These guidelines are intended to advise researchers who are interested in involving mental health service users on steering and advisory committees for research projects. The guidelines were developed in a collaboration between researchers and service users, but this is intended to be an evolving document, so if you have any suggestions, please feel free to get in touch using the contact details at the bottom of the document. This document is primarily aimed at researchers within the NIHR Maudsley Biomedical Research Centre (BRC), who will be able to access the support structures we refer to, but we hope others find it useful in a general sense.
A note on terminology
We have chosen to use the term ‘service user’ throughout this document as an alternative to ‘patient’. This is because our Biomedical Research Centre predominantly has a mental health focus. The term ‘service user’ is often preferred to ‘patient’ in this context. However, we acknowledge the limitations of using either term, since the NIHR Maudsley BRC also includes research into neurological conditions outside of mental health, where the term ‘patient’ might be considered more appropriate.
Everyone should have clear expectations about service user involvement. It is good to involve service users as early as possible within your project cycle. You don’t need to have a plan written down for the whole of the trial period, but you need to have some idea about initial tasks you want the service user representatives to provide input on – for example, looking over participant information sheets, commenting on methodology/measures, practising all aspects of service user-facing activity with a researcher. Service users can also suggest ways they could be involved. You also need some idea about your budget for user involvement and how to access these funds. For researchers at King’s College London, one way of doing this is to take draft project proposals to the Service User Advisory Group (SUAG) or the virtual FAST-R service before they go to the funder.
Everyone needs to have clear expectations about their involvement before the project is approved. Be clear about what you can gain from hearing the service user perspective and including this in your trial. The funder will need to know about this, and it needs to be achievable so the service user representatives can deliver their side of the work.
Broadly speaking, service users add value to a project through their understanding of the service user perspective. As well as being a sounding board, they may be able to provide solutions to problems. They may understand why participants might be reluctant to attend research interviews or complete questionnaires, and may be able to suggest ways to encourage participation.
If you are a researcher or a clinician, you may be able to recruit service user representatives from among your own current and former study participants or patients. The advantage of this is that they know you and can speak from personal experience about the condition being studied and the treatment process.
You may also be able to recruit other experienced service user representatives from the Service User Advisory Group (SUAG) or elsewhere within the university. Although they may not have personal experience of the condition being studied, they will be used to participating in meetings and discussions on other research projects and can give their perspective as service users.
It could be helpful to have representatives from both of the groups above, providing a mixture of experience.
Recruit representatives who will be comfortable and confident in playing the role in the trial that you are looking for. Do not recruit people who are overtly antagonistic to your research area or to the ethos of your study. For example, if you’re funded by a drug company or using a medical model (two things which are potentially controversial), then state these as soon as possible, so that potential representatives can make up their own minds. These factors can be assessed by meeting prospective members for an initial chat before recruiting them. Most service user representatives will be supportive of research which will ultimately help other patients in future.
Our consultation with the SUAG has provided the recommendation that, while carers are also an important group who can offer a useful perspective, they are not substitutes for service user representatives. You may wish to include one or more carers in your group, but they should be in addition to users with direct experience, rather than instead of them.
Having more than one service user representative means they can support each other and feel more comfortable challenging jargon, practices, and governance in a group dominated by professionals. Where one service user might feel unable to address one issue, another often can. It also gives the committee the benefit of different perspectives.
You may wish to recruit a pool of people who can help with different tasks on the project. If someone is not available to come to a meeting, another user representative may be able to stand in for them.
Expectations need to be managed on both sides, especially where both professionals and service user representatives are new to user involvement.
Assess which areas of the project service user representatives are realistically going to be able to influence over the course of their involvement. Acknowledge this upfront and speak to potential service user representatives before you recruit them. Don’t make vague promises that you can’t keep – if you have low expectations of how much influence service user representatives can have on certain aspects of trial management, it is better to state this upfront and focus on what people can influence. More experienced service user representatives will be able to suggest ways in which they can be involved.
Make sure the prospective service user representatives are aware not only of the work involved in their role but also the timescale of their involvement, which may vary from one brief consultation on a leaflet to participation in a management committee for the duration of a trial. Some service users may make an open-ended commitment to membership of an internal committee. Different people may be involved in different tasks, so if you are able to offer options, users can choose a type of involvement that suits them.
It is also important to discuss payments and expenses in advance - see 'Payments and expenses' below.
The trial manager or the meeting organiser is ultimately responsible for the experience of the service user representatives. It is their job to make sure people have the support to be able to understand and contribute.
As part of recruitment, establish each user’s needs and any adjustments needed for meetings or other work on account of their mental health condition or other disabilities. It is important to be aware that users may have more than one health issue or disability.
The trial manager should be responsible for pointing out (where necessary) the parts of documents and/or supplementary material that service user can influence. Make sure these documents arrive in a timely manner (i.e. in good time before the meeting and in an appropriate format). Remember, some people find it easier to read printed documents, so make sure you have enough printed copies at the meeting.
