Getting involved with research

Our patients and research

At Sussex Partnership we carry out research to improve the care we give to our patients. We are one of the top five mental health trusts for research in the country. Our research is varied and could be:

  • taking part in a new therapy
  • completing questionnaires
  • attending an interview or a focus group
  • trying a new drug

Take a look at our film showing the benefits of taking part in research

Students of the Masters Film Making Course from the University of Sussex, gave up their time for free, to make a film for us in 2018 to show the benefits of taking part in research. Led by Lily Beresford, the students worked with the research team and clinicians as well as service users and carers who have been involved in our research; Bryan Goodenough, Liv Pontin and Angie Culham. Liv had left Sussex after making our film and sadly passed away in 2019. We miss her and will always be grateful to her valuable contributions to our research.

You can see it on our YouTube channel here: https://www.youtube.com/watch?v=bVNS5RQgIC0&feature=youtu.be

Angie, a research participant, summed up the benefit of research in a nutshell, “Without research, there’s no progress!”

 

Patient involvement in research (PPI)

We work hard to make sure that patient and public involvement (PPI) is embedded within all our strands of research. We call these strands our research themes and they cover a range of mental health conditions and diagnoses. We are looking for people with lived experience of mental health difficulties to join our llived experience advisory panels and share their experiences, as this will help other people involved in research.

As a 'critical friend', what you tell us will help to make research more relevant and to improve the quality of treatment and care. We believe that if you ask people who have used or will be using the services/treatments you are testing, you will get a better result.

You will be invited to meetings which are relaxed and friendly and we’ll ask your opinion on how a research study should work. For example, we may look at the wording of the information or how we should explain the research study to people or what it is asking people to do. You will be paid for your time.

Meaningful and Effective Involvement - our Involvement Strategy

Our strategy emphasises involvement of people with lived experience across the entire research cycle. We work extensively with academic and clinical partners to support and develop involvement in their studies and train involvement consultants to contribute to research by taking up active roles in the design, delivery, reporting, critical appraisal, and evaluation of research activity. We are also active in governance and in developing our own research.

Critical Friend Model

We are founded on a critical friendship model of collaboration and consultation in which different and equally valued perspectives join hands in a shared learning journey. Our shared research goal is to improve the quality of research outputs and their translation into practice. All of our themed involvement groups share this ethos. Our critical friendship approach is backed up by a zero tolerance towards tokenism. We always want to work with people who want to work with us, but we also reserve the right to say no to working on studies that have no meaningful plan to involve us.

Working with the PPI Team

You will be working with researchers in the course of your work. We ask that if researchers have additional work that they would like you to undertake, that they arrange this through the PPI Team and not directly with you. This is because part of our role is to safeguard PPI members and respect the boundaries of what work people are asked to do what, and of course, to ensure that payment is made for work done. Please contact the PPI team if you are unsure about any piece of work that you are asked to undertake.

What do Research Theme Groups do?

Research Theme Groups are attended by PPI Members with experience of that particular area of mental health. Researchers attend at the early stage in their research to ensure PPI involvement from the beginning. The group may discuss the research broadly, for example, what members think of the study, or it may be more specific, for example the wording of a question. How often a theme group meets depends on the number of related research studies, generally they held every couple of months.

Once a study has funding, it may also set up a Lived Experience Advisory Panel (LEAP) to look at the delivery of the study.

What do LEAPs (Lived Experience Advisory Panels) do?

LEAPs meet to discuss individual studies. They include people or carers who have lived experience of that particular area of mental health and are interested in what the study is aiming to do. The LEAP may advise researchers on the development and conduct of a study, become involved as coresearchers. How often a LEAP meets depends on the study, it can be as often as every month or as little as twice a year.

