Help understanding your
Patient Contract Details
Here you’ll find a helpful checklist outlining what your contract should include and what to be aware of before signing.
Patient Involvement Contract
At PiCC United, we believe that patient participation should be built on clear expectations, transparency and mutual respect. To support this, we’ve developed a checklist of key elements your patient involvement contract should include. This helps to ensure that both patients and the organisations they collaborate with, whether hospitals, research institutions, or pharmaceutical companies, understand their roles, responsibilities, and rights.
Here are key points that a contract should include:
Identification of the Parties
Full names and contact details of all parties, including the patient, their representative (if applicable), and the engaging organisation. It is also essential to clearly identify the roles of key contacts, such as project leads or coordinators. Consider providing emergency contact details to ensure quick communication, if needed during the project.
Purpose of the Involvement
A clear explanation of the involvement purpose and what contributions are expected from the patient (e.g., meetings, workshops, interviews, material review).
Description of how patient input will be used, how often feedback will be provided to the patient (and through which channels), and how results will be shared. There should be transparency on how patient feedback will influence decisions.
Scope of Work and Tasks
A detailed description of patient tasks and responsibilities should be provided.
A timeline indicating the start/end dates and time commitment should be stated. The contract should also outline procedures for handling task or schedule changes, if unforeseen circumstances arise. This also includes how consent will be obtained.
Fees and Reimbursement
Details of any payment or honorarium for participation, including amounts and payment timelines.
Reimbursement details for costs such as transportation or meals, that the patient may incur in connection with the involvement should be stated. It is important to specify how patients can submit expenses, including the documentation required for approval, and expected processing times.
Confidentiality and Data Management
Confidentiality agreements where the patient agrees to keep information confidential.
Information on how personal data will be stored, accessed, and protected should be shared. In addition, timeframes for data retention, deletion, or archiving, and a named contact for data protection queries.
Publication and Reports
Any reports, documents, or correspondence related to the contract will require written consent from all parties before being shared or published.
Insurance and Liability
Information on whether and how the patient is insured during their participation.
Limitations of liability for both parties. This may include responsibility for any damage or loss that the patient may incur during the activities.
The patient’s responsibility to ensure personal insurance coverage, (e.g. health insurance), if applicable. The contract should clearly state the situations that are covered by the organisation’s insurance and include instructions for making insurance claims if needed.
Right to Terminate Participation
Guidelines for how the patient, carer or organisation can terminate the contract, and under what conditions.
Conditions for early withdrawal and any compensation due for completed work. The standard notice period is, any party may withdraw from and dissolve this contract with 15 days’ written notice.
Ethical Considerations and Consent
Clear consent procedures detailing what the patient or carer agrees to by participating and how they can withdraw their consent.
Ethical safeguards, for discussing sensitive or emotionally challenging topics and signposting to support mechanisms (e.g., access to counselling services if needed).
Anti-Corruption and Bribery
PiCC United maintains a zero-tolerance policy for bribery and corruption. All parties must avoid actions that could be perceived as corrupt or an attempt to improperly influence decisions.
Complaints and Conflict Resolution
Procedures for submitting and resolving complaints or disputes, including options for mediation.
Both parties agree to attempt resolution through dialogue or mediation for at least 60 days before pursuing arbitration. A designated contact person within the organisation should be identified for managing complaints or concerns from the patient, and a timeframe should be included for resolving complaints.
Governing Law and Jurisdiction
A clause that establishes which law governs the contract and which jurisdiction will be responsible in case of legal disputes. If disputes cannot be resolved through mediation, arbitration will be used as the final resolution method, in accordance with Finnish law. However, parties may seek interim legal relief from a competent court when necessary.
PiCC United's Role in Raising Awareness of FMV Challenges
At PiCC United, we understand that Fair Market Value (FMV) considerations are too often overlooked when agreements are made between healthcare professionals, researchers, CROs, pharmaceutical companies, and other stakeholders. The final amount patients receive, and the conditions under which they receive it, are not always transparent, even though it directly affects their ability to participate.
We are committed to shed light on these challenges, so that compensation does not become a barrier to patient involvement. But we also recognise that real change takes time.
To ensure a fair solution, we must align on shared values and principles for how FMV payments should be handled. Only by working together can we ensure that patient representatives receive the respect and fair compensation that they deserve.
Honorarium for Involvement at PiCC United
At PiCC United, we value the contributions that patients, carers, and collaborators bring to our projects. To ensure transparency and fairness, we have established a clear and straightforward process for compensating involvement.
Entering into an Agreement
When you engage with PiCC United, we will draw up a written agreement outlining the terms of your involvement. This agreement will include details about the tasks you will perform, and the compensation you will receive.
Scope of Work
The agreement will clearly define your responsibilities and expected deliverables. This ensures that both parties have a clear understanding of the work to be completed and goals of the collaboration.
Fee Structure
Engagement fees typically consist of two parts:
- Fixed Fee: A fixed amount for your involvement, based on hourly, daily, or project-based rates.
- Variable Expenses: Reimbursement for necessary, pre-approved costs directly related to your participation (e.g. transport, meals) will be covered by PiCC United. These expenses must be documented and agreed upon in advance.
Invoicing and Payment
- Invoicing: You may submit an invoice at the end of the project or monthly, depending on your agreement. Alternatively, we will issue an honorarium after the project.
- Payment Timeline: We aim to process all payments within 30 days of receiving a valid invoice or honorarium form.
- Payment Method: Payments are made via bank transfer, or another agreed method.
- Termination: Either party may terminate the agreement with a written notice. The duration of the agreement will be specified and can either be for a fixed term or until the work is completed.
Confidentiality
Confidentiality is a key value at PiCC United. We are committed to protecting your privacy, and we expect the same in return for any sensitive information shared during the collaboration.
Amendments
All changes to the agreement must be made in writing and signed by both parties to be valid. This ensures clarity and accountability.
Governing Law and Jurisdiction
All agreements with PiCC United are governed by Finnish law, and any disputes will be resolved through an agreed legal process or arbitration.
If you have any further questions or need more information, you are always welcome to contact us at Hello@piccunited.org. We look forward to a fruitful cooperation!
Why Your Payment May Be Lower Than Expected
Sometimes the payment you receive may be less than anticipated due to factors often overlooked in Fair Market Value (FMV) assessments, including:
- Bank Transfer Fees – International transactions often come with high costs.
- Currency Exchange Rates – Fluctuations can reduce the final amount.
- Intermediary Bank Fees Fees charged by banks handling the transaction.
- Tax and Compliance Deductions – Depending on your country’s tax laws, your payment may be subject to VAT or income tax.
At PiCC United, we actively advocate to raise awareness of these hidden costs and for fair FMV payments that reflect the full value of patient involvement.
