Patient and Public Involvement in your research

Don’t forget – it’s not just the PPI team who can help you; we can also draw on the skills and expertise of the CUH PPI panel, a group of more than 70 members of the public who are interested in getting involved in local research and who can get involved in PPI activities directly with your team. We can also provide advice to help you involve specific communities or patient groups and connect you with groups we know through our network.

Can the PPI team help me design a PPI strategy for my research project?

Yes, please! We are very happy to help researchers at all career stages to involve people in their research. We can provide advice on creating a PPI strategy for your project, as well as how you can describe this strategy for your research proposal. Please get in touch with Amanda or Georgina and we can discuss how to involve people in your research.

I’m working on a research proposal (or planning to)/not yet funded and need some free or low cost ways to involve the public to inform my application. Can you help?

Yes. Our PPI Team can provide advice on ways to involve people in your research that are free or very low cost. We also have a large panel of people (the CUH PPI panel) who are interested in getting involved in research and there are several ways that we can involve them that will cost you no more than a packet of biscuits.

Can the PPI team help me calculate PPI costings for my grant?

Absolutely. Please get in touch and we can discuss what your project needs and how much you should request to cover it.

Can you and/or the panel write the PPI section of my grant for me?

No. However, a member of the PPI Team will be very happy to review what you have written and it is possible to send PPI sections (or even whole applications) to be reviewed by the panel.

My funding application form asks what training I will provide my PPI members. Is this something you can help me with?

The PPI team have been working on creating training support for members of the public involved in research projects on campus. Please get in touch with us and we can discuss what we are able to offer further.

I would like to include a PPI post in my research proposal, can you advise on this?

Absolutely! The PPI team can help you write the role description for such a position, advertise the post through our networks, assist with interviewing and provide training and support to your recruited team member.

I don’t know anything about PPI! Where can I find out more?

The PPI team run several, free ‘Introduction to PPI for Researchers’ training courses on campus each year. These are currently all online. We also run courses on more specific topics, including how to run a PPI panel. You are welcome to get in touch with the PPI Team to discuss your training needs.

Can the PPI team organise/run my patient event for me?

The current pandemic means that all public-facing events are currently on hold. However when restrictions are lifted, we will again be happy to provide advice on style and format of patient events, connect you with patient groups we know, help you to publicise your event through our public networks and assist with incorporation of feedback into your research project.

If your event is local and held during business hours, and we have capacity, we may be able to help you facilitate your event. However, we are a very small team and do not have the capacity to organise, fund or run events on your behalf. If you are planning a large patient engagement event as part of your research proposal, we recommend that you cost a PPI post into your project. The PPI team can help you write the role description for such a position, advertise the post through our networks, assist with interviewing and provide training and support to your recruited team member to help them to arrange such an event.

I am currently working in health research. Can I join the panel?

In most cases, no. Patient and public involvement (PPI) in research aims to get outside/lay views on our research projects, which already undergo peer review by other researchers at various stages along the research journey, in order to benefit from the lived experiences of those who have health conditions and to understand how our research is viewed through public eyes. Researchers generally have other professional opportunities to influence research.

The panel are regularly invited to review documents for planned or ongoing research projects. As health research is competitive environment, with many groups aiming to gain funding or publish papers on similar topics, it is important that documents shared with the panel remain confidential. To make sure that researchers feel able to continue their research without fear of another group using their work without permission, we do not typically allow those working in research to join the panel. For similar reasons, we also discourage those currently employed by the pharmaceutical industry from joining. However, if you have lived experiences of a health condition or healthcare, separate from your experience as a researcher (e.g. as a patient), and wish to get involved in research in that capacity, please contact a member of the PPI team and we would be happy to discuss whether alternative arrangements can be made for your involvement.

Involving the CUH PPI Panel in my research

I need my response in less than 2 weeks. Can I still ask the panel for feedback?

Meaningful PPI takes time – both because your contributors need adequate time to reflect on the project in order to provide their feedback, but also because we value our contributors’ time and we can’t expect them to instantly provide feedback with no notice. You also need time to be able to reflect on their feedback and adjust your research in response. As such, we will not send research proposals out to the whole panel with a less than two-week deadline. However, if you need to get some feedback quickly, we will work with you where we can. If you have a short deadline, please get in touch with Georgina or Amanda who will discuss your requirements with you and see what we can organise.

