Pain Centre Versus Arthritis

Requesting PPIE support for your research

The Musculoskeletal and chronic pain patient and public involvement and engagement (PPI/E) research support activities are assisted by a dedicated Patient and Public Advisory Group (MSK PPAG).

The Patient and Public Advisory Group (PPAG) are an advisory group composed of patients, carers, and research participants. The group assist with MSK and chronic pain research for the Pain Centre Versus Arthritis at the University of Nottingham. They support all research activities by offering patient insight, this helps to support project proposal development and study protocol review, they review lay summaries and offer patient perspective to grant proposals. The advisory group members can offer valuable insight from the patient or carer perspective. The PPAG can also offer insight, and comment on the value of research or the impact of a study for patients, also how accessible the research outputs may be for example a summary of a scientific publication, for a lay reader.

The process

If you would like to request help from our Public and Patient Advisory Group (PPAG), please direct your request to the ms-msk-ppi mailbox.  

The PPAG administration will assign a reference number to your request (a.k.a. PPAG request number) and all subsequent communication with you or the PPAG contributors will include the reference number in a subject line.  

As the project lead or PI for the proposed project, you will be asked to complete a request form.

Please note that you will need to fill in the form using your nottingham.ac.uk email. If for any reason you are not able to use your university mailbox, please email us and we will accept your request in an alternative way.  

The form will ask you to provide the details of your request and it is very important what you need and why you are asking for input from the PPAG. 

You will be asked to provide the following information:

What support do you require from the PPAG? Please think ahead about the activities you may need in the future related to this request. For example, if you need a focus group meeting to discuss your grant application, will you eventually require a public co-applicant? 

Research Summary. PPAG members should understand the research topic they are asked to be involved in. Please describe briefly what your research is about. Please note that this is not the same as your lay summary. No more than 300 words.

Description of your request. We need to inform PPAG members of what exactly we want them to do. For example, consider answering the following questions (if applicable to your activity):

  • What will you discuss at the focus group meeting?  

  • What do you hope to get out of the lay summary review?  

  • Do you have any specific aims, objectives, or expectations? 

  • For continuous involvement, how frequently do to you plan to involve PPAG members? 

Any attachments relevant to your request. We allow the submission of files in the following formats: Word/PDF/Excel/Images. If your material is in an alternative format, please email us.   

Any lived experience or career requirements. Please specify if you have a target audience for your request. For example, if you need a “patient” or “carer” subgroup or a group with specific experience e.g. “patients with experience of Osteoarthritis”. Alternatively, we can contact the whole PPAG group for general reviews and comments.Please note, that our database may not have records about certain conditions. 

Location of the activity. Please specify where you expect to involve the PPI participants. Some possible locations are City Hospital, QMC or online via Teams. Please note that it is a standard pratice to cover expeces assiciated with travel and parking.

Timelines and deadlines. You will be asked to provide any relevant deadlines or timelines you may have. If you have any specific dates in mind, please make sure you provide those on the form as well. 

PPAG can support the following activities:

  1. Lay summary review – The PPAG will read the review and offer comments. Please consult the NIHR guidance on writing lay English summaries.
  2. Study protocol review – The PPAG will review the study design from the view point of patients and their carers both in terms of accessibility, compliance and impact.
  3. PPIE (Patient Public Involvement and Engagement) Clinic – A half day clinic where more than one study can be presented to the group – a type of dragons den.
  4. Focus Group Discussion or workshop – A one hour meeting, including a brief introduction from the study lead followed by discussion.
  5. Advisory group dynamics or research – Input on the best ways to approach PPI/E to achieve the greatest experience for the insight partners and the best impact for the outputs.
  6. Public engagement – Research presented to the group to inform and engage with the insight partners.
 

Complete the PPAG Request Form

Following the submission of your request, the PPAG administration and the MSK PPI/E Team Lead Prof David Walsh will review your request and be in touch to finilise the details before the PPAG members are invited to join the activity.

For the review of the research materials, the length of the feedback collection depends on the complexity of the request. Usually, 1-2 weeks is given to provide feedback. Any focus group meeting requires at least 2 weeks' notice. We aim to accommodate all requests from the researchers, but sometimes short notice meetings may not be possible if we think such an activity overburdens our PPI contributors. 

If required for an activity, we will ask our PPI volunteers if they consent for the researchers to have access to their contact details. If yes, a researcher will be able to communicate with the PPAG members directly. However, we need to make sure we meet the General Data Protection Regulation (GDPR) requirements and add the correspondence information to our records. Therefore, please ensure that you: 

  • Blind cc (bcc) recipients when emailing more than one person. 

Payment and expenses

The NIHR standard is to offer payment to PPI contributors for their involvement. Even though it is sometimes possible to get PPI participants without payment, we aim to meet the NIHR standards.  

There is no definite rule on how much the researchers should pay for PPI contributions, but NIHR guidance is often used as a benchmark. We highly recommend you also familiarise yourself with the university advice.  

Below is the guidance for the most commonly requested activities within the Pain Centre. Upon submission of your request, the PPAG administration will help you finalise the costs. 

It is a usual practice to process payments after the PPI activity using a non-staff expense claim form. A PPAG administrator will fill in the form and send it to the project code approver for authorisation. However, a PPI member may choose to accept or turn down any payment offered or request a lower amount. 

It is possible to request financial support from the university for your PPI/E request. Please visit this page for more information.

Check the payment rate for your activity

Pain Centre Versus Arthritis

Clinical Sciences Building
City Hospital
Nottingham, NG5 1PB

telephone: +44 (0) 115 823 1766 ext 31766
fax: +44 (0) 115 823 1757
email: paincentre@nottingham.ac.uk