TASC Patient and Public Involvement guidelines

1. Introduction

These guidelines provide supporting information for the TASC Standard Operating Procedure for Patient and Public Involvement in Clinical Research (SOP 066) and the TASC PPI Plan Template for Researchers (Doc Ref 128), which can both be found on our SOP and templates start up web page.

INVOLVE guidelines define public involvement in research as:

"research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them." 

Involving patients in early research planning stages and throughout the research cycle can greatly increase the quality of a research application and the relevance and acceptability of the research to patients.

TASC’s vision is for all research to be carried out “with people, for people”. To promote the implementation of PPI and to improve the quality of research applications, TASC has appointed a PPI Manager to support PPI actives in early research planning stages. Researchers are strongly encouraged to utilise the PPI support available and to plan PPI in research proposals as early as possible.

PPI in research should be performed to the NIHR UK Standards for Public Involvement in Research

The TASC PPI Manager can be contacted for PPI planning support: public-involvement@dundee.ac.uk

2. Pre-award PPI Support

Researchers are encouraged to contact the PPI Manager at the earliest opportunity during the development of a research project to discuss their PPI needs and to utilise the PPI support that is available. To initiate PPI support, please send an overview of your project or a draft grant application to the PPI Manager. If PPI plans are known, researchers can complete the TASC PPI Plan Template for Researchers (Doc ref 128) and this can be sent to the PPI Manager along with the research application for review. If PPI plans are not known, the PPI Manager will arrange a meeting to discuss the project proposal with the researcher and suggest a PPI plan.

The TASC PPI Manager can provide support on:

• Accessing existing TASC PPI groups
• Forming small project specific PPI groups
• Communicating with patients and patient charities
• Arranging and leading PPI meetings pre-award
• Facilitating document reviews
• Assisting in the development of a PPI plan for research applications
• Provide advice on how to prepare costings for PPI in research applications

TASC identified that a barrier for researchers to implement PPI at research planning stages was a lack of funds available to facilitate pre-award PPI. To overcome this barrier, TASC have a small budget to support PPI meetings at research planning stages. It also funds a small amount of TASC PPI Manager time to support PPI activities during the pre-award stages. This pre-award PPI support is available at no cost to the research team.

3. Pre-award PPI Meetings

Researchers should contact the PPI Manager as early as possible ahead of the application submission deadline, to arrange a pre-award PPI meeting.

Accessing TASC PPI groups:

There is an established TASC PPI group, made up of members of the public and patients from a range of different backgrounds. This group is available to give advice and input from a lay member perspective to research proposals and to review project lay summaries.

See TASC patient and public involvement web page.

Establishing a new PPI group:

There are multiple options for contacting patients or members of the public. The PPI Manager will discuss your project PPI requirements and can assist with the creation of a project specific PPI group. Please be aware that reaching relevant patients to form a PPI group can take time and researchers are encouraged to plan PPI recruitment in advance.

Pre-award PPI Meeting Format:

Researchers who would like to arrange a meeting pre-award with either the TASC PPI group or a new PPI group should complete the TASC PPI Plan Template for Researchers and ensure there is enough time to plan and host a meeting.

The TASC PPI Manager will arrange a suitable time and set up a meeting. This is dependent on the capacity and availability of the patient group.

At the PPI meeting, the researcher will be expected to provide a short presentation (10-15 minutes) to introduce themselves, the project background, aims and design.

The researcher is also asked to highlight questions or issues that they would like to discuss with the group; this may be circulated to the PPI group in advance of the meeting. This can help to focus the PPI discussion on topics that need to be addressed within the application.

The PPI Manager can attend pre-award PPI meetings, to take meeting minutes and to facilitate PPI discussions. The meeting notes will be circulated to the researcher shortly after the meeting.

4. Planning PPI post-award

The TASC PPI Manager’s role is to support and establish PPI at pre-award stages. Post-award, project specific PPI activity is the responsibility of the research team and all post-award PPI activity should be costed in the research application budget.

Please see the TASC PPI Plan Template for Researchers to develop a plan and budget for PPI activities. Researchers are encouraged to contact the PPI Manager as early as possible to discuss your PPI plans and to ensure access to the full range of PPI support available.

PPI can be embedded throughout a research project. The IRAS submission form categorises PPI into design, management, undertaking, analysis and dissemination. Examples of PPI activities for each category are:

PPI in research design

• Inform research priorities and identify what is important for patients
• Inform research questions & outcomes
• Input into appropriate research methods
• Assist with recruitment and retention strategies
• Review or develop questionnaires
• Inform where PPI can be embedded into the project
• Review or develop plain English summaries
• Input into the funding application
• Have a patient partner co-applicant on the funding application

PPI in research management

• PPI member on project management group or steering committee meetings
• Review or development of patient facing documents, such as invitation letters, participant information sheets, consent forms
• Input into protocol development and patient pathway
• Production of updates/newsletters for research participants

PPI in undertaking research

• Input into interview, survey or focus group design
• Input into data collection methods
• Input into communication with research participants

PPI in research analysis

• PPI member on data monitoring committee
• Input into developing themes from the data
• Input into interpretation of data from a patient perspective

PPI in research dissemination

• Advise on ways to disseminate information to different audiences
• Advise on key messages to be communicated and where this should be shared
• Input into research communications and/or presentations
• Development of information leaflets, website
• Input into disseminating information through patient charities or support groups

5. Budgeting for PPI

PPI guidelines state that PPI representatives should be reimbursed for their time input and the experience they provide. Researchers should ensure that they approbatively budget for the PPI activities described in the PPI plan. Many funding bodies are looking for a robust PPI plan, accompanied by a budget to support these activities. Please contact the PPI Manager for any queries on PPI budget preparation.

TASC PPI payments follow the NIHR Payment Guidelines for Researchers:

These payment guidelines are based on the length of time an activity takes. Please see the table below for examples.

PPI payments should also cover direct expenses, such as travel. If meetings take place face to face you may want to budget for subsistence depending the type and duration of meeting.

If meetings are taking place virtually, the NIHR guidelines suggest that an additional £5 is added to the payment rates above for each meeting. This is to cover working at home costs such as laptop usage, stationery and Wi-Fi costs.

It is good practice to have a policy on payment and recognition in place prior to involvement, so that members know in advance what is being offered and are able to make an informed decision about getting involved.

The University of Dundee can process PPI payments by either purchasing online Amazon vouchers or by setting up bank transfers from the grant budget. Researchers should discuss payment preferences with PPI members before involvement begins.

BACS transfers can be processed through the University of Dundee external expense form.