“No Jab No Pay” A questionable main course with some excellent side dishes.

Today the Australian senate passed new laws that stop parents who object to vaccination from claiming family assistance payments. The Social Services Legislation Amendment (No Jab, No Pay) Bill 2015 passed. This blog addresses some misconceptions and tries to summarise how each aspect will affect different people.

Disclaimer: I have tried to be as accurate as possible but please check anything affecting you with the relevant government websites.

“No Jab No Pay” is not a new incentive system.

There is much confusion about this policy proposal. First, it has been confused with state-based reforms. Put simply, the federal government can control access to family assistance payments through No Jab No Pay. The state and territory governments can potentially control access to childcare through No Jab No Play. Different states and territories have different requirements, with Victoria and QLD having the harshest ones and NSW having the most reasonable approach. So check your state health department website.

Second, “No Jab No Pay” has been assumed to be a new vaccination incentive system for Australia. It is not. Australia has had ‘no jab no pay’ requirements since 1999. See this article for an overview. Any child born between 1999 and today had to be age-appropriately vaccinated for their parents to receive family assistance payments. If they were not, their parents had to lodge an exemption – either a medical or ‘conscientious objection’. A doctor or immunisation provider had to sign the form saying:

“I have explained the benefits and risks associated with immunisation to the parent or guardian of the child named, and have informed him/her of the potential dangers if a child is not immunised.”

If parents did not meet these immunisation or exemption requirements, they would miss out on receiving the payments. The payments linked to vaccinations have been:

  • Family Tax Benefit Part A supplement when they turned 1, 2 and 5 years (income tested).
  • Childcare Benefit (income tested)
  • Childcare Rebate (not income tested)

See here for more information.

What will change?

The proposed ‘No Jab No Pay’ Amendment Bill does three things:

  1. Removes the conscientious objection exemption so those families can’t get the payments at all;
  2. Extends the ‘fully vaccinated’ requirement to age 19. (This is for the vaccines that are due by age 5 years — it doesn’t pertain to HPV vaccine which is first given at 12 or 13 years);
  3. Applies the requirement each income year from age 1 to 19 years, not just at 1, 2 and 5 years.

Will it work?

The bill in its entirety will hopefully improve vaccination rates, probably because of the added extras. When the policy was announced by Scott Morrison on 12 April, I wrote this blog expressing concerns that it would not make a meaningful difference to vaccination rates. In the form that was announced at the time, it would not. But government has since announced additional changes that will have more of an impact.

A decline in objector rates happening now has been assumed to be a result of people already re-thinking their decision. Maybe but we don’t know if they have actually vaccinated. They may have simply stopped their objection registration. Vaccinations rates are what we should look at and even then, commentators should be careful not to fall into the ecological fallacy trap and attribute a changes in rates to any one thing.


Main course: Removing conscientious objection exemption


Could increase vaccination rates by 0.6% if all affected objectors are fully vaccinated. However, not all will change and some will dig in.

Saves an estimated $200 million from people not getting family payments because they will still refuse vaccination. This pays for the good measures.

All the media attention could act like a giant advertisement for the existing requirements.


This group is now 1.52% of all children. Still doesn’t deal with the 7% who don’t lodge objection and don’t get fully vaccinated.

Doesn’t really touch the wealthy objectors.

Families could miss out on up to $14,000 per year per child.

Creates financial hardship for very low income families among the objectors.

Will make childcare unaffordable for some families who continue to refuse vaccination.

Undermines the consent process and reduces trust in the system.

GPs and nurses will be at the frontline of conflict.

Removes incentive to get a form signed by a health professional meaning less engagement with health care system.

No more monitoring rates of vaccine objection. It disappears as an entity.

Removes system that some state governments used to enable access to childcare for vaccine objectors.


An ethically questionable approach to the problem. A better option would be to require yearly registration of objection until child turned 5. However, this part of the bill will fund some more effective reforms.

Still no system to compensate for rare and serious vaccine injury.

Will need to find other ways to measure vaccine objection.*

Side dish: Yearly requirement to be up-to-date with vaccinations.


Each year, parents will be reminded to get their children up to date with the vaccinations. Before, it was only when child turned 1,2 and 5 years of age.

