Consumer involvement

This section contains the following:

Introduction
Things to consider when writing a protocol
Additional resources
Further reading

Introduction

Whilst it is important that the scientific design of any randomised trial is robust, the ultimate success of a trial depends on the recruitment and co-operation of patients i.e. the consumers of the trial. To achieve this, the trial has to be acceptable to patients as well as to clinicians. Involving consumers in designing the trial procedures can help ensure that the patients’ perspective is taken into account. Involvement of consumers ensures that the issues which are important to the patient are identified and prioritised e.g. the planned outcome matters to the patient, the wording of the information leaflet addresses patients concerns etc. To maximise the acceptability of the trial to patients, involvement at the planning phase (i.e. when writing the protocol) is desirable.

Things to consider when writing a protocol

Identify (if appropriate) which consumers will be involved in the trial design/conduct.
Outline the roles expected of the consumers and the areas of the trial where they will be particularly involved.

Additional resources

Checklist – why involve consumers in research?

This checklist has been contributed by the Consumers in NHS Research Support Unit who developed it for the Consumers in NHS Research Website.

Checklist for when to involve consumers in research

This checklist has been contributed by the Consumers in NHS Research Support Unit and the MRC Clinical Trials Unit who developed it during a seminar: Involving consumers in randomized controlled trials (see below for full report)

Checklist for identifying consumers

This checklist has been developed with help from the Consumers in NHS Research Support Unit.

Involving consumers in randomized controlled trials

This a report of a seminar organised by Consumers in NHS Research and the Medical Research Council Clinical Trials Unit and gives a summary of the presentations and discussion held on 11th December 2000, when consumers, researchers and others with an interest in the active involvement of consumers in randomised controlled trials (RCTs) came together.

Involving Consumers in Research & Development in the NHS: briefing notes for researchers

This booklet was contributed by the Consumers in NHS Research Support Unit, UK and aims to give researchers working within the NHS some guidelines on how best to involve consumers in their work. Although written primarily for researchers who receive funding through the NHS Research and Development, it will also be of use to other health researchers.

Thrombolysis for acute ischaemic stroke: consumer involvement in design of new randomised controlled trial

Liedeke Koops, Richard I Lindley. Thrombolysis for acute ischaemic stroke: consumer involvement in design of new randomised controlled trial. BMJ 2002;325:415.

Consumers in NHS research

Consumers in NHS Research aims to ensure that consumer involvement in R&D in the NHS, Public Health and Social Care improves the way that research is prioritised, commissioned, undertaken and disseminated.