerships and multi-stakeholder initiatives, Lygature:
- Designs and moderates collaborative processes
- Safeguards balanced and transparent participation
- Supports alignment with regulatory and policy developments
- Ensures continuity and structured programme management
By providing neutral facilitation, Lygature enables stakeholders to focus on shared goals while building trust and long-term collaboration.
“Making good medicines available to patients is only possible when medicine developers and patient organisations are able to engage in dialogue with one another. This can be complex and at times sensitive, and it is only meaningful when it takes place in a safe, respectful and equal manner, in full compliance with applicable laws and regulations. The ‘Patient-Focused Medicines Collaboration’ initiative was established to facilitate this dialogue. Lygature supports the initiative as a neutral party and as a centre of expertise in public–private partnerships.”
- Vera Nies, Senior Partnership Leader, Lygature
Participating Organisations
The platform brings together a broad alliance of patient organisations, pharmaceutical companies and sector representatives, including:
- 1op5 Foundation for Rare Cancer Patients
- AstraZeneca
- Boehringer Ingelheim
- Bristol Myers Squibb
- Diabetesvereniging Nederland
- Johnson & Johnson
- Pfizer
- Nationale Vereniging ReumaZorg Nederland
- Niervereniging Nederland
- Pulmonary Hypertension Foundation
- Vereniging Innovatieve Geneesmiddelen
Additional organisations are welcome to engage with the initiative.