Health Department is funding catch-up vaccines for a time for the over-7’s. They were previously not free.


Could affect lower income families much more.


A yearly vaccination nudge will get parents to be a bit more timely with vaccinations.

Side dish: Expanding requirements to age 19


Ongoing yearly reminders for parents to get their kids up to date for the primary series given before age 5.

Necessitates the expansion of the immunisation register to 19 years in the first instance.


Expands the application of the penalty for the disadvantaged who are struggling to access the services.

Creates a bit of a nightmare if the register isn’t recording vaccinations well.


More children will get up to date and the gains will be sufficient to outweigh the negatives in my view.


On April 12, Minister for Social Services Scott Morrison announced No Jab No Pay – the stick – on April 11. Then on April 19 and later in the May budget, Minister for Health, Susan Ley announced some other reforms – the carrots.

Health Department side dish #1: Expanding the register from 0-7 to age 19 then to all ages by end of 2016


Enables health professionals and all Australians to know if they are due for a vaccine. No more digging around for lost vaccination cards…


Hard to think of any negatives.


That’s Gold!

Health Department side dish #2 Catch-up payments for doctors $6 for an overdue vaccine.


Encourages health professionals to be looking out for opportunities to remind late parents. Some compensation for health professionals for the extra time to address often complex catch up arrangements.


Addresses children who are late instead of targeting them before they become late.


Worthwhile. A pre-vaccination reminder system would be nice too. Pre-call is better than recall.

Health Department side dish #3 Education and communication


Informs parents about all the changes.

Addresses a national gap of consumer information and education.

Addresses the vaccine hesitancy problem.

Increases support for health professionals dealing with vaccine hesitancy and refusal*


Education and communication are essential but only increase vaccination rates if combined with other interventions.

Education can sometimes make things worse if done poorly.


Fills a national gap. The communications should be based on understanding the different target groups, be evidence informed, and truly engage with people’s questions and concerns.

What about the ethics of No Jab No Pay?

In terms of removing capacity to claim objection and get family payments, many welcome this new ‘get tough on anti-vaxers’ approach. Others like me argue that many of the objectors will be unmoved. It will make their children pay twice and there are more ethical and effective ways to raise vaccination rates. Experts in Australia, the USA and UK have also raised their concerns about these kinds of measures. The Royal Australasian College of Physicians; The Public Health Association of Australia; the Australian Medical Association all raised concerns about aspects of the bill in senate submissions.

On the other hand, there are some knowledgeable and thoughtful people who mount arguments for removing objection provision from the current requirements.

I do not support the aspect of the bill that removes the capacity for vaccine refusers to obtain family assistance payments. However, other parts of the bill are positive additions that will probably improve vaccination rates. And here’s where it gets more complicated: the estimated $503 million over 5 years, save by the reforms not working on a bunch of parents, appears to be funding a whole of life register, a catch up payment for doctors who get late kids caught-up and some communication initiatives*. In particular, the register expansion and the catch up payment will certainly improve coverage because it targets the largest group of under-vaccinated: the 7% who don’t meet vaccination requirements and don’t lodge an exemption.

Whether government can justify such a severe policy depends on how much can be gained; the degree of harm; and what is in place to mitigate those harms. Right now, Australia has no compensation system for the very rare occasions where children are injured by vaccines. Fortunately, the senate recommended that it be investigated following our urgings. We must keep this on the agenda.

Regulation in public health has saved many lives. Seat belts, drink driving laws and indoor smoking are the stand-out examples. And while the alcohol and fast food industries could be better regulated, prohibition of alcohol was a failure. Shutting out the children of vaccine objectors from childcare through making it unaffordable (feds) or inaccessible (states) potentially creates a market for lower quality childcare arrangements for families who can no longer afford quality accredited ones. Such plans have already emerged in news reports.

Somebody has argued that if we can ban peanut butter sandwiches in schools, we can ban the unvaccinated. But children are not peanut butter sandwiches. They are children with a right to education and family support payments like any other eligible child. There are already rules in some states to exclude the unvaccinated during an outbreak. People are rightly concerned about risk of harm to others. But to be fair, the responsibility should be spread beyond the children of the unvaccinated: to ensure antenatal clinics offer pertussis and flu vaccines to pregnant women, to ask why only 36% of younger groups at risk of severe influenza are vaccinated for flu; and vaccination of childcare workers should be under the spotlight.

