Myth busting in PPI
The research question is being honed, the methodology discussed, review of literature underway, meetings with your supervisor on resources and approach have taken place, in the back of your mind you have an ethics application to submit, then when you think you’ve covered all the bases someone mentions PPI …
The following list is a sample of questions I have received over the years from researchers who are new to PPI and don’t know where to start. My answers might not be the ones you find on the INVOLVE website but they are intended to help you think about what PPI is and how you might approach PPI for your research.
Where do I start with PPI? Is it just needed to get through ethics and funding review?
The NIHR, medical charities and other public funding agencies are keen to encourage and support public involvement and participation in research. If you approach PPI as something just to get you through ethics or ensure the funding comes in then you are missing the point. If you approach PPI with an open mind and are willing to listen to views and ideas expressed by those that might benefit from your research you will find that you have access to answers, support and advice that can and will enrich your work. See examples here
I haven’t got the budget or time for PPI; can’t I just ask a patient I know?
Well yes you can just ask a patient but their views might be skewed, perhaps in your favour, as you may be providing their care. If you really only ask one person they you will only receive one point of view.
We can help you with facilitation of a meeting/focus group, this can be low cost, refreshments and travel expenses only. Document review is less expensive and you will receive very valuable comments from a range of non-specialists keen to help you. If you want to work with a specific patient group we can help facilitate that meeting and arrange documents to be collated and reviewed. Once you have received funding for your research set aside budget, time and resource to support on going involvement.
It’s just retired people who have time to do this?
True many of those who volunteer are retired but what is so bad about that? Many have a lifetime’s experience in varied walks of life; some are parents and grandparents, carers, volunteers, ex-CEOs, retired truck drivers all with different experiences and knowledge that you can draw on.
Some research does needs the views of the affected patient groups who will be taking part and if that is the case then you need to do some leg work to find those groups. But again we can help, we have links with local patient support groups, cancer services, rare disease communities; and social media is really good in helping to identify organisations that can help you.
We are building and developing a Young Person’s Panel so if you want to know what teenagers think about your research come and ask us.
Using traditional models to gather views such as meetings and focus groups tend to suit a particular audience. If you want the views of other audiences go to them, attend community meetings, visit schools, or go to sports clubs.
My research is highly specialised the public really won’t be able to help, so why do I need to ask them?
Okay, so the research you are undertaking may only involve one interaction with a patient, the collection of a tissue or blood sample for genetic analysis. But who will decide on the benefit to patients and the ethical use of the material? How will you convince patients to take part? Your funder might want to know that patients and public are supportive of this work? All of these questions can benefit from lay input. You will need to be able to present your work in lay language to non-specialists on funding bodies or ethics committees. Patients will need to be convinced that what you are doing is worthwhile and of benefit to health research, and provide consent. Poorly explained and badly written research protocols rarely get funded.
PPI is not about asking non specialists to critique your research. We really don’t ask estate agents to comment on ‘cellular pathways’ and ‘biomarker identification’, but we do ask them if they were asked to take part in this study, would they and what information do they need to provide consent.
I’m scared I don’t know how to present to a public group. I’ve never done this before.
You are not alone. We meet researchers all the time who feel like you do, and most after giving a presentation or facilitating a discussion, report how much they enjoyed it. The representatives from the panel who review documents and attend focus groups are really keen to help you and are interested in your research. Ask for help, we can provide guidance on presentations & documents; be open and honest with the people you meet. No one knows all the answers and people do respect that.
I’ve been involved in a trial steering committee with patient representatives. It wasn’t worthwhile for them and I’m not convinced we need PPI in research.
Helicoptering people into committees where the focus is on the ‘day to day’ operations of conducting the research is not always the best use of your time or theirs. Think about other ways to gain their insight, it can and will be valuable, but you need to set aside time to think through what the questions are that patients/public can help with and how you might get those views. Less formal meetings over lunch or early evening in a public place can be just as meaningful. Picking up the phone to discuss questions as they arise or sending out surveys to collect wider views are all valid methods of obtaining input. Don’t be constrained.
The public might disagree with my research.
Yes they might. But here’s the thing, it is your research, at the end of the day as long as you have listened and considered their views then the decision on how to proceed is yours to make. People will respect a clear and coherent argument.
My PI thinks this is a waste of time.
This is hard one. Start small, perhaps think of an area of your research that could particularly benefit from patient input, perhaps you need support to push through a policy change, or patient support to get funding. Find others who can support you. You need to be ready for that ‘aha’ moment from your PI when having patient/public support was crucial to the success of a project. Track what your involvement activities were, what was your aim, what do you do, what changed as a result, what was the impact. Gather the evidence to support your approach.
Where is the evidence for PPI?
True there isn’t a lot in published papers and we need help from researchers to start recording their involvement and impact in their research publications. We have lots of case studies from enthusiastic researchers who tentatively entered the PPI arena and came out really surprised and pleased they did.
You can also read ‘Power to the people: To what extent has public involvement in applied health research achieved this?’ and ‘Is it worth doing?’ Measuring the impact of patient and public involvement in research
We’d like researchers to record the questions they asked, who they asked and their experience, and what changed as a result of the involvement. Being sceptical is good but remember PPI is like everything else in life, you get out what you put in.
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.
How our PPI Team can help
The BRC PPI team is here to support you in involving the public in your research. We are happy to provide advice and support on PPI strategy development, grant applications, PPI training and to help you build PPI capacity in your research team. Through the CUH PPI panel, a group of more than 60 members of the public who are interested in getting involved in local research, we can directly facilitate some PPI activities 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 Treena 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. You can find the link to the dates here. 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?
We can 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.
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 Treena 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 Amanda or Treena 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. Treena and Amanda are 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.
Amanda Stranks, PPI Strategic Lead