PiCC United's
Patient Contract Details
We Help Make Patient Involvement Easier with Participation & Consent Agreement
We Help Make Patient Involvement Easier
Many patients, caregivers and small patient communities want to contribute to healthcare, research and innovation — but the process can often feel overwhelming.
Contracts, compliance requirements, payments, vendors, legal documents and project administration can create barriers that prevent people from getting involved. PiCC United was created to help remove those barriers.
We Take Care of the Administration
When you join PiCC United through our Participation & Consent Agreement, you become part of a network that can be matched with relevant opportunities. Instead of managing multiple agreements, legal documents and administrative processes for every project, PiCC United helps coordinate and support the process.
We work with healthcare organisations, researchers, pharmaceutical companies, industry partners and patient communities to facilitate meaningful and ethical patient involvement.
What PiCC United Helps With
Contracts and Documentation
We help manage agreements, project documentation and participation processes so involvement becomes simpler and more accessible.
Compliance and Transparency
We support ethical and transparent collaboration aligned with patient engagement standards, privacy requirements and Fair Market Value principles.
Payment Administration
Where compensation is provided, PiCC United helps coordinate fair and transparent payment processes.
Vendor and Partner Management
Many projects involve external vendors, agencies, research organisations or healthcare partners.
PiCC United helps bridge these relationships and simplify the process for participants
Project Coordination
We help connect participants with suitable opportunities and provide support throughout the collaboration process.
Supporting Small Communities and Rare Diagnoses
Many rare disease communities and smaller patient organisations lack the resources, infrastructure or administrative capacity needed to participate in larger projects.
PiCC United provides backbone support that helps ensure these voices can still be heard. We believe meaningful patient involvement should not depend on the size of an organisation or the resources available to a community.
How It Works
Step 1
Complete the Participation & Consent Agreement.
Step 2
Tell us about your experience, interests and areas of expertise in this questioner.
Step 3
Receive opportunities that may match your profile.
Step 4
For each project, you receive a separate Project Overview describing:
- Purpose
- Activities
- Time commitment
- Compensation (if applicable)
- Data processing
- Roles and responsibilities
Why We Use a Participation & Consent Agreement
The Participation & Consent Agreement serves as a simple foundation that allows PiCC United to work more efficiently on your behalf.
It helps reduce repetitive paperwork, simplify project onboarding and create a more accessible pathway into patient involvement activities.
You remain free to decide whether or not to participate in any individual project.
Ready to Get Involved?
Whether you are a patient, caregiver, advocate, healthcare professional or representative of a small patient community, your experience matters.
PiCC United helps create opportunities while reducing the administrative burden that often makes involvement difficult.
Frequently Asked Questions
Joining PiCC United does not commit you to participate in any project.
You remain free to decide whether or not to take part in individual opportunities.
For each opportunity, you will receive information about:
- Purpose and objectives
- Expected time commitment
- Compensation (if applicable)
- Privacy and data processing
- Roles and responsibilities
before deciding whether to participate.
At PiCC United, we believe that lived experience, expertise, and time have value.
Where funding is available, participants may receive compensation in accordance with Fair Market Value (FMV) principles and applicable project requirements.
Compensation varies depending on the nature of the activity and may include:
- Advisory boards
- Workshops and co-creation sessions
- Interviews and consultation activities
- Speaking engagements
- Research participation
- Educational and training activities
Travel and approved expenses may also be reimbursed where applicable.
Participation opportunities may be:
- Voluntary
- Reimbursed for expenses only
- Compensated according to FMV principles
The details of any compensation will always be clearly described within the relevant Project Overview before participation begins.
At PiCC United, we believe that lived experience, expertise, and time have value.
Where funding is available, participants may receive compensation in accordance with Fair Market Value (FMV) principles and applicable project requirements.
Compensation is always explained before participation begins and may vary depending on the nature of the activity, available funding, and sponsor requirements.
Not necessarily.
Some opportunities are voluntary, while others include compensation, reimbursement of expenses, or honoraria.
Before agreeing to participate, you will always receive information about:
- The purpose of the activity
- Expected time commitment
- Any compensation available
- Reimbursement arrangements
- Project-specific requirements
Participation is always voluntary.
For activities involving compensation, PiCC United may enter into a separate Project Overview, Participation Agreement, Statement of Work, or Honorarium Agreement.
This document will outline:
- Scope of the activity
- Roles and responsibilities
- Expected deliverables (if applicable)
- Compensation arrangements
- Payment timelines
- Data protection and confidentiality requirements
Where approved in advance, project-related expenses may be reimbursed.
Examples include:
- Travel expenses
- Accommodation
- Meals
- Other agreed participation costs
Reimbursement requirements will be clearly communicated for each activity.
Where compensation applies:
- Payments are normally made by bank transfer.
- Payment timelines are usually within 30 days of receiving the required documentation.
- Depending on the project, compensation may be provided through an invoice, honorarium process, payroll service, vendor payment system, or another agreed mechanism.
Project-specific payment details will always be communicated in advance.
In some cases, the final amount received may differ due to:
- International bank transfer fees
- Currency exchange rates
- Intermediary bank charges
- Local taxes or VAT obligations
- Country-specific reporting requirements
PiCC United actively advocates for fair and transparent compensation that reflects the true value of patient & cares involvement.
No.
The Participation & Consent Agreement simply allows PiCC United to include you in our network and contact you about relevant opportunities.
You remain free to accept or decline any individual activity or project.
One of PiCC United’s key goals is to reduce the administrative burden on participants.
Where possible, PiCC United helps coordinate:
- Contracts and agreements
- Compliance requirements
- Payment administration
- Vendor coordination
- Project onboarding
- Participant support
This makes it easier for individuals and small patient communities to engage in healthcare and research activities.
PiCC United Stichting is established in the Netherlands.
General agreements are governed by Dutch law unless otherwise specified within a project-specific agreement or Statement of Work.