With vaccination, regulation works: linking to family payments since 1999 and other measures has taken national coverage from 53% to 92%. But we have a persistent 8% gap that is bigger in some regions. The children making up that gap need other measures. Some of the reforms around No Jab No Pay will help but more is needed.


*Conflict of interest: I am leading a program of research funded by the Department of Health through NCIRS that involves developing a communication support package for primary care providers. I have sought funds for research on measuring vaccine acceptance and conducting research in communities.

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Improving communication about vaccination – “SARAH”

Vaccines prevent many millions of deaths and illnesses globally. While most parents accept vaccination, some have questions or concerns – they sometimes struggle with the vaccination decision, trying to negotiate often highly polarised and conflicting information.

My research aims to support the uptake of recommended vaccines in ways that are respectful and supportive of parents. I want to help parents to make quality decisions for their children. Currently I work with others on finding ways to improve communication about vaccination with individuals and communities that are both effective and ethically sustainable. I see communication as not just about what we say, but also how we say it and how we listen. Action and inaction are also a powerful forms of communication, whether they be by individuals, organisations or governments.

This is the first in a series of blogposts about the research I do with others in this area. In this post, I describe SARAH – “Strategies and Resources to Assist Hesitant parents with vaccination”.

Screenshot 2015-05-15 10.26.56

There is growing concern about “vaccination hesitancy”. It is not clear whether vaccination hesitancy is increasing globally but there are signs. What is “vaccination hesitancy”? Put simply, it as a psychological state where parents are unsure about whether or not to vaccinate their child. Some hesitant parents will fully vaccinate. Others will leave-out or delay certain vaccines. Hesitant parents are different from declining parents who never did or no longer vaccinate at all. Declining parents have often made their decision and are less likely to change (picture below based on a study by Benin and adapted by us here).

The Vaccine Acceptance Spectrum

The Vaccine Acceptance Spectrum. Many parents move from one position to another.

One of the ways to support vaccine-hesitant parents is through their discussions with health professionals. So we have developed the SARAH system. It provides tools and resources for doctors and nurses to discuss issues of concern about vaccination with parents and carers. It is designed to make vaccination decisions more informed and more satisfying for parents and health professionals. It helps health professionals allocate time with the parents who need it most – those who hesitate. It aims to move parents towards vaccinating; increase parental satisfaction and build trust in health professionals.

The picture below provides a highly simplified representation of this system and was developed by Hal Willaby. SARAH is designed like a ‘triage and treat’ system with three distinct pathways. First, it assists health professionals to identify whether parents are vaccination-accepting, hesitant or declining. Then it guides them to adapt flexible goals and appropriate strategies, including the provision of tailored information. We intend to develop a digital package to integrate into primary care. It will consist of information resources for parents; clinician discussion guides; referral system, and online training module.

A very basic representation of the SARAH system for health professionals and parents

A very basic representation of the SARAH system for health professionals and parents

This is a large program of research in three phases: (1) developing and testing resources; (2) assessing feasibility of integrating it into primary care; and (3) evaluating its effectiveness. We are attempting to capture best practice in health communication and using extensive research on what parents want to support their decision making about vaccination and what health professionals see they need to support them.

SARAH is the product of a team working together to share their knowledge and ideas. They include Nina Berry, Lyndal Trevena and Hal Willaby, University of Sydney; Margie Danchin, Murdoch Children’s Research Institute; Tom Snelling, Telethon Kids Institute; Paul Kinnersley, Cardiff University; and Francine Cheater, University of East Anglia. Each person brings expertise in health communication, primary care, adult education, implementation science, vaccinology and paediatrics. We are also consulting with other parents and health professionals. We based SARAH on a framework published here – a collaboration with Paul and Francine (above) and also Cath Jackson from University of York, Helen Beford, University College London and Greg Rowles who is a GP from Melbourne.

We are in very early phases of development of this exciting and ambitious project, hoping to transform it from idea into reality.

