Training case study 12

Introduction to the research process – Diabetes Research Network

Summary
This one-day introduction to clinical research for service users involved in the Diabetes Research Network (DRN) has a focus on the early stages of research: how to come up with a question and how to develop a research protocol (research design).

Who is the target audience?

The training is intended for service users involved in the work of the Diabetes Research Network. Some are members of regional user groups that meet regularly, and some are members of a national group that carries out all its work virtually.

What does the training involve?

The training provides an overview of how research questions come about and how to design clinical trials, with some presentations and interactive workshop activities. It includes:

• presentation and discussion about where research questions come from
• group activity to see how the design of a blinded, randomised, controlled trial would work in practice
• introduction to research funding and how the process works
• presentation and discussion of ethics committees and what they do
• review of patient information sheets and lay summaries, what they ought to contain and what people need to look for – small group activity
• introduction to research terms and lay summaries, with a focus on the use of plain English
• discussion of what makes a successful study and a comparison of the views of service users, researchers and funders
• presentation from a local researcher about the variety of studies currently being delivered in the region, plus a question and answer session.

Supporting materials are circulated during the training, including a ‘Glossary of Diabetes and Clinical Research’, and if necessary a ‘Glossary of Acronyms and Abbreviations’.

What are the outcomes?

Service users report increased confidence and enthusiasm about their involvement. At present they are mostly involved in commenting on research at the design stages, and reviewing research protocols and patient information sheets. They have a better understanding of what they can influence, where this will fit into the research cycle, and what researchers are doing.

Who developed the training? Were members of the public involved?

The programme was developed by a number of staff in the DRN – people skilled in training to ensure that it is interactive and delivers the desired outcomes. The training was developed in response to an identified need: service users were asked about their training needs after some experience of being in their role.

Who delivers the training? Are members of the public involved?

The training is delivered by a combination of local and national DRN staff (including the DRN Training Officer, the DRN Patient and Public Involvement Lead, and a local DRN manager). Experts from the local area often deliver sessions on research ethics and the role of other regulatory bodies. Sometimes a local service user delivers a session describing their experience of assessing protocols and patient information sheets.

How do you support participants after the training?

Participants are asked to be involved in studies soon after the training, to help transfer the theory into practice. Further training is offered to develop other skills or knowledge.

Have you evaluated the training?

Feedback from all participants is very positive. They often comment that the length of sessions and the mix of topics meet their needs, and that the training gives them the skills and confidence to become more involved.

When is this training most useful? Who is it most useful for?

This training is useful for groups or panels of service users who are linked to a research centre, university or research network, who are involved in the early stages of research design.

Is the training accredited?

No – the variation in those delivering some of the sessions, plus the flexibility of the programme to meet local needs, means that we do not meet accreditation criteria.

Contact for more information:

Martin Lodemore, Patient and Public Liaison Officer at the Diabetes Research Network
Email: mlodemore@invo.org.uk

May 2012