What does good patient and public involvement look like?

Patient and public involvement (PPI) is a crucial part of our research process, so we asked the patient experts who sit on our advisory panel, Sylvia Bailey and Becky Harmston, what researchers can do to make sure they are properly involving patients and service users in their work. There are many different models for patient involvement which can work for different projects – in this blog, Becky and Sylvia share their thoughts on what has worked well from their experience.

How can a researcher better engage service users in developing the research bid?

Approach local patient groups at GP surgeries, local patient involvement groups or charities in a friendly and proactive manner with patient friendly information so that it’s easy for patients to understand your research. You can even ask family, friends and colleagues to read through a research plan or protocol before you approach patient involvement members as these people are also service users and patients. I think, however, that the best patient involvement feedback usually comes from patients who have lived experience of the condition or those who have been a carer for someone with the condition. Please don’t rule out working with “newbies” to patient involvement or to working with “experts” in the field who have experience of grant funding applications, reviewing and ethics. All patients provide a unique insight into the research as everyone’s own experiences are individual to them.

Don’t be afraid of approaching people for help with research. Many patients and their families are interested in improving care for patients who are living with their condition and are happy to talk to researchers about their experiences. Many universities and hospitals have patient involvement panels and the larger institutions will probably have a main point of contact for researchers looking for public and patient involvement. If not, we would recommend finding out if your place of work has a newsletter which goes out to patients by email. There is also the INVOLVE People in Research website (https://www.invo.org.uk/communities/information-for-members-of-the-public/) where you can place an advert looking for patients to help with a study

How can researchers effectively implement PPI in their bid?

We would say approach patients and carers early on in the study with a clear plan for the type of involvement you expect from them including how many times patients will be involved in the study, the type of engagement, the role of patients in the study, if you require patients with a specific experience and how many patients will be involved in the study and steering group. In some cases, patients are happy to become co-applicants on funded studies. Researchers need to be clear if payment and expenses such as travelling, carers and childcare will be covered or not, as this can be a barrier to patients taking part in research.

It’s fine to write a role profile and person specification if you are recruiting patient involvement members to sit on the advisory group, steering group or trial management group as it can be very beneficial for the patients to know what level of experience they need to take part in the research. If you are recruiting patients to take part in focus groups or individual interviews, then personal experience of living with a condition, caring for someone who has it or having an interest in the subject is useful.

Always aim to recruit at least one more patient involvement member than you think. You need to allow drop out due to illness or personal commitments, which can prevent patients attending meetings. Involve PPI members in the design of the patient involvement in your project as patients will advise on what will work best in your study and how to keep patients engaged. At this stage, the researcher can edit the PPI plan for the study and also produce a terms of reference for patients involved in the study if requested, which confirms their role and activities for the duration of the study.

Once you have patients involved in a study, keep in regular contact even if the project is in a quiet period, ask if the PPI members have any training requirements and actively involve patients in the ongoing stages of the study by email, teleconference, Skype or face to face meetings. If a patient involvement member is unable to attend a meeting, follow up after the event and remember to send hard copies of documents to members who do not use computers. One of the main aspects of patient involvement work is that patients should not be out of pocket for taking part in a study so make sure that expenses claims are up to date. Expenses should include postage, printing, childcare, travel, parking and carers expenses.

Always try to involve patients throughout all stages of the research. We know from personal experience that there is nothing worse than active involvement at the beginning of a study which fades away as the research progresses. Patient involvement members are often happy to engage and support patients who are taking part in the study and to also be involved in aspects of the study such as focus groups, analysis of interviews, writing of patient facing documents, ethics meetings and writing final research summaries. Also remember that many patient involvement members will have extensive contacts who can help during research projects.

Taking the steps outlined above will enable participants and researchers to understand the value that PPI has in the development of a research proposal.

What is the purpose of the plain English summary?

Plain English summaries are meant to be a short description of the research which could be used as a standalone summary of the research on a website. What does the researcher need to keep in mind when writing the plain English summary (PES)? 