As supporters of vaccination, we want to see children protected with safe and effective vaccines. As parents we understand the challenges of raising children. We hope that SARAH can contribute to finding effective ways to help parents to make quality decisions for their children.

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Will stopping vaccine objectors from accessing payments have its desired impact?

(This blogpost has been updated from 11 April because government announced on 12 April that it would also remove  eligibility for Child Care Benefit and Rebate along with Family Tax Benefit Part A Supplement)

The Australian government announced on 12 April 2015 that it will “end the conscientious objector exemption on children’s vaccination for access to taxpayer funded Child Care Benefits, the Child Care Rebate and the Family Tax Benefit Part A end of year supplement from 1 January 2016. They called the move “No jab – no play and no pay for childcare”.

The Family Tax Benefit Part A supplement represents up to $2178 per child. It is means tested and 73% of families are estimated to be eligible. The Child Care Benefit is worth $200-a-week and the Child Care Rebate worth $7500-a-year,  reported one newspaper.

Many have welcomed this decision. They are rightly motivated to see immunisation rates improve. On an emotional level it has appeal because it appeases anger about parents who reject vaccines. However, there are some downsides to this policy that are much less obvious, but need to be considered.

In summary, it is unlikely to make a meaningful difference to improving vacation rates. It amounts to a form of mandatory vaccination for lower income families, but without a no-fault vaccine injury compensation system implemented alongside. Some children from lower income families will no longer be able to attend childcare. It almost certainly won’t shift entrenched vaccine rejectors. As a monetary sanction it comes with insufficient evidence of its impact on vaccination rates, whereas Australia’s current system of incentives comes with strong evidence for their impact on vaccination rates.

The system we have now works well – maximising procedural complexity for non-vaccinators while encouraging late parents to be up to date. It is fair and proportional to the contribution that vaccine rejectors make to under-vaccination which is at 2%.  A report stated that 14,000 families of the 39,000 registering objection to vaccination would be affected. Assuming the 39,00 is the 1.77% who register objection, this equates to 0.6% of children. In a best case scenario where the policy convinced half of them to vaccinate, it would increase child immunisation coverage overall by 0.3%.

Quality engagement with a health professional is a much more ethical and satisfactory approach to non-vaccinators than monetary sanctions. To increase vaccination rates there are areas where much greater gains could be made with fewer unintended negative consequences.

Here is a Q and A about the proposal to help readers consider the impact.

“There are disease outbreaks and people get sick and die. How can we stop people shunning vaccines?” Australia definitely could improve its vaccination rates, its disease control and even the effectiveness of some of its vaccines. But removing family assistance payments for vaccine rejectors will make very little impact on this problem. It won’t touch the 1% who have no vaccines at all – entrenched objectors are very hard to shift. It might motivate some in that 1% of registered objectors who have at least one vaccine, indicating they are not totally averse to vaccination. But these selective vaccinators tend to be in a higher income bracket, and many will be untouched by the policy. The remaining 5% who are not fully vaccinated fall into the motivated but disadvantaged category. Most of them have vaccines but they tend to be late or miss some. Already, these parents have the requirement to be fully vaccinated to get payments. And since they are still not vaccinated, clearly other things need to be done for them (see later). Some children are recorded as being partially vaccinated but are actually fully vaccinated. This is a common recording error. The Australian Childhood Immunisation Register (ACIR) once sent me a letter saying I needed to get my daughter up to date. She was up to date, but the data had not transferred from my GP to the register. Primary care providers spend far too much time correcting ACIR data transfer glitches.

“When did Australia start linking payments to vaccination?” In 1998 the federal government started linking existing parent payments to vaccination status. Then they included the Maternity Allowance ($200 per fully vaccinated child) and the Childcare Rebate ($20-$122/week). Children had to be fully vaccinated for age for parents to receive the payment or parents had to prove a medical or ‘conscientious objection’. In July 2012, government removed the Maternity Allowance altogether and began linking vaccination to eligibility for Family Tax Benefit Part A supplement. This was linked to completed age appropriate vaccination at 1, 2, and 5 years of age for the child and paid in three instalments. Children either had to be fully vaccinated within a certain window or to have registered an exemption – medical or ‘conscientious’. It was worth up to $726 per child per age milestone.

