Review of the 2016 Statement on Consumer and Community Involvement in Health and Medical Research

Overview

The National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia Ltd (CHF) are collaborating to review the 2016 Statement on Consumer and Community Involvement in Health and Medical Research (the Statement).

The Statement aims to support consumer and community involvement across all types and levels of health and medical research. It articulates the importance and benefits of consumer and community involvement in research, and discusses a series of implementation issues.

Since its publication in 2016, a variety of material addressing implementation of consumer and community involvement in research has been developed. With the increasing availability of such material, it is proposed to remove implementation-focussed information from a revised Statement. A review of the Statement will maintain its relevance and currency, and reframe it as a high-level, overarching statement, focusing on principles, values, and roles and responsibilities of those involved.

NHMRC has developed a position paper with advice from CHF and the Consumer Statement Advisory Committee (CSAC) to guide your input on what should be included in the revised Statement. The position paper provides examples of information which could be included in the revised Statement, and poses some discussion questions. It also provides further information on the intentions and scope of the review. The position paper is available in the ‘Related’ section below.

We want to encourage you to share your views by completing the online survey linked below. The questions are similar to the discussion questions in the position paper, but have been modified where necessary so they are more suited to an online survey. If you would like to prepare your responses offline and enter them later, you may download a Word version of the questions as they appear in the survey in the 'Related' section below.

There will also be opportunities to attend online or in-person workshops which will run during March and April 2024. Attendees will be invited to discuss the questions posed in the position paper in an open forum. A link to the workshop schedule is available here: Australian Research Health Alliance (AHRA) workshops.

Why your views matter

The Statement is intended to provide guidance to everyone involved in research, including consumers, community representatives, researchers, research institutes and funders. Contributions to this survey will help inform the review of the Statement, and we value the diverse perspectives of all interested stakeholders. 

If you would like to receive updates on the review of the Statement and other opportunities for involvement, please subscribe to the Consumer Statement contact list by following this link: About the Review.

If you need any assistance completing the survey, please email us at priorities@nhmrc.gov.au.

What happens next

Stakeholder responses to the discussion questions (both from the workshops and online survey) will be used to draft the revised Statement. Responses may also be published on the NHMRC website.

NHMRC will then publish the draft revised Statement, and there will be an opportunity for you to provide feedback using this Consultation Hub.