Your day-to-day life in the ACT - Online survey with great prizes

jadie360 said :

dungfungus said :

They are really crap prizes for anyone over 40.

Huh? Where did you get that idea? Ageism at it’s best.

The survey is supposed to cover “a diverse range of people”.
That includes pensioners with tin-foil hats, sonny-boy.

Well, at least it is not compulsory like this one.

But, I remain sceptical for a number of reasons- the information will probably be used to curb freedom and use coercion rather than persuasion on individual health/lifestyles choices (a la Nicola Roxon/preventative health style).

I know ANU/UC are not responsible for the results beyond their scope of research, but we’ve had a pretty bad run of late with the Mike Daube’s of the world.

Wow, what a long drawn out survey, but hey, I wouldn’t mind an Ipad

Dear Jivrashia,

Thanks!

(And, yes, I do think it’s worth the risk of participating – but, of course, it’s up to you!).

Helen.

Helen_Berry said :

The study builds on 14 years of research that I have personally done in this area, the collective years of research my immediate colleagues have done, and countless years of international research.

Yet very little research has attempted to understand how the dynamics of inclusion and exclusion actually work.

You have to laugh.

Helen_Berry said :

This body of research shows that people who participate in their communities tend to have (much) better health and wellbeing than those who do not. But who gets to participate and who gets to derive its benefits is profoundly and perniciously inequitably distributed. It’s a case of those who already have the most get the most. This might sound like it’s all upside for them. But it’s not. More often than not, these same people also contribute the most, working hard for their communities. Further, it’s not just a matter of rich vs poor, black vs white, male vs female and so on. It’s much more complex than that.

Of course, no-one wants to drag down tall poppies, or make the lives of those who are doing OK a misery, but it’s reasonable to want to improve the lives of those who have least. Yet very little research has attempted to understand how the dynamics of inclusion and exclusion actually work. Without this knowledge, governments, non-profit and other organisations, scientists and private citizens don’t have the information they need to make decisions about how to make things better for those who are marginalised, ill, in pain or otherwise suffering and rejected. That’s why we’re doing this study and that’s why we’re willing to ask people to help us by sharing their information – and to take a very small risk in doing so.

It would appear you have already decided what is wrong, applied teh usual academic political correctness, and are doing a survey into how to prove that your suppositions are right. I’m glad I gave up on it in that case.

Helen_Berry said :

Hello all. I’m Professor Helen Berry (UC)

Firstly, no I am not trying to make fun of Prof. Berry or trivialising her cause.
But that was a very long post from her so I just distilled it down to the essence of what the professor did say to the best of my knowledge, without the very lengthy supporting arguments.

TL;DR
-Survey is completely anonymous, except we will take your email for prize draw. But the prize draw system is separated from the survey system.
– We follow standards for maintaining privacy (data retention policy still unanswered?).
– I have been doing research on the topic related to this survey for 14 years, and it is very complex and it could do with your help.
– The goal is to equalise distribution of health benefits for the marginalised within our society.
– Your personal information is valuable to the cause.
– Trust me, it’s worth the risk to your privacy.

Sorry, but I did pick up on the last point being mentioned SEVERAL TIMES throughout the professor’s post.

Hello all. I’m Professor Helen Berry (UC), the senior researcher on this study. Thanks for the interest in the study – it’s really great to see people debating important issues in public. The ethics that surround health research (which this study is) are complex and we could talk about them for hours. My research group sometimes does.

Just so we’re all on the same page, health research in Australia is governed by ethical requirements established by the National Health and Medical Research Council (NHMRC) and administered by universities. The requirements for getting ethical approval for a study are exceptionally demanding. If you’d like to know more, the NHMRC website has details. The present study has received ethical approval by the ANU ethics committee under the NHMRC requirements, including with respect to advertising prizes and using the survey software Qualtrics. I know that this may not meet with everyone’s approval, but we have gone through this process properly and in good faith.

I realise participating in a survey takes a leap of trust on the part of the potential participant – which is why the survey is completely anonymous, confidential, voluntary and minimally intrusive, and why there are links to further information as well as contact numbers and email addresses for any concerns or queries. It’s also why Léan and I are willing to participate in online and other debate about the study. Survey participants and RiotACTers might be anonymous but the research team and universities aren’t.

In terms of privacy and confidentiality, if you have attempted the survey, you will have seen that we do not collect any identifying information unless a participant wants to enter the prize draw. If they do, we can’t avoid requesting some form of contact information. We have chosen email because it tends to be minimally- or non-identifying and is also a reliable way to reach people. Email addresses (which people only provide if they want to) are stored separately from their survey data and destroyed once the prizes have been distributed. Again, the prize-awarding process is governed by ethical and legal requirements to which there is a link on the survey website.

Stepping aside from the detail, it’s appropriate for me to make the point that all health research has to balance risk to participants against benefits to participants and the wider community. There is no situation of zero risk, whether we conduct research or not. If we do conduct research, there is always a risk, however small, that someone could be adversely affected. (Some of you have identified one such risk, which is the potential for exposure of private information.) Yet if we don’t conduct research, we cannot make advances in medicine. I think that is a much bigger risk.

The way scientific researchers tend to think about risk is to say: (i) on balance, medical research is of such great benefit to almost everyone that it is in the best interests of society to conduct it; and, (ii) because we recognise that this research could adversely affect participants, however minimally, we must have very strict rules about how it can be conducted. Most of us make these kinds of balanced judgements every day of our lives. For example, most of us have to go out to work, care for relatives or go grocery shopping. So most of us drive cars, knowing how dangerous it is to do so. Completing an online survey has nothing like that level of risk but, as I’ve said, it inevitably does have some.

So why take that risk? Without saying too much (which has the scientific risk of influencing how participants might answer the questions – another risk that must be weighed), this study is about the ways in which Canberrans participate in (or are excluded from) important facets of society (family, work/study, community), how they experience each, and how this is related to their wellbeing. The study builds on 14 years of research that I have personally done in this area, the collective years of research my immediate colleagues have done, and countless years of international research.

This body of research shows that people who participate in their communities tend to have (much) better health and wellbeing than those who do not. But who gets to participate and who gets to derive its benefits is profoundly and perniciously inequitably distributed. It’s a case of those who already have the most get the most. This might sound like it’s all upside for them. But it’s not. More often than not, these same people also contribute the most, working hard for their communities. Further, it’s not just a matter of rich vs poor, black vs white, male vs female and so on. It’s much more complex than that.

Of course, no-one wants to drag down tall poppies, or make the lives of those who are doing OK a misery, but it’s reasonable to want to improve the lives of those who have least. Yet very little research has attempted to understand how the dynamics of inclusion and exclusion actually work. Without this knowledge, governments, non-profit and other organisations, scientists and private citizens don’t have the information they need to make decisions about how to make things better for those who are marginalised, ill, in pain or otherwise suffering and rejected. That’s why we’re doing this study and that’s why we’re willing to ask people to help us by sharing their information – and to take a very small risk in doing so.

I tried to do the survey, spent 10-15 minutes on the first section, thought I was done and found there was 4 more to go.

I got bored and left.

dungfungus said :

If the prizes were more useful, tasteful and supported Canberra businesses 100% I would participate.
Why can’t ACT Health give “healthy” prizes like vouchers for F & V (real apples) at the Fyshwick Markets? There is nothing “healthy” about Apple iPods.

LOL. True.

dungfungus said :

They are really crap prizes for anyone over 40.

Huh? Where did you get that idea? Ageism at it’s best.