Why do I need to submit background information and a lay summary if my research proposal doesn’t require one?

It is much easier for our PPI contributors to provide quality feedback to a project when they understand the context that the research is happening in – remember that all contributors (including the PPI team!) can only provide feedback about the research based on the information you have provided us. Sometimes understanding why you have chosen a particular subject and the research that has preceded it can be really helpful in better understanding the project overall. Likewise, a lay summary is essential to help the panel understand your research and helps you to practice your ability to discuss it with a lay audience.

What if the panel hates my project?

Members of the panel aim to be your ‘critical friends’ and very much want to see your research succeed. Sometimes comments might feel challenging or questioning, and the intent behind this is always to help you think about how to make your research stronger and more appropriate to the end users. If you feel that you have received lots of negative comments, please get in touch with the PPI team and we will help you work through the feedback and discuss how you can use it to improve your research.

How much does it cost to use the panel?

If your research is funded or supported by the NIHR Cambridge Biomedical Research Centre (most researchers whose research involves patients on campus), there is no cost for you to involve the panel in your research. We cover the reimbursements for panel members to attend focus groups organised by the PPI team using PPI meeting rooms. The only cost to research teams is for refreshments for panel members attending focus groups. If you wish to involve panel members in other activities as part of your research (for example, as a representative on a steering committee) then it would be up to you to discuss and cover any payments or reimbursements for those activities.

Can I use my own facilities for the focus group?

Yes, you are welcome to use your own meeting rooms for a focus group. However, if the facility you wish to use is not on campus, you will need to cover the travel reimbursements for the attendees through your research funds. Similarly, you will need to help us provide directions to the panel in our invitation.

I didn’t get my funding/ethics approval. Do I still need to feedback to the panel?

We are sorry to hear that. Yes, we would still like to be able to feedback this news to the panel and hear what you plan to do next. Grant/ethics rejections are an unfortunate reality of the research process and the panel want to hear about the outcomes of the research they support – both good and bad. The team is also very happy to discuss the PPI feedback from your application and where it could be improved, if this area was mentioned in the feedback.

Can I put panel members as co-researchers on my grant application?

Under a minority of circumstances, it may be possible to invite a panel member to be a co-researcher/co-applicant to your project. However, we will only invite panel members to do this where we feel that your project could truly benefit from a public co-applicant and where you can demonstrate that you plan to involve them to an extent that reflects that of a true co-applicant. We cannot give you the name of a panel member to add to your application for this purpose (yes, we have been asked this before!).

Is my project confidential?

Yes. In order to become a member of the CUH PPI panel, panel members must sign an agreement not to discuss or share any of the projects that they are involved in. The PPI Team discuss this requirement with all new members and explain why privacy and confidentiality are important. Similarly, the PPI team will not discuss the specifics of your project with anyone without your consent. Occasionally we meet other researchers or research support staff that we think could benefit from talking with you – however, we will not introduce them without first gaining your permission.

General questions about PPI

My project doesn’t use human participants. Do I still need PPI?

Need? Maybe not, if your funding body doesn’t require it. Could it still benefit from involvement? Almost certainly! If your research will ultimately influence the treatment of patients (as we hope it will!) or has used samples or data that came from patients (even in another study) then you should be involving patients and the public in the research. All research can benefit from involving the public, even if just to write a lay summary and assist with the dissemination plan. The PPI team are happy to help you find ways to involve people in your research, however obscure, and you will be surprised at the valuable perspectives you gain from the process.

Some of the suggestions made by contributors are contradictory/impossible to implement. What should I do?

It is true that asking lots of people for their opinions will give rise to… lots of opinions – the classic one being a combination of too long/too short/just right replies! Ultimately, you are the final decision-maker and can choose to implement the suggestions and feedback that are right for your project. Where this happens, it can help to explain to contributors why you took the decision that you did (for example, you couldn’t make your document longer, because there is a word limit). You can also take a lot of the information on board in other ways – for example the feedback may make you aware of useful information that you can include in your patient documents that answers a particular question or refutes a common misconception. The PPI team are very happy to help you review your feedback and help you use it to improve your research.

The link below will take you to our Patient and Public Involvement pages, with information on:

• Taking part in research
• Patient Led Research Hub
• Training Opportunities
• Case studies
• Jargon-buster

We hope to see you soon!