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 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 MSK PPI/E PPAG can also assist with ongoing research development by participating in workshops or discussion groups and small group clinics. Our PPAG volunteers also act as steering group members and on some occasions can be included as a co-applicant on grant submissions.

The process

As the project lead or PI for the proposed project, you will be asked to complete a request form and, where appropriate, to provide a lay summary or further information. There are several useful articles on how to draft a lay summary online. We also have some simple guidelines for drafting a lay summary below and, we have a page on the website with summaries you can view as examples.

You should include in your request any specific PPI requirements for example if you need a “patient” or “carer” subgroup or for example a group with specific experience e.g. “patients with experience of Osteoarthritis” . Alternatively we can send to the whole PPAG group for general review and comments.

You should also include a timeline to guide the process and indicate when you would wish to have the responses back from the PPAG. We recommend you allow 3 weeks for the request to be received and circulated to the PPAG and for responses to be received and collated and/or for the admin team to arrange a clinic or focussed discussion.

It is important you consider what you need and why you are asking for input from the PPAG; Things to think about for group meeting requests and/or proposal/lay summary,

  • Why are you asking for PPI input?
  • What do you believe it will add to your research?
  • How will you measure and report the PPI impact? 

The PPAG can 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.

Should you require a Steering group/ Grant co-applicant support, this requires specially trained PPAG members or a commitment from the study lead to provide training and funding to support the ongoing training and support for the task. If you wish to approach a PPAG member to act as co-applicant or steering group member for your project you must first follow the request process for Study protocol review.

We can support the following activities

  1. Lay summary review – The PPAG will read the review and offer comments
  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.
 

You can submit your request for PPIE support by completing our online form.

Complete the PPIE support request form

Once you have submitted your request form indicating which service you need from the above list, the MSK PPI/E Team Lead Prof David Walsh or PPI/E Administrator will review the request and, depending on your needs, circulate your request and/or lay summary to the Patient advisory group. The administrator will then capture the responses from the group and provide a documented account for review. This information will then be shared with you.

If you wish to have a discussion group or clinic to present the work in more detail, we will present the brief research proposal you provide (1 page of A4 maximum) to the group and invite participants to volunteer to join a group discussion. The meeting will be booked around both the researchers availability and the PPAG members.

After any meeting, we will ask if the PPAG volunteers are happy to have their contact details shared with the researcher. Upon their agreement we then hand over the organisation of further work directly to the research lead with the understanding that all contact information must be handled in the strictest confidence and in accordance with General Data Protection Regulation (GDPR) requirements, you must blind cc all correspondence to keep the contact details of the patients private and it is a legal requirement that you cc' the PPI mail box (ms-msk-ppi@exmail.nottingham.ac.uk) If you correspond with any PPI members to allow us to add the correspondence information to our records.

Finally, for all requests you will be allocated a project reference code for the work, and you must quote this code in the header of all correspondence regarding this specific request/project to ensure we are able to file your project data appropriately.

What is a lay summary?

A lay summary is a summary of research written in simple terms to allow a lay person to easily understand both the aims of the work and the method of approach such that they are able to offer comment on the value of the work to patient groups and also to ensure the summary can be fully understood by a lay audience. Lay summaries should be written to ensure the complexities of the work and scientific terms are explained clearly to people who do not have prior knowledge about the subject.

A lay audience is diverse and can include members of the public, patient groups, and researchers in different disciplines that could be potential research collaborators.

The summary should clearly explain the research, why the researchers feel the work has value and how the findings may impact the research community and/or the quality of life of patient groups.

Typical summaries might discuss the purpose of the research, its relevance to patient groups, the proposed methodology and/or the findings.

Guidelines

1. Try to be concise in your explanation of the work. Try to describe the research in no more than 25 words and then use this short sentence as your introduction.

2. The text should provide information clearly describing the Who, What, Where, When Why and How?

  • Focus on the relevance (who and why), the application of the benefits of your research for patient groups; why is the work important to them?
  • Provide context (what, where, when), give everyday examples.
  • Paint a picture for the reader (how).
  • 3. The text should be ordered logically and flow naturally.
    • Keep sentences short and easy to read, explain without the use of complex grammar or excessive description. Be concise.
    • Avoid jargon and acronyms, ensure technical or scientific terminology is explained.
    • Use plain English.
    • The reading age of a lay summary should be 11-14yrs of age. Find someone who is not in your field to read over the summary and/or use a program to test the reading age.
 

Pain Centre Versus Arthritis - PPIE Strategy

Our strategy is to support people with chronic pain through a process of open and two-way communication to allow a better understanding of patient needs and priorities for research and quality of life. We will achieve this by facilitating public and patient engagement and involvement throughout all research activities and ensuring their opinions are embedded within all pain research at the University of Nottingham with involvement and collaboration across the School of Medicine and NUH (Nottingham University Hospitals) harmonising patient involvement of each and every pain research team, and across each disease. We will take a proactive approach to make our work as relevant, and our approach to research as transparent, to the public and patients as it is to all other stakeholders in chronic pain research.

Strategic priorities:

  • Create a supportive culture with opportunities for two-way communication.
  • Encourage partnerships between researchers and PPAG members.
  • Provide guidance and clarity to all stakeholders in the PPI/E process and instil the UK standards for good public involvement in research in all PPI activity.
  • Create a framework of training and support to inspire participation in the PPI/E process.
  • Drive forward PPI/E impact in research by creating measurable research goals.
  • Align our PPI/E activities with our partners (esp. School of Medicine, but also NUH, Versus Arthritis, etc) to grow a network of support and collaboration.

Aims

Our aim will be to support research leaders in the co-design of research by offering opportunities for training in the principals and practice of PPI/E whilst also continuing to grow and diversify our network of lay members to ensure sustainability. Our membership of Sharebank will encourage shared learning and resources to support our advisory group members perform effectively and with confidence. We will work towards a model of co-production, co-creation of research design and inclusivity of all stakeholders including lay partners, scientists, and practitioners to ensure greater depth of understanding and to capture all opinion to drive innovation in pain research from bench to bedside.

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