Terms and Conditions for Researchers Engaging with Pregnancy Sickness Support for Patient and Public Involvement and Engagement (PPIE)

1. Introduction

These Terms and Conditions set out the expectations, responsibilities, and mutual commitments between Pregnancy Sickness Support (“the Charity”) and any researcher or research team (“the Researcher”) seeking to engage the Charity in Patient and Public Involvement and Engagement (PPIE). By initiating collaboration, the Researcher agrees to abide by these Terms.

2. Purpose of Engagement

Pregnancy Sickness Support exists to represent and support people with lived experience of hyperemesis gravidarum (HG) and part of that is to ensure their voices are meaningfully embedded in research. PPIE facilitated by the Charity aims to:

• Improve the quality, relevance, and real-world impact of research
• Empower people with lived experience to shape research agendas and outcomes
• Promote ethical, inclusive, and equitable research practice

3.  Scope of PPIE Support

Pregnancy Sickness Support may support researchers through services across the following areas:

a. Study Design and Documentation

• Input on research questions, priorities, and materials
• Assistance with study design, ethics applications, and lay summaries
• Production of participant-facing information, materials and social media post

b.  Recruitment and Contributor Engagement

• Recruitment and coordination of individuals with lived experience
• Facilitating focus groups, surveys, or advisory panel

c.  Knowledge Translation and Dissemination

• Promotion of ethically approved studies, where appropriate and aligned with our values
• Involvement in co-production, knowledge translation, or dissemination

4. Expectations of Researchers

Researchers engaging with Pregnancy Sickness Support agree to:

a. Treat all contributors, including patients and public participants, with respect, professionalism, and compassion
b. Provide clear information about the project, timelines, funding status, and purpose of involvement
c. Engage with the Charity as early as possible in the research process
d. Compensate all public contributors appropriately in line with national guidance (e.g. NIHR standards)
e. Provide timely feedback to PPI contributors on the impact of their input
f. Appropriately acknowledge the Charity and contributors in outputs such as papers, posters, and presentations

.

5. Responsibilities of Pregnancy Sickness Support

The Charity will:

a. Provide appropriate and inclusive involvement opportunities
b. Ensure safeguarding and confidentiality for PPI contributors
c. Maintain clear communication and manage expectations between researchers and contributors
d. Flag any concerns around ethics, inclusivity, or quality of engagement
e. Reserve the right to decline or withdraw from a project if it conflicts with our values or causes harm to our community
f. Respond to new PPIE enquiries within 5 working days wherever possible

6. Ethical Standards

Researchers are solely responsible for obtaining ethical approvals from relevant bodies. Pregnancy Sickness Support may request evidence of ethics approval before proceeding with PPIE activities.

 7. Confidentiality and Data Protection

All parties must comply with applicable data protection laws (e.g. UK GDPR). The Researcher must treat personal information shared through PPIE confidentially and use it only for the agreed purpose.

8. Equity, Diversity, and Inclusion (EDI)

Pregnancy Sickness Support is committed to inclusive practice. We expect researchers to:

• Consider accessibility, communication needs, and intersectionality
• Make reasonable adjustments for participation
• Avoid tokenism and ensure that lived experience voices hold meaningful influence

 9. Costs and Compensation

Pregnancy Sickness Support charges for PPIE support, covering both coordination services provided by the charity and involvement payments for people with lived experience of hyperemesis gravidarum.

Reimbursable Expenses

We ensure participants are not out of pocket for their involvement. Reimbursable expenses include:

• Travel Expenses:Reimbursement for mileage (at HMRC rates) or public transport costs.
• Childcare Costs:Covering additional childcare needed to enable participation.
• Online Participation Costs:A flat fee of £10 per session for internet and utility usage.
• Printing and Materials:Reimbursement for any costs incurred for printing study documents or materials.

Meals and Refreshments: £10 allowance for meals during long in-person sessions

c. What Happens if Budget Is Not Available?

We understand that not all funding opportunities allow for extensive PPI budgeting. In such cases, researchers may still collaborate with us, but we require:

• A clear explanation of why funding is unavailable.
• A transparent plan for how participants’ time and effort will be acknowledged and supported in non-financial ways (e.g., certificates, acknowledgments in publications).
• Payment of minimum PSS service fee of £25 which includes the participant recruitment.

Please note: Without a budget for participant payments, PSS reserves the right to decline certain PPI requests.

All payments will be made via direct invoicing unless otherwise agreed.

Researchers must include all relevant PPIE and facilitation costs in their grant applications or institutional budgets. We are happy to provide written quotes or support with budgeting where needed.

10. Gatekeeping and Transparency of Other PPIE Collaborators

Pregnancy Sickness Support serves as a gatekeeper to individuals with lived experience of hyperemesis gravidarum, and we take this responsibility seriously to ensure their involvement is ethical, safe, and meaningful.

Researchers agree to:

• Inform the Charity of any other organisations, groups, or individuals involved in PPIE activities related to the project
• Avoid approaching our community directly (e.g. via social media, forums, or support networks) without our prior knowledge and consent
• Coordinate through the Charity when engaging contributors we have recruited or supported, to ensure appropriate safeguarding, communication, and payment

Failure to disclose parallel PPIE activity may result in the Charity withdrawing support from the project. This is to prevent duplication, miscommunication, and undue burden on contributors, and to uphold a safe and respectful engagement process for people with lived experience.

11. Use of Charity Name and Branding

Researchers may not use the Charity’s name, logo, or branding in funding applications, publications, or promotional materials without prior written permission. Requests will be considered where collaboration has been formalised, and all terms and conditions have been agreed to.

12. Dispute Resolution and Termination

All parties agree to resolve disagreements constructively. Pregnancy Sickness Support may terminate PPIE involvement at any time if these Terms are not followed or if engagement is deemed harmful to our contributors or mission.

13. Review and Amendments

These Terms and Conditions may be revised periodically. Continued collaboration implies agreement to the most current version.

How to contact us:

PPIE Lead – Kirsty Kamal
Email: kirsty@pregnancysicknesssupport.org.uk

Version 1 – June 2025