Here are examples of what LEAPs do:

• Help develop a research question

• Help decide how to measure the answers to the question

• Help develop research grant applications

• Look at Patient Information Sheets

• Make suggestions about recruitment

• Look at therapy protocols

• Help train Research Assistants

You don’t need to be an expert on mental health or research to join a Theme Group or LEAP, it is your opinion and lived experience that counts. The researchers want to know what you think, so will ask for opinions on their plans for research bids, perhaps things like what language is used in materials for research participants or what questions should the participants be asked.

Other ways you might be involved

We also have a group of people who meet to discuss the strategic direction of the Involvement team; this group is called LEAF (Lived Experience Advisory Forum).

This group meets two or three times a year and looks at how PPI across the research department should evolve and develop. This group also has a role in governance and planning and how PPI relates to the overall objectives with the Research and Development department.

We have regular PPI Café meetings (these are unpaid) to keep people updated on or work and the chance to meet researchers and discuss research generally. 

The Youth PPI Café

If you are between the ages of 11 and 24, you can also get involved with our Youth PPI Café.

The Youth PPI Café is a collaborative peer-based network in Sussex that aims to engage children and young people in research that impacts them. This space is entirely youth-led and gives young people the opportunity to share what they feel is important to them, using their unique experience to guide clinicians and researchers to take research and service development projects forward. The young people involved come from Children and Young Person Services (ChYPs) & Child and Adolescent Mental Health Services (CAMHs), local schools, colleges and charities working with young people.

The overall aim of the Youth PPI Café is to ensure that young people can be actively involved in decisions on a range of research relating to children and young people, and use their unique lived experience to refine service development.

The Youth PPI Cafe supports and empowers more young people to not only become involved with research, but to be part of the co-development process of growing our work and steering research questions, and service development. The PPI café can really be part of an individual's recovery and as an agent of change within research culture - putting the voices of young people at the heart of every decision being made. Sessions are held usually once a month, and each session explores a different area of research deemed important by the group. As members of the Youth PPI Café, young people are awarded the title of “Research Advisor” which can be used on CVs and in references. Outside of sessions, young people can get involved in writing for our newsletter, about an area of mental health research they are passionate about, posting on our Instagram feed, joining in with feedback sessions to shape the group, and taking part in events.

 

If you would like to learn more about how you can get involved and help shape research, please contact:

involvementinresearch@spft.nhs.uk or give us a ring on 0300 304 0088 and ask for Sam Robertson or Julia Fountain.

You can also sign up to the Youth PPI Café through Linktree/YouthPPI

 

Patient feedback

 If you have taken part in one of our studies, we would appreciate your feedback via the Participant Research Experience Survey The information you provide will be collected by the Clinical Research Network and will be treated in the strictest confdence. It will not affect any of your further treatment or any future participation in a research study. 

Everyone Counts

We want to make sure that everyone who uses our mental health services has the opportunity to hear about the range of mental health and dementia research studies within the Trust. 

 

So we can make sure that all people who use our adult mental health services have an equal chance of hearing about research and finding out more about how they can take part, we would like to send them relevent information about research studies from time to time. If you receive this information are under NO obligation to take part in a research study and saying 'no' will not affect your clinical care. You can change your mind about being contacted about research at any time.

If you do not wish to be contacted about research you can let us know in the following ways:

  • by completing the online form at the bottom of this page
  • by completing and posting the Everyone Counts form to us at:

Freepost Plus RSUY-BTLR-BXAG
Research & Development Department
Sussex Partnership NHS Foundation Trust
Sussex Education Centre
Nevill Avenue
Hove BN3 7HZ

For more information please download our Everyone Counts leaflet and form.

Here is our Everyone Counts poster

If you have any further questions, please contact us  on 0300 304 0088 or email research@spft.nhs.uk

 

The Research Network

The Research Network is our community of patients, carers, staff, researchers - in fact, anyone who is interested in learning more about our research. If you want to hear more about research studies, news and events, please join our Research Network. It's a good way to keep up-to-date with research taking part within Sussex Partnership and opportunities to take part as well as receiving invitations to our events, such as our Research Network Conference.

Please click the link below to complete the online form.