ra 2014 opinion poll web
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RESEARCHAUSTRALIAAN ALLIANCE FOR DISCOVERIES IN HEALTH
Australia Speaks!2014 Opinion Poll – views of 1000 AustraliansVolume 12
A Message from Research Australia’s Leadership
Research Australia takes great pride in presenting Australia Speaks, the report of our public opinion poll conducted in June 2014. It provides an interesting overview of Australians’ views on health and medical research, science, preventive health initiatives, and philanthropy for such research.Research is the genius of our economy, fueling innovation and discovery. This year, with a new Federal Government and proposals to substantially increase government investment in health and medical research over the next decade, the polling is particularly significant. Since 2003, public opinion polls commissioned by Research Australia consistently show that Australians value government expenditure on health and medical research, and understand how research is linked to their health and wellbeing. Our latest polls highlight this point:
• Most Australians consider the Federal Government should be spending more money on health and medical research
• 73% say additional funding should come from either the health budget, reducing spending in non-health areas or increased taxes
• up to 86% of respondents would consent to their tissue samples being used in research
• 76% support more research into what people can do to improve their own health.
However, less than half the population donate regularly to health and medical research, and government proposals to increase investment into health and medical research may negatively impact donor intentions in the immediate term.
Over the years, Research Australia’s findings offer an intriguing look at our attitudes to research and how it impacts so many aspects of our life. With increased public expenditure a strong possibility, health and medical research will become a more focal point in the national conversation. Research Australia will continue to track Australians’ viewpoints on research and health, and we will share our findings with our members, the public and policymakers. Research is the future of our nation, and such investment bolsters our economic competitiveness, helps contain health costs and improves the health of our nation – for this generation and the next.
Prof. Christine Bennett, Chair, Research Australia and Elizabeth Foley, CEO and Managing Director, Research Australia
Table of Contents Priorities for the Federal Government .............................................................03
Biobanks’ importance to health and medical research ........................07
Preventive Health ...................................................................................................10
Communication of science and health and medical research .......11
Philanthropy for Health and Medical Research ..............................12
Opinion polling questions ......................................................................15
Major partners of Research Australia ........................................17
About Research Australia ...........................................................18
The Fine Print ............................................................................19
02
Priorities for the Federal Government
Health and Medical Research is a vitally important component of the large Federal Health Budget, receiving some $3.9 billion of the $59.5 billion invested annually by the government in health. This year, we are looking closely at the general public’s views on the Government’s announcements around funding significantly more research in the future.
Australians’ top 10 priorities for the Federal Government 2014
3 of our top 10 priorities for Federal Government spending relate to looking after our health
These top ten rank above 17 other important issues
Over the past 10 years:
• Improving hospitals and the health care system has consistently ranked number 1
• Funding health and medical research has always been in the top 10 priorities
01 Improving hospitals and the health care system 85%02 Improving employment opportunities 84%03 Doing more to keep prices and the cost of living down 81%04 Improving education standards and outcomes 81%05 Keeping the national economy strong 80%06 Creating more skilled jobs and apprenticeships 79%07 Having policies and programs for the aged and ageing, including for
pensioners and self-funded retirees 78%08 Providing strong leadership 77%09 More funding for health and medical research 76%10 Increasing funding and programs for preventive health care 75%
03
What research to fund with scarce resources?While Federal Government funding for health and medical research is substantial it only funds around 20% of the research our scientists, doctors and researchers are looking to undertake. Difficult decisions need to be made each year about what research gets funded.
People want priority to be given to research that benefits Australia
89% 87% 87% 84% 72% 60%Fund research into the diseases and issues that will most benefit Australians
Fund research into diseases that affect children
Fund research that will save money in our healthcare system
Fund research that will generate jobs and wealth in Australia
Fund research by Australia’s best health and medical researchers, regardless of which disease or health area they are working on
Fund research where little or no research is being done overseas
Fund research into areas that affect people in developing countries and attract minimal funding worldwide
50%
04
Strong support for increasing spending on health and medical researchIn the May 2014 Federal Budget, the Government announced the creation of the Medical Research Future Fund (MRFF), to be funded from future savings in the health portfolio.
17%of people thought funding for health and medical research should not be increased
56%thought the additional funding should come from reduced spending in non-health areas or increased taxes
of Australians supported additional Federal funding being directed to health and medical research
73%
More funding for research
17% 43% 13% 17% 10%
17% Redirect health savings to additional health and medical research
43% Reduce spending in non-health areas
13% Increase taxes
17% No increase to health and medical research funding
10% Don’t know/unsure
05
Will additional government investment reduce donations?Philanthropy is the third vital source of research funding alongside private sector investment and governments. It is estimated to account for between 5 and 10% of total investment in health and medical research. It supplements rather than replaces government and commercial investment, supporting research that is:
• too new, high risk or contentious, or • at too early a stage, to attract government or commercial funding • Encourages and enables young scientists to pursue a career in research.