“Isn’t it easy for parents to register ‘conscientious objection’?” The registration process is inconvenient enough to sort the prevaricating from the committed. Parents must take this form to their doctor or immunisation nurse and both must sign it to say they have discussed the risks and benefits associated with immunisation. In one of our surveys, 18% of GPs said they would never sign the form. So some parents must then ‘shop around’ to find somebody who will. They then must submit the form to the Department of Human Services.

“Is it fair that vaccinating parents have to front-up at three visits to get their payments while objectors only once?” It would be fairer to have vaccine objectors have to submit a form at the 1, 2 and 5 year old milestones, not just once. Vaccine objectors should be asked to carefully consider then reconsider their decision, for it affects not just themselves but the wider community.

“How much money is saved by removing FTB-A from objectors?” Reports have estimated this to be about $50 million per year. Ideally the money saved would go into innovative programs to prevent vaccine refusal and respond to parental hesitancy and to improve access to timely vaccination for the disadvantaged.

“Should parents who fail to abide by the social contract not get benefits?” The payments were not introduced as a vaccination incentive originally. They were introduced with the express purpose of supporting Australian families and were later linked to vaccination. Child care payments support the participation of women in the workforce. No other health behaviours are linked to welfare payments. The vaccine incentives system we have now works well – maximising procedural complexity for non-vaccinators while encouraging all parents to be up to date. It is fair and reasonable.

“Would mandatory vaccination help in some respects?” This has prima facie appeal, but what do we mean by mandatory and what would happen if a child were not vaccinated? No country legislates the forcing of vaccination onto a child, unless there is an immediate danger to them. For example, hepatitis B vaccination was required for an infant born to a vaccine-refusing mother who was surface antigen positive. Media occasionally report rare instances of jail for vaccine refusing parents in some countries. The US has school entry vaccination requirements with exemptions. Until now, Australia had vaccination requirements to access welfare payments, with exemptions available for vaccine rejectors and those with a medical contra-indication. Our exemption system amounts to what US experts have advocated for some time because it has sufficient procedural complexity, but stops short of full removal of rights. While a recent Galaxy poll commissioned by Newscorp indicated 86% support for compulsory vaccination, it is unclear how large and representative the sample was and what respondents had in mind for “compulsory”. If it means removing FTB-A supplement, as is planned, then government will effectively introduce a mandatory vaccination system for lower income families without any robust consultation and the public will not have the opportunity to consider the full range of issues.

What would need to be considered if we did have a form of mandatory vaccination? Vaccination is different to other public health measures where mandates have been successfully imposed. Vaccination is a more invasive intervention that comes with common and minor, and rare serious side effects. Because of these risks, governments that mandate vaccination are obliged to bring in a no fault vaccine injury compensation system. However, there are no indications this will occur.

“How do heath professionals feel about having to sign these objector forms?” Clinicians can feel quite ambivalent about signing the forms. My team just completed 26 in-depth interviews with immunisation providers on this topic and I have run workshops with hundreds of GPs and nurses. Many clinicians find these consultations challenging. They feel torn between wanting to see children vaccinated and wanting to retain a relationship with the parent/s. While some dislike having to sign the forms, most will do so, seeing it as an opportunity to discuss vaccination and keep the door open for the future. Sometimes these discussions lead to the child being partially vaccinated. At other times, parents come back when they are about to travel overseas or the child is older. Quality engagement with a health professional is a much more ethical and satisfactory approach to non-vaccinators than monetary sanctions. Removing the incentive for those families to discuss their decision removes an important opportunity.

“Aren’t vaccine objectors at ‘record levels’?” This is simply wrong. A readily accessible website indicates that objector levels actually dropped from 1.79% in September 2014 to 1.77% in December. Between 1999 and December 2014 there was a slight absolute increase in registered objector levels from 0.23% to 1.77%. Unpublished data suggest that this is likely a shift from those who previously did not register refusal now doing so as they became more aware of their capacity to claim or being more motivated to claim objector status. See this blog. Australia will also stop being able to monitor objector levels if the government ceases to measure them. Should this occur, the states will need to implement their own registration system for their existing childcare and school entry requirements.

