Trust, inclusion, and action

The DNA of PiCC United is built on a foundation of authenticity, empowerment and collaboration. Its identity is characterised by a deep commitment to creating genuine partnerships between patients and healthcare professionals. This is reflected in everything PiCC United does – from education to advocacy and counselling.

Core elements of PiCC United’s DNA:

Inclusion and Diversity:

PiCC United takes pride in making patient involvement accessible to everyone, regardless of experience or background. The organisation strives to break down barriers and welcome “the average citizen” into decision-making processes where their voice can make a difference.

Patient Expertise:

At PiCC United, patients are recognised as experts in their own experiences and needs. This perspective underpins all collaborations and projects, where patient knowledge and insight are respected and valued.

Collaboration and Partnerships:

Together we are stronger. PiCC United bridges the gap between patients, patient organisations, healthcare, and industry through partnerships based on mutual respect and shared goals.

Knowledge and Education:

PiCC United is committed to empowering patients and professionals through knowledge sharing and learning, with a focus on practical tools and evidence-based methods.

Sustainable Change:

The organisation’s work centres on creating long-term solutions that promote a sustainable and equitable approach to healthcare for the future.

The essence of PiCC United’s DNA is about putting patients at the centre and elevating their voice as an equal part of the healthcare system. Through collaboration, knowledge, and a strong belief in change, the organisation works to create a healthcare sector that is built with patients – not just for them.

PiCC United applies a transparent three-tier network model to distinguish between direct engagement, extended collaboration, and potential dissemination reach.

At PiCC United, we work with patient involvement and stakeholder engagement across healthcare, research and policy.
To ensure transparency, credibility and responsible communication, we apply a three-tier network model that clearly distinguishes between direct engagement, extended collaboration, and potential dissemination reach.

1. Direct Network

2. Extended Network (via umbrella organisations)

3. Potential Reach

This approach is deliberately cautious and aligned with expectations from European and international funding and policy frameworks. It allows partners, funders and stakeholders to understand how we engage, at what level, and for which purposes — without overstating access, influence or reach.

1. Direct Network

Active collaboration and co-creation

Our direct network consists of organisations and individuals with whom PiCC United has active and ongoing collaboration. These relationships involve regular interaction and clearly defined roles across projects, advisory activities, co-design processes and implementation work.

This level of engagement reflects direct participation rather than representation.

Includes:

• • National patient organisations

  • Research institutions and project partners

  • NGOs and professional networks

  • Patient advocates, experts and facilitators

How this is used:
Direct involvement in project design, governance structures, advisory boards, implementation activities and sustainability planning.

2. Extended Network

Structured collaboration via umbrella organisations

Our extended network reflects indirect connections established through collaboration with European and international umbrella organisations and alliances.

PiCC United does not claim direct access to individual members of these organisations. Instead, these relationships enable structured collaboration, coordination and dissemination across national and thematic networks.

Includes:

• • European and international patient and advocacy alliances

  • Education platforms and multi-stakeholder networks

How this is used:
Indirect engagement for dissemination, consultation, alignment and policy dialogue — without claiming direct participation or guaranteed involvement.

3. Potential Reach

Dissemination and knowledge sharing

In addition to direct and extended networks, PiCC United contributes to a wide range of projects, conferences, publications and policy-related activities at European and international level.

This represents potential reach, not confirmed engagement.

Includes:

• • International and European projects

  • Conferences and professional events

  • Webinars, publications and policy forums

How this is used:
Knowledge sharing, visibility of best practices, policy input and awareness-raising across healthcare, research and patient communities.

Why this model matters

By clearly separating direct engagement, extended collaboration and potential reach, PiCC United ensures:

• • Transparent and responsible communication

  • Credible and realistic impact descriptions

  • Alignment with international evaluation standards

  • Respect for the autonomy and governance of partner organisations

This model reflects our commitment to genuine patient involvement, equitable partnerships and sustainable impact — without inflating numbers or overstating influence.

Our Vision in Action

PiCC United’s pillars are more than ideals — they guide every decision we make. Through collaboration, education, and an unwavering commitment to patients, we strive to create a healthcare sector where patients and professionals are equal partners, working together for meaningful change.

Read more about What Defines Us on this site. 

PiCC United is a non-profit, patient-driven community that brings together patients, relatives, patient organisations, academics, non-profit organisations and healthcare stakeholders in open and inclusive collaboration. Our goal is to make it easier for more people to be involved in health and research – both nationally and internationally.

We develop and provide education and resources for patients and other healthcare stakeholders to promote meaningful, high quality patient involvement in the development of healthcare, medicines and medical devices.

PiCC United achieves this through:

• • Developing and disseminating accessible, well-structured and user-friendly educational materials and learning programmes that are independent and professionally credible.
  • Providing cross-training and capacity-building for both patients and professionals to strengthen mutual understanding and the practical implementation of patient engagement.
  • Participating in and initiating projects that promote patient engagement and health equity.
  • Creating and maintaining national and international networks that strengthen cross-collaboration.
  • Fundraising and mobilising resources for patient-driven activities.
  • Facilitating interaction between patients, healthcare professionals, researchers, and policy makers.
  • Actively working to include voices that are often overlooked – with a special focus on diversity, equality, and representation.

