Research and Community Engagement Workshop

Mon 22 April 2013

On April 4 -5, Assoc. Professor Anni Dugdale and Darlene Cox, Executive Director of Health Care Consumers’ Association of the ACT (HCCA) led a two day workshop entitled ‘Health Activism & the Knowledge Society: Engaging Consumer/Citizens in Shaping Health’. The workshop brought together over 40 people involved with health activism, including leaders of health consumer organisations, health care consumer representatives, health system leaders of consumer engagement, as well as academics and research postgraduates from sociology, public health, governance, politics and policy.

Day One of the workshop opened with a welcome from Janne Graham, who traces her activism with HCCA back to the 1970s. Dr Celia Roberts from Lancaster University, UK contributed the opening address, sharing her experience with the European Commission research project on European Patient Organisations in the Knowledge Society, which focussed on childbirth activist organisations and how they achieve their aims in part, through evidence-based activism. Professor Evelyne de Leeuw from Deakin University reflected on how far there was still to go in ‘democratizing health’, which is the title of her jointly edited collection on consumer groups in the policy process. On Day Two of the workshop, Assoc. Professor Anni Dugdale presented an early analysis of data gathered under the 2012 DVCR Collaborative Research Grant Scheme in partnership with HCCA. To bring the academic presentations on Day Two to a close, Catherine Settle, who is completing her PhD at ANU, shared her research which involves a series of deliberative democracy experiments with consumer engagement in health policy.
In addition to the academic contributions, leading practitioners from consumer health organisations reflected on current challenges, with stimulating presentations from Darlene Cox (HCCA), Melissa Fox (Health Consumers Qld), Demos Krouskos (Health Issues Centre Vic.), Stephanie Miller (Health Consumers’ Alliance SA), and Anne McKenzie (Consumer Advocate at the WA Telethon Institute for Child Health Research). Issues addressed included: how to harness the explosion of consumer to consumer communications using social media; ways of engagement that stay true to the political and emancipatory aims of the consumer health movement to challenge ‘who gets what, when and why’; changing State and Federal Government landscapes and their implications for health care consumer engagement and participation in policy making; terms of engagement and the politics of language and rhetoric in participatory policy making; innovations in mobilizing consumer power; and the increasing privatisation of health care services, and current and future threats to universal health care systems that make health care a human right.

Session chairs kept everything running smoothly, they included Janne Graham (HCCA), Laurie Grealish (UC Nursing), Russell McGowan (PHAA-ACT), Sue Andrews (HCCA), David Lovegrove (HCCA), Adele Stevens (HCCA) and John Boswell (ANU/ANZSOG Institute). There were regular breakouts into small groups to build dialogue between the sectors at the workshop. Thanks go to Robin Tennant Wood (UC Government & Policy), Suzanne Eastwood (HCCA), Heather McGowan (HCCA), Kerry Snell (HCCA), Alison Plumb (ANU/ANZSOG Institute), John Boswell, Belinda Thompson (ANU PhD candidate) and Julia Bocking (UC Hons candidate) for facilitating these smaller group discussions. The workshop closed with a PhD and research round-table, with participation from eight PhD students and several of the academics who presented at the workshop.

The workshop provided an opportunity to share reflections, interests and perspectives between practitioners and academics on the politics of the work being done by health care consumer organisations, and the power dynamics of health consumer engagement and participation in health policy. The workshop built on the research being conducted by UC in partnership with HCCA into the history and the effectiveness of the health care consumer movement in the ACT. The workshop also built a foundation for relationships, and possible spaces that could be productive for future collaborative research, between those seeking to develop a national perspective on health activism in Australia

Leaders of Health Consumer Organisations
 presented 3 panels: Making Healthcare
 Consumer/citizen/activists, Partnering with
 Government, Future Challenges.
Reporting back from one of the 3 break-out groups on Making Healthcare Consumer/citizen/activists.


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