“What is happening to vaccination rates?” They are holding steady at around 92% and have done so for years. The false reporting of our childhood immunisation rates as being on the decline is harmful if it influences parents to believe that this is a trend. Regardless, the gap between ideal and actual vaccination rates has persisted and needs to be addressed.

“Vaccine objectors cluster in regions. What can we do about this?” This clustering is a persistent problem, creating a critical mass for outbreaks to be more likely and sustained. Non-vaccination travels with other social norms and group identities. Public health needs to better understand and engage with these communities. Punitive policies will almost certainly make that job more difficult, as they further alienate such communities from the government and medical system.

“If this policy won’t do much for vaccination rates, what will?” The following actions would bring bigger marginal returns than penalties:

• enhanced support for doctors, nurses and Aboriginal Community Controlled Health Services providing vaccines

• implement quality control measures in the ACIR to identify and detect recording errors

• having a national vaccine reminder system

• home visiting programs for homebound families

• funding for migrant and refugee catch up programs

• enhancing the cultural respect of immunisation services.

We could also do with a focus on adult vaccination rates, which can be very low. A whole of life register would enable providers to know if the person sitting in front of them is due for a vaccine and adults to keep track of their own vaccinations.

“But these practical measures don’t solve vaccine refusal.” They probably do more for vaccination rates, but it is true that they don’t target refusal. This has been challenging ever since Edward Jenner developed the smallpox vaccine in the nineteenth Century. The solutions need to focus on touchpoints where views about vaccination are shaped: in high school, antenatal care, primary care, and in communities who influence each other. We also need to shore up our readiness for a vaccine safety scare that could be just around the corner. You can hear more about this challenging area in my recent presentation.

In conclusion, the proposal to stop vaccine objectors from getting family assistance payments seems inevitable. However, I feel it’s important that people are aware of its intentions and consequences, and of the less obvious impacts. Also, vaccination advocates can take the opportunity to also propose solutions that are likely to have a bigger impact on improving vaccination rates.


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The highs and lows of qualitative research

I sat in her lounge room on a cold Auckland day in 2007. During our in-depth interview this mother cradled her sick baby while the other three played in a nearby room. They lived in a small two bedroom flat and their son was ill and needed weekly visits to the hospital. Having no car, this journey took them one hour each way by public transport with, three children under seven. No longer was this a bunch of variables in a survey, it was a person’s life and how all these things worked together to make on-time immunisation very difficult.

The interview was part of a qualitative study that seemed elegantly simply. We would recruit 20 parents in three cities who faced economic hardship or social exclusion and whose children were not fully immunised. Then we would find out why.

It had started with a 2006 conversation with a public health practitioner. We both agreed this research was needed. Already, there had sprung up an entire industry of research off the back of the MMR vaccine scare delving into vaccine refusal. But there were another group not immunising on time or at all who were largely ignored. They were poorer, larger and/or single parent families and I suspect many in public health just assumed they knew what was going on. Very few studies had actually asked the families. We wanted to get their story, and their suggestions for what would make timely immunisation easier. We might confirm, unsettle or completely usurp our assumptions about these families. Indeed, part of the fun of qualitative research is being surprised.

The research journey is like a mountain hike at first requiring a trudge through the property of others before embarking on the peaks. There are many gates, many gate-keepers and many paddocks with landowners who require your trust: funding bodies, ethics committees, recruitment sites, journal reviewers and territorial disciplines.

This qualitative project had many gates. First there were the stringent privacy laws making recruitment via the Australian Childhood Immunisation Register impossible; there was an ethics committee who had issues with “statistical analysis” of this qualitative project; there was tiny budget; and the families themselves who were not seen in the typical recruitment settings. We overcame some of these recruitment issues with our first recruitment site, a public health unit, but then swine flu hit and they were swamped. Plan B was to recruit from a population health survey which had capacity to contact these parents. That gate was shut. Plan C involved recruiting through local community playgroups and required a new set of collaborators, a new ethics application and a new set of hurdles.

