By Anne McKenzie

Consumers and community members having a ‘voice’ at all levels and in all stages of health research has underpinned the Consumer and Community Participation* Program at the University of Western Australia’s School of Population Health (the School) and the Telethon Institute for Child Health Research (the Institute). The Program, which began in 1998, was first established in response to community concerns about research being undertaken using Department of Health data without community knowledge. It became a joint initiative between the School and the Institute in 2002 and follows the principles outlined in the National Health and Medical Research Council and the Consumers Health Forum of Australia’s joint ‘Statement on Consumer and Community Participation in Health and Medical Research’[1].

I commenced in the role of Consumer Advocate in 2004 and my key task is to support consumer and community involvement at both organisations by providing processes and links between researchers and the community. As a first step I developed a long-term plan to manage organisational and cultural change at both organisations. Workshops were held with staff and community members and the plan was inclusive of the goals and values of both groups. This early work has resulted in a strong, sustained Participation Program that has the following components: senior level champions, dedicated positions, policy and framework, Consumer and Community Advisory Councils, training, resources and well established links with the community.

The activities of the Participation Program have arisen from a wide variety of events, forums, workshops, presentations, training sessions and delegations. Attendees at these diverse events and activities have included researchers, students, consumers, community members and staff from government agencies and non-government organisations.

Since 2004, over 1500 consumers and community members have attended events to provide input into planning and priorities for research, strategic planning activities and seminars. The steady increase of consumers and community members in attending these events supports the increase in involvement of consumers and community members in research teams. Currently there are 149 consumer and community members actively involved in research programmes and projects across both organisations. Many of these projects use data sets that are routinely collected by a range of government agencies.

As consumer and community participation is not standard practice in research in Australia, my early support was gained from contact with the wonderful staff at INVOLVE. I have also been privileged to attend five INVOLVE conferences which, along with ongoing support from the INVOLVE staff, has allowed me to develop strong relationships and collaborations with many skilled and experienced people who are involved in patient and public involvement in the UK.

One such example of this is the collaborative work that I have undertaken with Bec Hanley following an introduction from INVOLVE. Firstly to write about the Participation Program in a resource manual for researchers: McKenzie and Hanley (2007)[2]. Then in response to requests from researchers we developed a range of training workshops on the ‘how and why’ of implementing consumer and community participation in research. Since 2007 over 900 researchers, students, health professionals, consumers and community members from across Australia have attended 19 workshops. 85% of researchers who have attended the workshops state they intend to change their practice. The steady increase in requests for support from researchers validates this feedback.

At the 2010 INVOLVE conference I met Hayley Haines (formerly from the South Central Research Design Service) prior to her travelling to Perth on a 12-month working holiday. Hayley now lives in Perth and works with me in the Participation Unit. She started with a short-term contract to work with me to develop a series of Fact Sheets[3]. A further short-term contract saw Hayley using her considerable IT skills to develop the ‘Involving People in Research’ website to house the Fact Sheet Series. The success of these two initiatives has led to Hayley being sponsored to work in Australia for a further three years.

These two introductions with Bec Hanley and Hayley Haines initiated by INVOLVE, have made a substantial and enduring contribution to the growth and development of a Consumer and Community Participation Program that is recognised across Australia as a best practice model.

My hope for the future is that as Australia moves towards greater consumer and community involvement, our Program will expand and continue to provide support for consumers, community members and researchers working together to enhance research and its results.

*Patient and public involvement in the UK is referred to as consumer and community participation in Australia.

www.involvingpeopleinresearch.org.au

Contact: Anne McKenzie, Consumer Advocate, University of Western Australia School of Population Health and the Telethon Institute for Child Health Research

Email: anne.mckenzie@uwa.edu.au