Consumer Involvement in Research

NNIDR is dedicated to creating an environment where people with dementia, their carers and families and the wider public are actively involved across all stages and types of dementia research.

Consumer Involvement in Research Program

NNIDR established its Consumer Involvement in Research Program in July 2018. The vision, values and purpose of the Program are outlined in The Involving Consumers in Research Towards Better Care Outcomes Communique

The NNIDR is committed to the vision expressed in the NHMRC Statement on Consumer and Community Involvement in Health and Medical Research and will promote its implementation across the dementia research sector.

Being involved in research as part of the research team

What we mean when we say ‘consumer involvement in research’ is research that is carried out with or by consumers and community members rather than on, about or for them. For example:

  • working with researchers and research funders to set research priorities
  • being members of grant application review panels
  • contributing as members of project steering groups
  • commenting on and developing research materials
  • being a ‘research buddy’ or link between the researcher and the public, and
  • helping with dissemination and implementation of research findings.

Our main task to end June 2019 is to develop learning materials for consumers and researchers on how to involve consumers in research.

In late 2018, we established a Consumer Involvement Program Reference Group to help guide us in this work.

Useful links – consumer involvement in research

Consumer & Community Health Research Network (CCHRN)

The CCHRN was set up by the University of Western Australia’s School of Population Health and the Telethon Kids Institute. The website has a range of resources for health consumers and researchers to support consumer involvement in health research.

Cancer Australia Consumer Involvement Toolkit

Cancer Australia has a website dedicated to consumer involvement in research. The website has a range of tools that guide consumer involvement in cancer research.

Consumers Health Forum of Australia

The Consumers Health Forum of Australia (CHF) is the national peak body representing the interests of Australian healthcare consumers. CHF supports consumer participation in health policy and program decision making and undertakes consumer based research. CHF worked with the NHMRC to develop the NHMRC Statement on Consumer and Community Involvement in Health and Medical Research.

Involve UK

Involve was established in 1996 in the UK to support public involvement in the National Health System (NHS). The website has a range of resources that guide and support public involvement in health research.

Alzheimer’s Society UK Research Network

Alzheimer’s Society is a UK Charity that funs research and advocates for, and supports, people living with dementia. Alzheimer’s UK has established a Research Network to involve people living with dementia and carers in dementia research.

Cochrane Consumer Network

The Cochrane Consumer Network is an international network of health-care consumers who contribute to Cochrane reviews of primary research in health care and policy to inform health decision making.

Journal – Research Involvement and Engagement

Research Involvement and Engagement is an interdisciplinary health and social care journal that focuses on public involvement in research. The journal is co-produced by academics, policy makers and consumers.

Journal – Research for All

Research for All is a journal that focuses on research that involves universities and communities, services or industries working together.

Participating in clinical trials

For people who are interested in participating in clinical trials related to Alzheimer’s disease and other forms of dementia the following websites have further information:

Join the NHMRC National Institute for Dementia Research Membership Network

If you are a person living with dementia or a carer of a person living with dementia and are interested in receiving updates on how this work is going and/or becoming involved in dementia research a little down the track, we welcome you to join the NNIDR Membership Network.

To find out how to join please email us at nnidr@nnidr.gov.au or call us on 02 6217 9170. There are no membership fees to join.