Public involvement in research

Public involvement and community engagement in research is a key priority for us as a Trust. We are especially keen for service users, carers, and members of the public to help design and shape studies, as well as taking part in them. We believe that all research is improved by working with people who have lived, or cared for somebody who has lived, through the subject being studied.

At CNTW we want to be a leader in research, because this enables us to make services better and to understand where we are making a difference to people’s lives. To do this we need to work with and involve people who use our services, their carers and families in our research work. We value everyone’s contribution, and it makes a real difference.

James Duncan, Chief Executive, September 2022

To support the development and expansion of PPI and peer research our ‘Research Involvement Strategy’ was updated in 2023

Current research involvement and engagement opportunities

There are a number of ongoing projects within the various research pathways in CNTW’s Research and Innovation department that might be of interest to you, you can find out more information below.

Further opportunities will be added here as they become available.

Get involved

To help support you to be involved in research and evaluation in CNTW, we have developed the ‘Research Involvement Hub’ (Ri Hub) to which you can become a member. Research Involvement Hub Enrolment Form

When you sign up as a member of the Ri Hub you will select your areas of interest and have the option to provide us with information about yourself*. We will use this information to enable us to send you information about research projects that may be of interest to you.

Members of the Ri Hub will be offered opportunities to be involved in both shaping and designing research and innovation projects. They will also receive a regular newsletter celebrating the impact of involvement and peer research with CNTW’s research and Innovation department.

The Ri Hub has been developed to support people with, and carers of, lived experience of autism, a learning disability, mental distress, or neurodegeneration to gain opportunities to:

  • Shape and design research and innovation projects,
  • Access accredited training to support personal development and skills,
  • Have opportunities at gaining paid roles in research,
  • To become peer researchers or researchers in their own right.

*Any information stored will be held on CNTW’s secure servers and only be available to authorised staff in the Research and Involvement department. You can request your data be removed at any time by contacting the department via [email protected]

We are also:

  • Actively seeking to understand what groups/networks/services are already in our communities to create links,
  • Seeking to strengthen links with universities and other organisations developing and leading in research in the region,
  • Developing training and development opportunities for public to expand skills and knowledge in research with Northumbria University.

For more information about the Ri Hub or public and patient involvement activities with CNTW’s research department please contact the team via [email protected]

Case register

The Case Register holds the names of volunteers interested in research into dementias and neurodegenerative diseases. When there is a suitable study, people on the Case Register may be asked if they would like to take part, and carers can also sign up to be contacted about research opportunities.

People can also sign up to be contacted about research using ‘healthy controls’.

Your information will be stored securely on a Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust server and is only accessed by authorised Clinical Research Network (CRN) staff. Your personal information will be held in an electronic folder and excel database. The database helps us search all our volunteers at once to match them to study criteria more easily.

For more information about the Case Register, or to sign up to be a healthy control volunteer, please contact [email protected]

Join Dementia Research

Dementia Research is a national service that enables you to register your interest and be matched with suitable research studies into dementia. This is available for volunteers aged 18 and over, from all ethnic backgrounds and cultures.

We also encourage carers, relatives, and the families of people with dementia to register.

Sign up or find out more

Accredited training

Working in partnership with Northumbria University we are delivering a programme of training for members of the public to develop skills and knowledge in research. This training has no academic entry requirements and currently offers up to 60 credits at level 4 (first year of University) through the completion of 2 modules.

Places on the modules are currently paid for through funded research or organisations meaning there is no cost to you the learner.

At this time the teaching takes place in the classroom at Northumbria University.

We plan to launch an online version of the training in the Autumn of 2024.

For more information on this module please contact [email protected]