The PES is meant to be understandable and clear to patients, carers and members of the public. The information in the summary needs to be targeted for a population with an average reading age of nine years old. Many national news publications use that sort of approach to test whether they are writing in clear, straightforward way. A good PES answers the “why, how and what” reasons for doing a research study. Interested people need to know why the researcher is planning to do a study, how the study will be done and what the researcher hopes to achieve at the end of the study. If a summary is written well, then it can be used as a standalone description of the study on a website.

The PES is one of the hardest parts of an application to write and can be very time consuming. I [Becky] am a co-applicant on a number of NIHR funded studies and one of my roles as a patient involvement member is to edit and rewrite the summary so that it’s understandable to patients and carers. One of the approaches that works best for me is to start with all of the information that I would like to include in the summary, even if the starting text is longer than the word allowance. I then try and filter the information into the why, how and what I hope the research will achieve categories, but I also make sure that patient involvement is mentioned in the study and also the benefit of the research to patients. It’s a time consuming, but necessary task to remove medical and scientific jargon with simple English terms and language. Once the summary has been edited, it’s fine to resend it to patient involvement members for reading and further work if required before the final version is accepted. Ensure that simple English is used in the PES. If any scientific terms have to be used in the PES, then these should be fully explained or clear to the audience.

What are the common mistakes/issues you have seen in previous applications?

1. No patient involvement in any stages of the study at all.
2. Confusion regarding the term ‘patient involvement’ in research. Patient involvement in research is defined as patients taking part in the design and implementation of a research study and is different to patients who are recruited to take part in a study.
3. Including “old” patient involvement, which was used to support ideas in earlier studies. Scientific research, treatments and patients’ experiences move on over time and researchers should always make sure that their patient involvement is up to date.
4. Recruiting too few patient involvement members. Always try and have one more patient involvement person then you expect to need during the study so that you always have more than one PPI member involved during a meeting or when advising on a project.
5. Not using appropriate PPI recruitment methods to the project. The research needs to involve PPI members who can relate to the research project and offer genuine perspective based on their unique experiences.
6. Include patients in every aspect of your study if they are happy to be involved. PPI members can attend and support dissemination events and committee meetings. Patients and service users like to talk to patients that have been actively involved in research.
7. Empty promises such as a named contact for patient involvement support that doesn’t materialise, failure to provide expenses or failure to pay expenses on time.
8. Lack of engagement with PPI members and leaving them hanging around without actually knowing what is happening in the research or if the project is ongoing.
9. Failure to arrange meetings or deadlines to fit in with the PPI members work and family commitments or even failure to work with a patient to help them attend a meeting. It’s very important to make sure that patients with long term conditions are able to attend meetings in accessible locations or by another method such as teleconference or Skype. PPI members may also have children so meetings could be arranged within school hours, weekends or evenings.
10. The use of complicated medical text in a document. PPI members can only provide help and support in a project if they understand what the project is about. One of my major dislikes is researchers copying text straight from the main document into a plain English summary.
11. Failure to talk to patient involvement members about issues with a project or the project ending earlier.
12. The use of too much jargon – it is not always necessary.

What would you like to see differently in proposals going forward, with respect to PPI?

1. A clear role profile and information about roles in the study for all patient involvement members.
2. Consideration of illness, access requirements and dietary issues for people taking part as PPI members.
3. Consideration of burden, meeting times and schedules for PPI members.
4. Researchers who send calendar invites about meetings in advance, and only cancel meetings if absolutely necessary.
5. Engagement of PPI members early in the study development and during all stages of the study.
6. Clear description in the PPI section of the application form about how researchers have been involving patients throughout the proposal and the relevance of their involvement.
7. Clear information so that researchers know that PPI is different from recruited patients taking part in a study.
8. We think serious thought should be given for PPI members to feel that they have contributed to the application on a significant level, given their role in ensuring the research remains patient centred.
9. Follow INVOLVE guidance to successfully implement updated PPI measures.