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Draft Statement on Consumer Involvement in Health and Medical Research submission

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First Name: 
Last Name: 
Van Twest Smith
Q4. The draft revised Statement includes information about how the Statement should be put into practice (refer page 5). You are invited to comment on this section, including whether additional information should be added. : 

Access to up to date, relevant and timely information is critical for consumers and the community.

This includes access to health and medical journal articles containing information relating to health conditions. The outcomes of research must be explained in clear language, using layouts that increase readability. Restrictions in access limit consumer involvement.

The Statement or accompanying documentation should also emphasise the importance of providing multiple means of accessing information to suit the varying needs of consumers and community members, including that on-line can be restrictive for individuals with particular medical conditions, or undergoing particular treatments, and communication activities should be sensitive to these needs.

The documentation should also promote the use of people-first language, including when communicating research outcomes or initial research objectives (eg. person with schizophrenia, not schizophrenic).

It is often assumed that health consumers need lay summaries due to a low level of scientific literacy. Summaries using simple language are also important for consumers whose health challenges, symptoms or treatment including medication impact their levels of concentration, comprehension, energy and critical thinking skills. Lay summaries need to be developed being mindful of the health circumstances of the intended reader. A plain language summary developed on the assumption that readers have a low level of scientific literacy may not meet the needs of the intended audience, and may not be well received.

Communication of the outcomes of research often includes direct quotes from participants. Significant care should be taken to ensure that the participant is comfortable with how their quotes will be used in communications material.

Involvement in research should not be limited to those aligned with particular health advocacy services or lobby groups (eg. Cancer Council of Australia). Strong and dedicated effort should be made to reach a wide stratified audience, especially considering those who are most effected by illness or disease as least likely to connect with services due to disempowerment, disadvantage, on-going or fluctuating nature of their condition or even the current nature of their illness (ie. it is easier to join an active ‘survivor’ group compared with a ‘patient’ group interested in research).

Q5. NHMRC is considering placing Appendix 4: Useful Resources on our website so that stakeholders can access examples of consumer and community involvement in health and medical research. Please tell us about exemplars that should be included.: 

The Australian Government’s Mindframe National Media Initiative (Mindframe), managed by the Hunter Institute of Mental Health, aims to encourage responsible, accurate and sensitive representation of mental illness and suicide in the Australian mass media, and is a highly valuable resource for researchers and research institutions developing communications materials. It would be worth adding to the listing of relevant reference materials.

Page reviewed: 5 January, 2015