It is good practice to provide training (or at least a good comprehensive briefing) to both the service user representatives and the professionals who will be involved in the trial or committee. This is because service user involvement places additional responsibilities on all those involved to ensure it works effectively.
The process of having service user members on a committee should be enough to encourage all members think twice about how they say and present things. In line with this, make sure all members know that service user members will be present at the meetings. Professionals may want to adjust the way they word things (use more sensitive or less jargon heavy language).
Service users usually have a different relationship to this process than researchers or clinicians and it’s important to be aware that they may have had bad previous experience of something which is being discussed at the meeting. Provide support, as the service users’ perspective is invaluable to making sure the trial runs effectively.
Sometimes service users’ suggestions may seem challenging, but they are made for good reasons. Therefore it is important to reflect on service users’ contributions. Project evaluation also provides an opportunity to assess the value of their input in a more formal way.
Ensure that any adjustments needed are planned in advance.
Acknowledge that trial meetings can sometimes be long and tedious for everyone, including service user representatives. For large multi-disciplinary meetings such as a trial steering group, most attendees (professionals and service user members) are not expected to follow and understand the whole meeting. Instead, people will be able to speak for one or two items on the agenda. Often, large amounts of paperwork are generated in advance of meetings. Ensure that you highlight the most relevant parts for service users to look at, rather than expecting them to read it all.
The speed or length of time of the meeting might be an issue. In longer meetings, add in a small break for everyone. Advise representatives that they can step out or leave the meeting if they need to.
It can be useful to have a dedicated slot on the agenda for service user representatives, to ensure they have the time and space to make points that occur to them. If service user representatives have not had a chance to feed back or have their say during the meeting, then offer them a chance to debrief on the phone or somehow after the meeting – and feed their comments back into the next meeting.
Offer pre- and post-meeting debriefing and support to service users in any case, as they may be affected by the issues discussed at the meeting. To fulfill their role, they need to connect with memories of their own experiences, which could be upsetting. The organisation is responsible for providing adequate support.
Update this at every meeting as any questions arise about a term. This is useful for everyone, not just service user representatives! Be prepared to write a short description of acronyms - it’s not enough to just spell it out. An example of a glossary entry could be something like “NIHR = National Institute for Health Research – a part of the health service which funds health research”
This can be the most complicated aspect of involvement.
Determine remuneration in advance. All members of the project are being paid to bring their expertise, and this should be no different with service user representatives. There are standard scales of payment for user representatives, such as those available on the INVOLVE website (invo.org.uk).
Agree in advance what expenses you will be paying (e.g. travel, parking, and childcare). Always ask individuals that you will need them to bring receipts to meetings in order to pay the expenses. Some people prefer to use their own transport and this can make the payment of expenses more difficult. Ask the person in advance if they intend to use their own car to get to the meetings, and if so, work out the mileage claim in accordance with the college expenses policy.
If the university pays expenses via BACS with a significant delay, inform representatives in advance. Late payment may be a significant barrier to involvement for people on low incomes. It may sometimes be appropriate to pay expenses in petty cash (for example, when payment of late expenses would cause people to be out of pocket). Whichever method you use, make sure the individual receiving the payment signs for any expenses/payments received. Create/adapt a receipt form (two copies) for this purpose, this should state the date, name of meeting/task, and give space for you both to sign. Give one copy of this to the service user representative, and keep the other copy for your own project records.
Finally, payments may affect individuals’ benefits claims, so speak to the individual if they have any concerns about this. Bear in mind that benefits is a complex and ever-changing issue. If you are affiliated with KCL or the NIHR Maudsley BRC/U and need any advice, contact us (details below).
Find appropriate ways to acknowledge the contributions of service user representatives, in discussion with them. This could include thanking them in meetings and elsewhere, subject to the need for confidentiality (see 'Confidentiality' below).
Don’t assume that service user representatives want to be known as ‘service user representatives’ to anyone outside the project. People have their own private lives and careers and these can be quite different to the roles they wish to adopt in the meeting. There is still considerable stigma attached to mental illness (and other illnesses) in the wider community, which can unfortunately affect work prospects, relationships and other areas of life. Consider this in your email and other communications. You may need to tailor your subject lines, and always use ‘BCC’ for emails to user reps unless you have permission from the service user to do otherwise.
Don’t ‘out’ anyone as a service user in public. Let the person choose whether they wish to do this, in their own time and at their own pace.
For more information or to make suggestions for how we can improve these guidelines, please contact:
Sagar Jilka, Research Associate & NIHR Maudsley BRCPCIE Theme Coordinator, firstname.lastname@example.org 0207 848 0219
Kings College London also has a disability advice service which may be able to help. For enquiries or to make an appointment email email@example.com or call 0207 848 7018