The plan to invest substantially more money in health and medical research is likely to reduce donations to health and medical research at least initially, even though it will be several years before the Medical Research Future Fund’s annual payout grows to the projected $1 billion.
Regular donor propensity to donate – impact of government plans to fund more research
6%Can’t say
• 40% of regular donors say they are less likely to donate if government plans go ahead
• More communication is required to explain:– The MRFF will take 9 years to grow to
$20 billion– It will be some years before it starts
funding significant amounts of research– The special role philanthropy plays
regardless of MRFF funding
4%Much more likely
11%Somewhat more likely
18%Somewhat less likely
22%Much less likely
39%No change
06
Biobanks are important to researchPatients are a valuable source of research information. In particular, our tissue and blood samples collected as part of medical procedures are a valuable tool for research. These samples are stored in ‘biobanks’, where the samples are stored and can be used in future research studies. Biobanks are an important part of our national research infrastructure.
There is strong support for the tissue samples that have been collected for medical procedures to be used in research.
Consent to tissue samples being used for research63% Yes
23% Depends on type of tissue
04% No
10% Unsure
63% 23% 04% 10%
• Support for using samples increases with age, with 77% of over 55’s consenting to use samples for research compared to 61% for 35–54 year olds, and 51% for 18–34 year olds
• Younger people are more likely to say that consent depends on the nature of the sample
07
Using our tissue samples for research
Most Australians want to provide separate written consent for their tissue samples to be used in research
69% 54%
Stronger support among women than men for separate written consent
Support is strongest among those aged 55 and over
YESYES
….and most only want to give consent once for all future research uses
82% 6%
90% 76%of older Australians supported continued storage of samples
of older Australians preferred to give consent once for all future research purposes
of Australians support continued storage of samples after the initial research so that they are available for future research
Only said they did not support continued storage
56% Once
36% Each Time
09% Unsure
Preferred option is consent once
62% Yes
25% No
13% Unsure
Separate written consent
08
Linking tissue samples to personal informationTissue samples are of much greater value to researchers when they are linked to personal information such as the individual’s name, medical record and other information. And linking data enables research findings to be provided to participants.
Only 23% of respondents expressed a preference for tissue samples not to be linked to their personal information.
Linking samples to personal information
The overwhelming majority are interested in findings that are specific to them. Proportion of people interested in findings that were:
Specific information obtained from your sample that may be important to your health and treatment Your own potential
genetic risk for an inherited disease
General information regarding the results of the study overall
Any incidental findings that weren’t directly related to your diagnosed condition
57% Linked
23% Unlinked
20% No Preference
79%76%
70%81%
50% 63%Support for the linking of data is higher among men than women.
Support is also higher among those aged 55 and over (67%).
More education is neededMore people want research findings relevant to them than are prepared to have their data linked. Further education about the benefits of having tissue samples linked to identifying personal data is required.
09
Preventive Health – message getting through but more to be done Last century the world became better at controlling infectious diseases through improved sanitation, vaccines and antibiotics, and as we have made advances in surgery and medicine. Consequently, people live longer and we have seen growth in chronic diseases.
Chronic diseases are non-infectious diseases like cancer, cardiovascular disease, diabetes type 2 and dementia. Increasingly there is evidence that there are lifestyle changes we can make which reduce our risk of contracting a chronic disease. Research has shown that the lifestyle people choose is very important in managing the risk of various chronic illnesses, in conjunction with their genetic predisposition.
The old saying of ‘prevention is better than cure’ holds true, but this is still an area that requires more research.
The Keen and Curious66% want to learn more about what they can do to improve their health
More preventive health research76% agree more research required
Embracing Healthy Lifestyles 86% have made lifestyle changes in the past to improve their health
No Room For Improvement 27% believe there are no more lifestyle changes they can make to improve their health
Believe They Know How89% of Australians say they are aware of what they need to do to stay healthy
89%
86%76%
66%27%
More research into things we can do to improve our own health is important
27% Strongly agree
49% Somewhat agree
16% Somewhat disagree
05% Strongly disagree
03% Unsure
10
33% 48%
Annual donors the most interestedPeople who donate at least annually to health and medical research are significantly more interested in science (86% vs 79%) and health and medical research (94% vs 86%) than the general population.
