We promote the community ‘voice’ in health research.

Alcohol in Pregnancy Study

Researcher: Jan Payne, Research Program Manager

Consumer: Julie Whitlock, consumer representative


The Alcohol and Pregnancy Project provided educational resources for Western Australian health professionals to inform them about the prevention of prenatal alcohol exposure and Fetal Alcohol Spectrum disorder (FASD).

From the Researcher – Jan Payne

Why did you want to involve consumers and/or community members in this project?

We involved community members in this research to comply with the National Health and Medical Research Council Statement on Consumer and Community Participation in Health and Medical research, to add value to the research, to conduct good research practice that made a difference to the lives of children and families, and not as a condition of achieving funding.

Did you put anything in place before you started?

Before we commenced the research we put in place:
  • Commitment at an organisational level through the Community and Consumer Advisory Council, and support from the Consumer Advocate
  • Plans for additional use of research resources and personnel including time for researchers to plan, coordinate and manage processes involving communication, meeting procedures and provision of documentation
  • A sufficient budget for sitting fees and refreshments, note taking, venue and parking for community members

At what stages did you decide to involve consumers and/or community members and why?

At this time, we had no practical knowledge and experience with consumer and community participation in research and involved community members at the earliest opportunity following the submission of the grant proposal for funding; we learnt from this experience to involve community members as early as possible when ideas for research are being discussed.

What method did you use to involve them?

We established two consumer and community reference groups – one for Aboriginal and one for non-Aboriginal community members because of the sensitivity of the topic and different issues faced by Aboriginal and non-Aboriginal people.

Who did you involve?

We involved community members who were women of childbearing age, as some of the main outputs of the research involved health promotion for women of childbearing age.

How did you find people to involve?

We found people to involve with help and nominations from the consumer Advocate and researchers.

How did you support people to be involved?

At that time, there was no training available for consumer and community members or researchers so we established a culture of ‘learning together’. We paid sitting fees to acknowledge community members’ contribution of time and out-of-pocket expenses.

Did you evaluate the participation activities?

We developed an evaluation framework and asked community members and researchers to complete a self-administered questionnaire at the end of the research to assess the process, context, and impact of consumer and community participation.

What made the involvement work well?

The involvement worked well because of the high value placed on community and consumer participation, the respect for community members’ opinions and expertise, and getting advice from community members who were not looking at the study through a research lens.

What difference did it make to involve community members in this project?

Community members offered their perspectives on all aspects of the research, including attitudes of women of childbearing age; they contributed their perspectives on the development of documents (such as consent forms, information sheets, topic guides), health promotion materials; research dissemination activities (such as abstracts, presentations, recommendations, articles for peer reviewed journals) and proposals for future research.

  • What advice would you give to other researchers about planning consumer and community participation in research?
  • Secure institutional and leadership support
  • Involve consumers and community members as early as possible to contribute to research design and planning
  • Agree terms of reference for the level of involvement
  • Provide informational material and training for consumers and community members
  • Recognise the importance of different levels of participation, each research project will be different
  • Develop sustainable processes for involving consumers in all research and evaluate this so there is a continuous cycle of quality improvement and sharing of lessons learnt with other researchers

From the Consumer – Julie Whitlock

How did you get involved in the project?

I saw an advert. I had just had my first baby and was looking for a little more intellectual stimulation. I was already involved in some local consumer work and was looking for a little more.

What was your role?

My role was as consumer representative for the Alcohol in Pregnancy: health promotion for health professionals project.

What made the involvement work well for you?

I had been exposed to a range of different consumer groups and the way they operated. I really valued the professionalism, organisation and appreciation the Telethon Institute had for me as a consumer, individual and a mum. The organisation and clear research objectives made it very clear what my role was and how I was able to contribute. I felt my opinion was highly valued and wasn’t constrained by organisational practices or how things had previously been done. Also, the researchers on the project were thoroughly nice, passionate, egoless people who had the best interests of the project and belief in the work they were doing.

How did your involvement make a difference?

I believe my involvement has positively influenced the outcomes of this project. I was able to make a difference in the way we surveyed consumers and in the general approach of the project. But at the end of the day I believe it is up to the researchers to determine if we as consumers have added value.

Has it made a difference to you personally or to the other consumers or community members who were involved?

I’m very proud of my involvement. It has also led to being invited to participate in other related projects. I believe my association with the institute has given me professional rounding and helped me with my related consumer and professional work.

What would you advise other researchers when they are planning to involve consumer and community members in research?

Sometimes we do have opinions different to your own and as long as you hear us and acknowledge us, ultimately we need to accept this is your project and you need to lead it. Please appreciate us and value the time we contribute, as the stipend often doesn’t cover the time or effort we put in as effectively. We’re volunteers so a simple thank you is all we need.