We ended up interviewing about 45 women in three cities: Sydney, Auckland and Leeds. The women we interviewed were generous with their time, their stories and ideas on how the problem would be solved for them. They became the experts. The mum in Auckland suggested an immunisation service at the hospital, removing the requirement for yet another health appointment on top of an already overcrowded schedule. Other mums living in very difficult circumstances had similarly helpful suggestions.

What was clear was that these mothers supported immunisation and wanted to protect their children. The apathy tag heaped upon them was unfair. In many cases, they faced their own gates and fences which seriously impeded a path they were keen to take. They intended to get their children fully vaccinated but domestic violence, mental illness, housing instability, transport difficulties, and bad experiences with health care services all acted as barriers.

Two days after learning of the failure of recruitment Plan B, I received an email. It was from a from a senior government officer about a large in-depth interview study we did on implementation of their policy. It was written to our small research team.

“The report is great. I must admit to some surprise at how informative and useful the research method has been. I thought we might get some grizzling from the “troops”, but nothing terribly useful. Instead, the report has managed to draw out the concerns of those at the front line and other levels, make sense of them, contextualise them within the whole effort, and make useful recommendations. Fantastic.”*

This is one of the joys of qualitative research – getting to show people unfamiliar with this method just what it can deliver. Far from a series of anecdotes, qualitative research has the capacity to systematically and rigorously provide insights that no other research method can. It helps us ask the “why” questions and can offer a rich understanding of just what is going on:

Why are only one third of pregnant women having a flu vaccine?

What influences people’s perception of cancer risk?

Why do certain groups of women not have pap tests?

What is it like to live with a child with chronic kidney disease?

Qualitative research takes us beyond the t tests and the logistic regression. There is no doubt these quantitative methods play an essential role and it was the surveys that led us to questions about disadvantaged families and immunisation. But qualitative research also gives context and humanity to our research. It would take a lot of locked gates to stop me on this hard but rewarding journey.

*Reported with permission.

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Why the rise in vaccine objectors?

Vaccine objector rates are rising in Australia. In 1999 they were 0.23% and by September 2014 they were 1.79%. This is nearly an eightfold increase in relative terms and a 1.56% increase in absolute terms. Vaccine objector rates are based on those who formally register their objection using this form. The form must be signed by an immunisation provider or doctor and the parent and submitted to the Department of Human Services. It is required by parents who are not fully vaccinating their child (i.e., not vaccinating at all or partially vaccinating or delaying vaccination) to continue to receive certain government payments, childcare rebate (if they are eligible) and entry to childcare in some states.

Vaccine objector rates have risen - slightly (note the y-axis only goes to 5%)

Vaccine objector rates have risen – slightly (note the y-axis only goes to 5%)

There has been a lot of concern expressed in the mass media about this rise in vaccine objectors. The spotlight burnt brightly once vaccination rates first became really public in April 2013 when the National Health Performance Authority released regional level data. People were naturally worried about what this might represent. Societies can usually withstand a small handful of vaccine objectors but it doesn’t take much of an increase to tip us over into outbreaks. The most stark example was when the UK’s MMR scare led parents who would usually fully vaccinate, to delay or decline MMR vaccine, leaving them with a measles epidemic.

Is this rise in objector rates because diseases like polio and diphtheria are going from memory, ironically with the success of vaccines? Has the internet’s capacity to rapidly deliver misinformation to parents created a rising tide of fear and misapprehension? Or are we seeing a shift in parenting styles – the ‘professionalized mother’ who spends time and resources deciding what her child needs but in that process sees vaccines as just a technology for individual consumption, as this study found?

The problem is that we don’t really know why vaccine objector rates have risen. There has been no corresponding decline in coverage rates. Then there is this mysterious group of children who are not registered as objectors but have no vaccines recorded on the Australian Childhood Immunisation Register. They were estimated to be 3% of children in 2013.

Nationally, the proportion of children with no vaccines recorded has reduced to 2.31% at the same time there was a slight uptick in registered objectors. This suggests that at least some of the parents who were ‘silent’ (non registering) objectors have shown their hand. A recent study of this group in WA helps shed light on who they are. It found that 28% were unregistered vaccine objectors. Also, in 44% the family had moved from overseas and the child’s previous immunisation history had not been added to the Australian Childhood Immunisation Register. An important caveat with this study, is that the researchers were only able to speak to 29% of the 834 they aimed for. However, the overall picture is that ‘no vaccines recorded’ is a mix of children who are truly not vaccinated at all and about half who are partially vaccinated but they don’t make it to the register.

