Consumer participation a new approach to health research

April 10, 2014 by Anke Van Eekelen, Science Network WA
All Telethon Kids researchers are now required to think about what impact their studies will have on patients, their families and carers. Credit: Premier of Ontario photostream

The recent renaming of the Telethon Kids Institute has brought more change than just the name—it's bringing a new approach to health research.

While children remain at the heart, the institute has refocused on ensuring is central to its programs.

"How we do this, is how we want to be judged," said Telethon Kids Institute director Jonathan Carapetis, while detailing the new research strategy blueprint at the renaming launch.

The new approach will involve consumer participation in research through the establishment of advisory councils, steering committees, reference groups or consultancy forums by members of the community.

Anne McKenzie, consumer advocate at the Telethon Kids Institute and UWA School of Population Health, and member of the NHMRC Community and Consumer Advisory Group says holding the institute accountable to the community to address its needs takes translation of research to a new level.

"It is about making sure [health research] makes a difference to policy and practice and I believe that is what the community would want to see happen," she says.

Consumer participation is not an entirely new concept at the institute. Former director Fiona Stanley introduced community engagement in population science a decade ago and Ms McKenzie has been directly involved ever since.

"It has been a slow process. In some cases minimal, in other cases fantastic success, where researchers could see the benefit of what the community can add to the scientific process."

An example of a longstanding dialogue between researchers and the community has been in fetal alcohol spectrum disorder (FASD) studies.

"Now tools [otherwise not considered] have been developed to diagnose FASD and address the stigma attached to it," says Ms McKenzie.

Also, feedback from community conversations about service delivery for kids with disabilities let to the establishment of a disability health network by the WA Department of Health.

All Telethon Kids researchers are now required to think about what impact their studies will have on patients, their families and carers.

Ms McKenzie admits that it is not easy to bring a lab-based researcher to that same level of understanding as already prevalent among population scientists.

But she says it is possible and though each research project is unique, bringing specific stakeholders and researchers together with end users is a feasible, innovative way of doing .

Explore further: Pitt public health analysis provides guidance on hospital community benefit programs

Related Stories

Pitt public health analysis provides guidance on hospital community benefit programs

March 4, 2014
A new analysis led by the University of Pittsburgh Graduate School of Public Health offers insights for nonprofit hospitals in implementing community health improvement programs. In a special issue of the Journal of Health ...

Call for better sugary foods import data as obesity rises

July 22, 2013
Better collection of data on food sugar levels will provide ammunition for the ongoing battle against rising obesity according to researchers at The University of Western Australia.

The long reach of Alzheimer's disease

April 8, 2014
To address the burgeoning demands of Alzheimer's disease that will affect generations, new policies will have to be adopted to acknowledge the complex and unique needs of people with dementia.

Hypertension going untreated in US Hispanic community

March 13, 2014
There is a significant deficit in recognition and control of hypertension in the Hispanic population of the United States, according to a new study published in American Journal of Hypertension (AJH).

Kaiser Permanente's anti-obesity interventions in schools show signs of success

February 5, 2013
Community-based efforts to change the environment are proving to be an effective way of encouraging more physical activity and nutrition among school-age children, according to findings announced today from Kaiser Permanente. ...

We're happy to have pharmacists give us flu jabs and vaccines, but not our kids

March 26, 2014
(Medical Xpress)—Queenslanders will save time and money in a unique trial by Australian pharmacists delivering flu shots for the first time.

Recommended for you

Who uses phone apps to track sleep habits? Mostly the healthy and wealthy in US

January 16, 2018
The profile of most Americans who use popular mobile phone apps that track sleep habits is that they are relatively affluent, claim to eat well, and say they are in good health, even if some of them tend to smoke.

Improvements in mortality rates are slowed by rise in obesity in the United States

January 15, 2018
With countless medical advances and efforts to curb smoking, one might expect that life expectancy in the United States would improve. Yet according to recent studies, there's been a reduction in the rate of improvement in ...

Teens likely to crave junk food after watching TV ads

January 15, 2018
Teenagers who watch more than three hours of commercial TV a day are more likely to eat hundreds of extra junk food snacks, according to a report by Cancer Research UK.

Can muesli help against arthritis?

January 15, 2018
It is well known that healthy eating increases a general sense of wellbeing. Researchers at Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU) have now discovered that a fibre-rich diet can have a positive influence ...

Your dishwasher is not as sterile as you think

January 13, 2018
(HealthDay)—Your dishwasher may get those plates spotless, but it is also probably teeming with bacteria and fungus, a new study suggests.

Study reveals what sleep talkers have to say

January 12, 2018
A team of researchers with members from several institutions in France has conducted a study regarding sleep talking and has found that most sleep talking is not only negative in nature, but involves a large amount of swearing. ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.