Dr Jessica Browne is a Research Fellow at The Australian Centre for Behavioural Research in Diabetes, a partnership for better health between Diabetes Australia – Vic and Deakin University. Jessica, along with her colleague Adriana Ventura, is running the Diabetes Stigma Project campaign on Pozible until 10th June 2014. In today’s guest post, Jessica provides some background to the project and ways in which you can help support it.
Health and medical research is facing a global funding crisis. There is a huge amount of commentary and critique going on in Australia at the moment about the lack of research dollars available, with cuts to science funding being labelled “regressive” and “dangerous” by leading researchers. Similar discussions about the dire state health and medical research funding are being had elsewhere in the world, including in the USA and the UK.
I’ve observed that there is often an important voice lacking in these discussions – the voice of the patient. People who live with health and medical conditions are experts in the day-to-day management of the condition. They have valuable ideas and insights into what would help them manage their condition better, what the important policy and practice issues are, and what are the key areas where we should be driving for change. But where is the mechanism for these voices to be heard?
Crowd-funding democratises the research funding process
I’m privileged to work for Deakin University in Melbourne, Australia – an institution that is creating opportunities for members of the community to have their say about what research gets funded. Using the crowd-funding platform Pozible, we’re opening up our research ideas to the public (particularly those affected by the health condition being researched) and inviting them to show their support by making small donations to a research project idea that they care about. These donations will enable the research project to get off the ground, but the act of giving also serves to facilitate a sense of ownership and investment in the project, and supporters then become ambassadors, spreading the word on social media.
The Diabetes Stigma Project
Our research idea is about understanding and addressing diabetes stigma, and through our Pozible campaign page and extensive use of social media we’re seeking to capture the attention and imagination of all people who want to stand up against stigma and discrimination against people with diabetes.
We often think of stigmatisation on the basis of race, religion or gender. But have you ever considered the impact of health-related stigma for people living with health conditions, such as diabetes? Health-related stigma refers to negative social judgement based on a feature of a health condition or its management that leads to perceived or experienced discrimination, exclusion, rejection, blame, stereotyping and status loss.
As part of our previous research we have talked to lots of people with type 1 or type 2 diabetes, and they have told us that they have experienced diabetes stigma in many forms, including:
– Discrimination in the workplace
– Rejection by a romantic partner, or their partner’s family
– Being judged, blamed, and stereotyped
– Being excluded from social events
Do you think this is fair?
If the Diabetes Stigma Project is successful and we reach our target of $5,000, we will undertake a national survey of people with diabetes to explore the extent to which diabetes stigma is a problem in our society, and to examine relationships between stigmatisation and mental health, self-management, and social and occupational functioning. This information will help us develop an understanding of the impact of diabetes stigma, and what we might be able to do to reduce stigmatising practices in our society. If we raise $10,000 we can make this an international project.
What will you do to stop the stigma?
Visit www.pozible.com/diabetesstigma to make your pledge.
By donating to this project, you are pledging your support for our work that ultimately seeks to minimise the scope and impact of diabetes stigma. All amounts, large or small, make a difference.
SPREAD THE WORD
By promoting the Diabetes Stigma Project, you are not only increasing the chances that this important research gets underway, but you are also helping to raise awareness of the stigmatising attitudes and practices many people with diabetes come up against in their daily lives. This is unacceptable, and you can be part of the solution.
Search for #diabetesstigma on Twitter. You can follow me @DrJessicaBrowne or my colleague @AdrianaDVentura for regular project updates.
Like our project page on Facebook