All of this is done in line with PiCC United’s guiding principles, which include collaborative leadership, an inclusive approach, and community engagement. Our governance structure is flexible, transparent, and designed to adapt to the needs of a changing healthcare system.

Financial Structure and Transparency

PiCC United is a non-for-profit organisation that promotes patient engagement in a systematic and sustainable way. To ensure the financial independence and sustainability of the organisation, we follow a diversified funding model that combines services, partnerships, public and private grants, as well as membership and donation-based funding. While we are in the process of becoming a registered NGO, we have initially adopted a not-for-profit model to avoid the financial burden associated with formal NGO registration.

Funding sources

PiCC United’s funding is composed of several sources to ensure a robust and transparent economy.

Services for external partners

PiCC United offers a range of services to companies, organisations, and institutions seeking to improve patient engagement. These services include:

• • Patient consultation: Counselling on patient engagement in research, clinical trials, and materials development.
  • Patient Group Facilitation: Recruitment and facilitation of advisory boards and workshops.
  • Training & Mentoring: Development of e-learning modules, webinars, and training materials.
  • Compliance & Audit-readiness: Quality assurance for patient engagement and adherence to regulatory requirements.
  • Co-Creation & Communication: Development of patient-centred information and communication materials.

Partners include:

• • EIT Health – Innovation projects focused on patient engagement.
  • Pharma & CROs – Development of patient-centred studies and materials

Sponsorships & Partnerships

PiCC United receives financial support from strategic partners committed to improving patient engagement, including:

• • Pharma & Biotech companies – As part of their patient engagement strategies
  • Academic institutions – Supporting patient-driven research projects
  • NGOs & Foundations – Funding to amplify patient voices
  • Public institutions – Support for structured patient engagement programmes

Sponsorship agreements can be either project-based or long-term partnerships.

Public & Private Grants

PiCC United seeks funding from:

• • EU programmes (Horizon Europe, the Innovative Health Initiative)
  • National patient support programmers
  • Private foundations with a focus on health and equality

Membership & Donations

• • Free membership for patients, carers, and patient organisations
  • Paid membership for healthcare professionals, researchers, and pharma employees
  • Donations from private donors
  • Merchandise & Shop – Sale of e-books, courses, and educational materials

Distribution of Funds

All funds are reinvested in PiCC United’s activities with a focus on the following areas:

Operation & Maintenance

• • Platform, website and database maintenance
  • IT security and data protection
  • Administration and communication with members

Patient-Driven Projects

• • Funding for patient-prioritised projects
  • Development of resources and tools

Training & Capacity Building

• • Webinars, e-learning programmes and mentoring 
  • Development of introductory materials for new patients

Governance & Transparency

• • Biannual internal financial reports
  • Annual external financial review
  • Publicly available reports on budget and performance

Transparency & Compliance

PiCC United adheres to strict ethical and regulatory guidelines:

• • 100% financial transparency – All funds are fully documented and reported
  • GDPR compliance – Robust data protection and confidentiality for members
  • Independence – No sponsor may directly influence PiCC United’s activities

We recognise that transitioning to an NGO requires significant financial and administrative capacity. PiCC United has opted for a not-for-profit model during this transition phase, ensuring financial stability without undue administrative burden.

Conclusion

PiCC United has built a financial structure that ensures sustainable growth and independence through:

✅ Services to partners (EIT Health, WHO, pharma, academic institutions)

✅ Sponsorships & partnerships (project-based and general funding)

✅ Grants & funds (public & private grants)

✅ Member contributions & donation-based funding

All funds are reinvested in the patient community to ensure sustainable growth and stronger patient engagement.

PiCC United is established in the public interest and operates on a not-for-profit basis.

PiCC United was born from the friendship, collaboration, and enthusiasm of three organisations: Patients United, MediPaCe, and OptiPharm Medical LLC. Together, they identified the challenges of consistently incorporating patient perspectives across all healthcare sectors – including patient advocacy, voluntary organisations, academia, pharmaceutical companies, and regulatory bodies. To address these barriers, PiCC United was created as a solution and, in 2024, merged with Patients Unite, further strengthening our mission to ensure patients’ voices have real impact.

At PiCC United, we believe that lived experiences can shape the future of healthcare. Our supportive and welcoming community empowers patients to contribute to the development of therapies and health services that are truly relevant. We aim to amplify patient voices by promoting diversity and inclusion, ensuring that all perspectives are heard. Whether you’re new to this or an experienced advocate, we are here to support your journey.

Our key principles revolve around collaboration and inclusivity, always prioritising patient health and wellbeing over individual interests. PiCC United offers a wide range of activities, educational resources, and engagement opportunities to empower patients to participate in research and advocacy. Looking ahead, we plan to establish a Strategic Advisory Committee (SAC) and an Executive Committee (EC) to guide and implement our strategic goals – ensuring we continue to deliver meaningful patient-driven projects.