Communication needs to improveLess than a third of people thought science or health and medical research was communicated effectively.
Men are more likely than women to think that science or health and medical research are not effectively communicated.
Are Australian’s interested in science?Science is a part of every day life but are we particularly interested in finding out about it? And how effectively are researchers communicating the impact of science and health and medical research?
• Only 28% of Australians are very interested in science or health and medical research
• Including the ‘somewhat interested’, Australians tend to be more interested in health and medical research (86%) than science (79%).
Level of interest
Health and Medical Research
28%Very interested
58%Somewhat interested
Science
51%Somewhat interested
Science not effectively communicated
The proportion of men and women interested in science
73% 85%
28%Very interested
11
Philanthropy for health and medical research
Donor activity in the past yearDonations, bequests and grants from philanthropic foundations and trusts are an important source of funding for health and medical research.
Most regular donors donate less than $100Regular donors are people who donate to health and medical research at least once a year.
Value of donations to health and medical research from people who donate at least annually
Donations to health and medical research
05%
20%
17%
23%
24%
11%
4 or more times a year 2 to 3 times a year Once a year
Less than once a year Never Can’t say
46% donate at least annually to health and medical research
72% $1 – $100
20% $101 – $500
02% $500+
06% Can’t say
12
Donation intentions
Two thirds of people who donate at least annually to health and medical research intend to donate about the same amount in the next year as they have in the last year.
Younger people expect to donate more15% of 18-34 year olds reported an intention to donate more in the next 12 months, compared to 6% of those aged 35 and over.
13%5%
8%More than this year
8%Less than this year
46%65%
About the same as this year
41%14%
Can’t say
Donation intentions
Donate to HMR at least annually
Everyone else
13
Who thinks they should donate more?
In addition to asking people about how much they intended to donate in the next 12 months we asked them how much they think they should donate.
Should you give more to health and medical research?
05% Definitely yes
39% Probably yes
43% No
13% Can't say
More ‘should’ than ‘will’
Percentage indicating ‘should’ compared to ‘intend’ to give more
Cohort Should Intend
All Respondents 44% 8%
Regular Donors 53% 13%
18 – 34 year olds 63% 15%
36%36%53% 63%Aged 35+Aged 18 – 34Everyone elseDonate to HMR at
least annually
…and younger people most likely to think they should give more
Regular donors think they should give more…
Yes, we should donate more to health and medical research
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Opinion polling questions
Australians’ top 10 priorities for the Federal Government Page 03Q: Firstly, please think about what priorities you think the Federal Government should be focusing on over the next 2–3 years. As you read through the following list of issues, please rate how important you personally think each issue is, as a priority for the Federal Government to be focusing on over the next 2–3 years. Please use a 0 to 10 scale where a 0 means that it is not important up to a 10 that means it is extremely important or a critical priority for the Federal Government to be focusing on over the next 2–3 years.
Base: All respondents n=1000 Note: not all priorities have been rated in all years
What research to fund with scarce resources? Page 04Q: Federal, State and Territory governments fund most health and medical research in Australia. How important should each of the following considerations be in determining which research gets government funding? Please state whether you believe each of the considerations is very important, somewhat important, somewhat unimportant, very unimportant or unsure.
Base: All respondents n=1000
Biobanks are important to research Pages 07 – 09Q: Suppose you had an operation or medical procedure and your doctor needed to take a sample of your tissue (including blood) for tests. Not all the tissue may be needed for tests and could be stored in a tissue bank for future research. If asked, would you allow your tissue to be used in research studies approved by ethics committees?
Base: All respondents n=1000
Q: Do you think that a person should have to provide separate written consent for their samples to be kept in a biobank, as part of the hospital admission process?
Base: All respondents n=1000
Q: Would you personally prefer to be asked for permission before each new study or to give your permission once?
Base: All respondents n=1000
Q: When the specific study which you agreed to is finished, would you allow the hospital or university to store any remaining tissue for future research approved by a research ethics committee?
Base: respondents who would allow tissue to be used for research in some or all cases n=850
Q: When tissue samples are stored for research, they can be stored as linked or unlinked.
‘LINKED’ means your sample is given a code number, which can be linked to your name, medical record and other personal information about you. However, the code is confidential and only available to research staff. Tissue samples are of much greater value to research when they are linked.
‘UNLINKED’ means your sample is not given a number, therefore it is anonymous and cannot be traced back to your name or medical record.
If you allowed your tissue sample to be used for research would you prefer your sample to be:• Linked?• Unlinked?• No preference?
