Funded by an Australian Research Council Discovery grant, this sociological project aims to determine how Australian patients from different condition-specific communities use digital media to influence research agendas on novel treatments and their development and availability. By focusing on key areas where patients have influenced or sought to influence research agendas and the development and availability of new treatments (e.g. community awareness raising and fundraising, the creation of information sources and condition-specific databases and forums), the project will reveal the dynamics of patients’ digital media use over time.

We will address key questions such as:

  • How do patients from four major condition-specific communities use digital media to change research agendas and gain access to treatments? In particular, what role do sociocultural factors such as access to influential stakeholders, community resources and government policies and regulations play in shaping this use of digital media?
  • Based on these findings, how can digital media use and its impacts across different patient communities be characterised?
  • What policy and practical responses can be drawn from this study for the national benefit?

To address these questions, the project will employ a comparative case study approach involving the following key methods:

  1. Analysis of media produced by patient activists and reportage on activism
  2. Online surveys of patients in each of the communities who have been involved in one or more campaigns, combined with qualitative interviews with a sample of survey respondents to explore in greater depth issues raised in the survey
  3. Interviews with stakeholders in the treatment market
  4. A policy workshop to discuss the findings and their implications such as strategies for translation

The case studies are HIV/AIDS activism, breast cancer activism, blood cancer activism and activism on neurodegenerative conditions.