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Engagement with Public Contributors

Updated on 31.03.2023 v2

1.      Contents

1.     Contents                                                                                                                                               

2.     Introduction

3.     Purpose

4.     Scope

5.     Policy

5.1   Principles

5.2   General procedures

5.3   Changes to payments offered

5.4   Tax and National Insurance

5.5   Public contributors that received state benefits

Appendix 1 – Public Contributors Data Privacy Notice

2.    Introduction

Patients and the public provide valuable insights into the design and delivery of clinical trials, helping to ensure that the results and their application to medical practice meets their needs.

3.    Purpose

This policy sets out how Protas supports members of the public to be involved in the work of Protas through reimbursing expenses and, in certain circumstances, offering involvement payments. This has been developed in line with the National Institute for Health Research’s (NIHR’s) Payment for Public Involvement in Health and Care Research: A guide for organisations on determining the most appropriate payment approach.

4.    Scope

This policy applies to public contributors. Public contributors are defined as members of the public who participate in the clinical trial research, design and delivery activities of Protas (patient and public involvement). This includes patients, potential patients, carers and people who use health and social care services, as well as people from organisations that represent people who use services. For clarity, a public contributor that falls under the scope of this policy is:

  • a member of the public; and
  • being asked by Protas to provide a public perspective on an aspect of a clinical trial or research relating thereto.

Public contributors are distinct from people who have a professional role in health and social care services or research. A person working full time in the public sector may, by exception, be entitled to payment of a fee provided that it is confirmed in writing that:

  • the person’s paid employment is unrelated to the activity being asked by Protas; and
  • the activity for Protas is undertaken in the person’s free time, such as through taking annual leave or outside normal working hours.

5.    Policy

5.1           Principles

Protas will reimburse all reasonable expenses associated with the public contributor’s involvement in the activities of the organisation, such as the costs of travelling to participate in an activity or subsistence during an activity.

Protas may also offer a payment to the public contributor to get involved in an activity, such as preparing for and attending a meeting. The payment offered will depend on the nature, scope and duration of the particular activity. These are honorarium payments. They are a form of reward and recognition offered for the contribution that the public contributor makes to the work of Protas. This does not mean that the public contributor has an on-going contract of employment with Protas nor is the public contributor obliged to accept the honorarium payment offered.

5.2            General procedures

The named lead contact at Protas will advise the public contributor on the nature, scope and duration of the activity they are being invited to participate in and must ensure that the public contributor is provided with a copy of this Policy and is aware of how it applies.

Protas will reimburse all reasonable and justifiable expenses incurred by the public contributor as a result of involvement in the activity. Expenses are to be agreed in advance with the named lead contact at Protas and will be reimbursed insofar as they do not exceed agreed rates. When expenses are required, the public contributor should endeavour to get the best value for money possible.

The named lead contact at Protas will also advise whether the activity of the public contributor will attract an honorarium payment. Honorarium payments, where applicable, will be offered and/or made on the following basis:

  • £12.50 – involvement in a task or activity such as reading and commenting on written materials which equates to less than half an hour;
  • £25 – involvement in a task or activity requiring little or no preparation and which equates to approximately one hour of activity or less;
  • £50 – involvement in a task or activity likely to require some preparation and which equates to approximately two hours of activity;
  • £75 – involvement in a task or activity where preparation is required and which equates to approximately half a day’s activity;
  • £150 – involvement in all-day meetings;
  • £300 – involvement in all-day meetings that require substantial preparation.

The named lead contact is responsible for issuing the correct expense claim form to the public contributor and can make printed version of the expense claim form and this Policy available to the public contributor on request. The public contributor should raise any queries with the named lead contact in the first instance.

Once the activity has concluded, the expense claim form should be completed and signed by the public contributor, detailing the expenses incurred and, where applicable, the honorarium payments owed. The public contributor must also provide evidence of expenditure (unless claiming for mileage) with receipts or invoices with the date and time of the transaction. VAT receipts should include the name and VAT registration number of the retailer or service provider; the goods and services provided; and the amount of VAT payable.

The public contributor will also need to declare the following in the expense claim form:

  • the expenses and any involvement/honorarium payments have been incurred as a result of working in partnership with Protas and they comply with Protas’ Public Contributor Payments policy;
  • for any mileage, the motor vehicle for which the allowance is claimed is insured, in roadworthy condition and complies with the requirements of the Road Traffic Acts and the public contributor holds a valid driving licence; and
  • the public contributor is personally responsible for any income tax or National Insurance contribution liability as a result of receiving an involvement/honorarium payment and will need to declare this to Her Majesty’s Revenue and Customs service or Department for Work and Pensions.

The public contributor should submit the completed expense claim form, along with supporting evidence to the named lead contact by email or, if by post, to the registered address of Protas:

Quality by Randomization Limited (T/A Protas)

2 New Bailey

6 Stanley Street

Salford,

Greater Manchester

United Kingdom

M3 5GS

Expense claim forms should be submitted within 30 days of the activity being completed. If submitting the expense claim form within 30 days is not practical, written approval for any extension should be requested from the named lead contact. The named lead contact may return the expense claim form to the public contributor if it is completed incorrectly or lacks sufficient supporting evidence.