Base: All respondents n=1000
Q: If you allowed your blood or tissue sample to be used for research, what type of results about the research would you prefer:• General information regarding the results of the study overall• Specific information obtained from your sample that may be important to your
health and treatment• Your own potential genetic risk for an inherited disease• Any incidental findings that weren’t directly related to your diagnosed condition
Base: All respondents n=1000
Note: respondents could answer ‘yes’, ‘no’, or ‘unsure’ to each option
15
Preventive Health – message getting through but more to be done Page 10Q: We are often told about things we can do to stay healthy, such as undertaking exercise, avoiding certain foods, giving up smoking, the warning signs of heart attack, and the link between skin cancer and too much exposure to the sun. Please consider the following statements and indicate whether you strongly agree, somewhat agree, somewhat disagree, strongly disagree or are unsure.
Base: All respondents n=1000
Are Australian’s interested in science? Page 11Q: How interested are you in science generally?
Q: In general, do you believe scientists effectively communicate the impact of their work on the nation’s health and economy?
Q: How interested are you in health and medical research?
Q: In general, do you believe that the impact of health and medical research on the nation’s health and economy is communicated effectively?
Base: All respondents n=1000
Philanthropy for health and medical research Page 12Q: Thinking specifically about funding for health and medical research in Australia, about how often do you personally donate money to health and medical research?
Base: All Respondents, n=1000
Q: And, on average, about how much money in total each year would you donate to health and medical research?
Base: Respondents who have donated at least once to HMR, n=597
Donation intentions Page 13Q: In the next year how much will you donate in total to health and medical research?
Base: all respondents, n=1000
Who thinks they should donate more? Page 14Q: Do you think you should give more money than you currently do to health and medical research?
Base: all respondents, n=1000
16
Major partners of Research Australia
FOUNDATION PARTNERS PLATINUM PARTNERS
GOLD PARTNERS
SILVER PARTNERS
17
About Research Australia
Research Australia is an alliance of 160 members and supporters advocating for health and medical research in Australia. Research Australia’s activities are funded by its members, donors and supporters from leading research organisations, academic institutions, philanthropy, community special interest groups, peak industry bodies, biotechnology and pharmaceutical companies, small businesses and corporate Australia. It reflects the views of its diverse membership and represents the interests of the broader community.
Research Australia’s mission is to make health and medical research a higher priority for the nation, and we have four goals that support this mission.
CommunityA society that is well
informed and values the benefits of health and
medical research
ProsperityEnsure Australia captures
the benefits of health and medical research
PositionPromote Australia’s global
position in health and medical research
InvestmentGreater investment
in health and medical research from all sources
To make health and medical research a higher priority for
the nation
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The Fine Print
Acknowledgements
The opinion polling was undertaken on behalf of Research Australia by Enterprise Marketing and Research Services (EMRS).
The Biobank questions were supported by the Cancer Institute NSW.
CopyrightThis work including without limitation all information text, graphs, names and logos is protected by copyright. This work may be used for your own personal use, information, research or study, or in a public forum solely for the promotion of the importance and benefits of health and medical research, so long as the work is attributed to Research Australia and used in a strictly not-for-profit capacity. Reproduction by bona fide newspapers, journals and similar publications is also permitted by Research Australia subject to attribution of Research Australia in any reproduction. Neither this work nor any part of it may be reproduced, stored, on sale, redistributed or otherwise used for profit.
Biobank items are derived and used, with permission, from research by Dr Jennifer Fleming – Fleming J. Issues with tissues: Perspective of tissue bank donors and the public towards biobanks and related genetic research. In: Stranger ME, editor. Human biotechnology and Public Trust: Trends, Perceptions and Regulation. Hobart: Centre for Law and Genetics, Uni Tas; 2007. p. 184-201] and a current NHMRC project “Ensuring the utility and sustainability of tissue banks for translational research in Australia through informed regulation and community engagement.” APP102929 CIA: I Kerridge
The report is available on the Research Australia website at www.researchaustralia.org
Research methodologyThe survey was conducted on behalf of Research Australia by Enterprise Marketing and Research Services Pty. Ltd. (EMRS). EMRS used its online research capability to collect the data. A secure link was sent to an online panel which invited Australians to participate in the online survey during the week of 23 June 2014.
1,000 Australian residents aged 18 years and over participated in the online survey. To ensure that the sample was representative of a cross-section of Australians, quotas were assigned for age, gender, and location. Where quotas were not achieved the data was weighted to the latest ABS census information 2011.
Results have been compared to previous research where relevant.
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RESEARCHAUSTRALIAAN ALLIANCE FOR DISCOVERIES IN HEALTH