Who is PiCC United?

Turning Patient Voices into Real-World Impact

PiCC United is a patient-led NGO organisation advancing meaningful patient involvement in healthcare and research across Europe and beyond.

Our story

PiCC United (Patient Involvement and Collaboration Community United) was created from a shared recognition that patient involvement in healthcare and research is often talked about—but not always meaningfully implemented.

The organisation was founded through collaboration between patient advocates and professionals working across healthcare, research, and patient engagement—bringing together different perspectives to create a more practical and inclusive approach.

Since then, PiCC United has grown into a patient-led, not-for-profit initiative working to strengthen how patient voices are included in real-world decision-making.

Our focus remains the same: to make patient involvement more accessible, more inclusive, and more impactful—so that lived experience becomes an integrated part of healthcare systems, not an afterthought.

PiCC United builds on collaborations between initiatives such as Patients United, MediPaCe, and Patients Unite.

Mission

PiCC United brings together patients, carers, healthcare professionals, researchers, and organisations to strengthen patient involvement in healthcare and research. We focus on making involvement more accessible and structured by reducing barriers such as lack of access, experience, or opportunity—enabling more people to participate in meaningful ways.

Learn more about our mission: here

How we create impact

Our work turns patient input into practice through collaboration, practical approaches, and accessible engagement models—ensuring that lived experience actively informs decisions. At the core of PiCC United is the recognition that lived experience is expertise. We support this through a structured approach to collaboration, including direct engagement, partnerships, and broader system-level influence.

OUR DNA

PiCC United is built on a foundation of patient-led collaboration, inclusion, and practical impact.

Our work is guided by a commitment to making patient involvement more accessible, structured, and meaningful across healthcare and research.

Core elements of PiCC United’s DNA

Inclusion and Diversity
We work to make patient involvement accessible to more people by lowering barriers related to experience, access, and opportunity—ensuring that a wider range of voices can participate.

Patient Expertise
We recognise lived experience as a form of expertise. Patients and carers contribute essential knowledge that helps shape more relevant and effective healthcare solutions.

Collaboration and Partnerships
We bring together patients, professionals, organisations, and industry to enable structured and respectful collaboration focused on shared outcomes.

Knowledge and Education
We provide practical tools, resources, and learning opportunities to support informed participation and strengthen engagement across stakeholders.

Sustainable Change
We focus on creating approaches that can be embedded into systems—supporting long-term, scalable improvements in patient involvement.

How we work

PiCC United applies a structured approach to collaboration through a three-tier model:

- direct engagement and co-creation
- extended collaboration with partners
- broader dissemination and system-level influence

At its core, PiCC United works to ensure that healthcare is shaped with patients and carers—not only for them.

OUR APPROACH "NETWORK & REACH"

PiCC United operates through a structured network model designed to support meaningful patient involvement at different levels of engagement.

This approach allows us to balance accessibility with quality, ensuring that both individuals and organisations can participate in ways that match their experience, capacity, and needs.

Three Levels of Engagement

1. Direct Engagement and Co-Creation

We facilitate direct collaboration between patients, carers, and stakeholders in healthcare and research.
This includes participation in advisory boards, workshops, research activities, and co-design processes—where lived experience directly informs decisions and outcomes.

2. Extended Collaboration and Partnerships

We work with organisations, patient groups, and partners to strengthen how patient involvement is implemented in practice.
This includes providing guidance, facilitating collaboration, and supporting structured approaches to engagement.

3. Dissemination and System-Level Influence

We contribute to broader awareness and long-term change by sharing knowledge, insights, and best practices across networks, projects, and platforms.
This helps ensure that learnings are scaled and applied beyond individual initiatives.

Why this approach matters

Patient involvement is not one-size-fits-all.

By creating multiple entry points and levels of engagement, PiCC United enables more people to participate—while maintaining quality, structure, and impact.

This model allows PiCC United to connect people, knowledge, and systems—ensuring that patient involvement is both accessible and effective across healthcare and research.

How we work in practice

PiCC United operates as a patient-led, non-profit community that connects patients, carers, professionals, and organisations in open and structured collaboration.

We focus on making patient involvement more accessible by providing education, practical tools, and opportunities to engage in healthcare and research—both nationally and internationally.

Our activities include

- Developing accessible educational resources and learning programmes
- Supporting capacity-building for patients and professionals
- Facilitating collaboration across stakeholders
- Participating in and initiating projects focused on patient engagement and health equity
- Building national and international networks
- Promoting inclusion by engaging underrepresented communities

Our foundation

Our work is guided by transparent governance, collaborative leadership, and a commitment to inclusion—ensuring that patient involvement is ethical, practical, and sustainable.

FINANCIAL STRUCTURE & TRANSPARENCY

PiCC United is a patient-led, not-for-profit organisation working to ensure sustainable, independent, and transparent patient engagement across healthcare and research.

We operate with a diversified funding model designed to support long-term impact while maintaining full independence from external influence.

Our funding model

PiCC United combines multiple funding sources to ensure financial stability and transparency:

- Services for external partners
  Supporting organisations with patient engagement, including consultation, co-creation, training, and facilitation
- Sponsorships and strategic partnerships
  Collaborations with organisations committed to improving patient involvement, including participation in our Sponsor Advisory Board.
  Our Sponsor Advisory Board provides a structured space for strategic partners to contribute insights—without influencing organisational independence.
- Public and private grants
  Including EU programmes, national initiatives, and foundations focused on health and equity
- Donations and project-based support
  Contributions that support patient-driven initiatives and community activities
- Public and private grants
  Including EU programmes, national initiatives, and foundations focused on health and equity

What we do in practice

Our services and activities include:

Patient consultation and advisory support
Facilitation of patient groups, workshops, and co-creation processes
Training, webinars, and educational programmes
Development of patient-centred materials and communication
Support for compliance and audit-ready patient engagement

How funds are used

All funding is reinvested into PiCC United’s work, including:

- Operations and infrastructure
  Platform, IT systems, data protection, and administration
- Patient-driven projects
  Development of tools, resources, and initiatives led by patient priorities
- Training and capacity building
  Webinars, learning programmes, and support for new participants

Governance and transparency

Transparency and independence are central to how we operate.

We ensure this through:

Regular financial reporting and oversight
Public transparency on activities and use of funds
Full GDPR compliance and data protection
Clear independence from sponsor influence

Our position

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

We are currently transitioning towards formal NGO status, while maintaining a structure that ensures financial sustainability and operational flexibility.