If the activity the public contributor is participating in continues over an extended period, the public contributor may complete and submit the expense claim form based on the expenses incurred and the honorarium payments owed at the end of every two-week period should they so wish.

Once authorised, the expense claim form will be sent by the named lead contact to the Protas finance department ([email protected]) for processing. Protas will pay claims by BACS transfer into the bank account provided in the expense claim form. Protas aims to reimburse the public contributor within two weeks of approving the claim form to avoid the public contributor being unduly out of pocket.

All personal data will be securely stored and appropriately managed in line with GDPR data protection regulations. The Data Privacy Notice regarding this policy is set out in Appendix I.

5.3           Changes to payments offered  

If the requirements of the activity Protas has asked the public contributor to undertake are reduced due to changes in scope initiated by Protas, the original amount of honorarium payment offered will be honoured. If the level of activity required is increased by Protas, the payment offered will be increased accordingly.

Exceptionally, in circumstances such as illness or an emergency, if the public contributor has had to prepare for a task or activity but is then unable to participate in the task or activity, a nominal payment may still be offered by Protas depending on the amount of preparation undertaken in advance.

5.4           Tax and National Insurance   

The public contributor is personally responsible for any income tax or National Insurance contribution liability and will need to declare this to HMRC. Protas does not deduct tax or National Insurance contributions from payments.

5.5           Public contributors that received state benefits

If the public contributor is receiving state benefits, any payment of fees and expenses under this Policy may affect the benefit claim. Benefit conditions are complex and limits on payments that can be received with benefits vary widely. The public contributor should notify Jobcentre Plus of any paid or voluntary activity. The public contributor may also need permission to undertake any paid activity.

Appendix 1 – Public Contributors Data Privacy Notice

This privacy notice tells you what to expect when Protas, which is the trading name of Quality by Randomization Limited (a company limited by guarantee with registered number 13073677), collects personal information from you. Protas respects your privacy and is committed to protecting your personal data. Protas is collectively referred to as “we”, “us” or “our” in this privacy notice. 

This notice applies to public contributors. Public contributors are defined as members of the public who participate in the clinical trial research, design and delivery activities of Protas (patient and public involvement). This includes patients, potential patients, carers and people who use health and social care services, as well as people from organisations that represent people who use services. For clarity, a public contributor that falls under the scope of this notice is: 

  • A member of the public; and 
  • Being asked by Protas to provide a public perspective on an aspect of a clinical trial or research relating thereto. 

This privacy notice explains how we collect, share and use personal information about you, and how you can exercise your privacy rights. 

We currently collect, process and store the following personal data about you: 

  • Name   
  • Contact details   
  • Prior diagnoses or other limited health information (where relevant)   
  • Race and ethnicity (where relevant) 
  • Financial data (including your bank details), provided to us when completing the Public Contributors Expenses Claim Form  

The information we will process about you will vary depending on your specific engagement with Protas and your personal circumstances. When appropriate we will provide a “just in time” notice to cover any additional processing activities not mentioned in this document. 

The personal information we process is provided to us directly by you to allow us to get in touch regarding new and ongoing engagement opportunities, to understand your suitability for taking part in particular engagement opportunities, and to reimburse expenses and settle honorarium payments owed to you as a result of your involvement with Protas, in addition to any correspondence that may be required. 

Protas is the controller of the information we process, unless otherwise stated. You can contact us by post at the following address: 

Quality by Randomization Limited, 

2 New Bailey, 

6 Stanley Street, 

M3 5GS 
 

Our Data Protection Officer is Gaynor Dalton. You can contact them at [email protected] or via our postal address above. Please mark the envelope “Data Protection Officer”.  

Under the UK General Data Protection Regulation (UK GDPR), the lawful basis we rely on for processing this information is that it is necessary for our legitimate interests to be fulfilled, namely our constructive obligations to you under the Public Contributors Payments and Expenses Policy. Your information is securely stored. We will only retain your personal data for a limited period of time. This will depend on how long you are involved in the activities of Protas. 

Under data protection law, you have rights including:  

  • Your right to be informed: you have the right to be informed about the collection and use of your private data.
  • Your right of access: you have the right to ask us for copies of your personal information 
  • Your right to rectification: you have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete 
  • Your right to erasure: you have the right to ask us to erase your personal information in certain circumstances  
  • Your right to restriction of processing: you have the right to ask us to restrict the processing of your personal information in certain circumstances 
  • Your right to object to processing: via the email address or postal address above you have the right to object to the processing of your personal information in certain circumstances 
  • Your rights in relation to automated decision making and profiling: you have the right not to be subject to a decision based solely on automated processing, including profiling   

You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you. Please contact our Data Protection Officer via the email address or postal address provided above.  

In addition, if you have any concerns about our use of your personal information, you can make a complaint to us via this email address or postal address. You can also complain to the Information Commissioner’s Office (ICO) if you are unhappy with how we have used your data. The ICO’s contact information is as follows:  

Address: Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF  

Helpline number: 0303 123 1113  

Website: https://www.ico.org.uk