The recent reduction in ‘no vaccines recorded’ and a corresponding increase in registered vaccine objection makes sense. In July 2012, the federal government linked Family Tax Benefit part A to completed vaccination of children (described in more detail here). This payment is up to $2100 per child paid to the approximately 73% of families who were eligible. It used to be linked to the Maternity Immunisation Allowance which was much smaller. So by linking this larger payment more parents would be motivated to register an existing objection – they now had more to lose by continuing to not vaccinate. We have also seen a tightening up on childcare entry requirements in NSW meaning that full vaccination or registered objection is being more strictly enforced before children can enrol.

At what point will vaccination objector rates hit a ceiling? They were was 1.79% in September 2014. Will they rise to 2.5% or 3%? Because our immunisation rates remain stable, the objection rate is unlikely to rise much above 3% unless Australia gets a vaccine safety scare.

It is not certain whether the rise in official vaccine objectors is only about people who were always objectors now registering. The best way to tell would be to track attitudes over time and include a more direct question. But this is not happening at present. I am working with researchers who have the expertise to develop and deploy a good quality survey but this needs funding like any other quality research endeavour. It is an important investment. The UK reaped the benefits of such a survey at the height of the MMR vaccine scare when they were able to track mother’s attitudes to MMR vaccine and predict accurately ahead of time when coverage would decline. Meanwhile, we will have to keep guessing what is happening to vaccine sentiment in Australia.

As we point out in this recent article, vaccine hesitancy is a growing concern. Countries all over the world see groups of parents who partially vaccinate or do not vaccinate their children at all out of choice. Much more needs to be done to see if hesitancy is growing, what drives it, and what governments can do about it. Vaccine refusal is the tip of the ice-berg. Many parents fully vaccinate but are still quite hesitant. What might tip them over?

A vaccine would never be unleashed on a population without data on the disease itself using good diagnostic tests and surveillance. Then the vaccine must be tested to ensure it is effective and safe. The same goes for vaccine hesitancy. It is not enough to assume hesitancy is rising. It needs to be measured with decent indicators and over time in populations of parents. Governments also need solutions that are well tested so they are effective and don’t cause unintended harms. This can only happen with a strong evidence base. We demand it for vaccines. We should also demand it for the solutions to vaccine hesitancy.

COI: I am involved in a number of research funding applications to develop ways to assess and address vaccine hesitancy.

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A tribute to my father

Screenshot 2014-03-06 22.27.25

A year ago today, I was sitting at my desk preparing for a huge Thursday and Friday when I got a text message from my stepmother Rose, “Dad in hosp emergency fell on carpet 4am bad headache being checked. Will keep you informed. X r” I slumped physically. This could only mean a bleed on the brain. For Dad, that was incredibly serious. He had chronic myeloid leukaemia (CML) and he bled very easily.

Clotting is something we take for granted. In Dad, it did not work at all well. A simple scratch would take an uncomfortably long time to stop bleeding. Cleaning his teeth could set off gum bleeding. A bleeding nose was worrying. His body leaked in this sinister way and it was unsettling. For dental work, Dad would need a platelet transfusion the day before. Surgery was out of the question and meant he had to endure painful arthritic knees that were long overdue for replacement. His leukaemia led to chronic tiredness, which made Dad even quieter than he usually was.

Dad had been on expensive treatment that took weeks to obtain. It was not an overnight cure for his atypical form of CML but it had made some difference. In that month he had been able to walk around Dove Lake in Tasmania and survive a fall that gave him a big graze. He had renewed energy and the night before his bedroom fall, had had a lovely night out with friends, almost back to his jovial self.

But sometimes death comes from the most simple of activities. And it did for Dad. A faint in the bedroom set off a catastrophic bleed to his brain that no intervention could stop. His subdural haematoma was bilateral and they made the considered decision to not operate due to his bleeding risk, hoping it would abate. By 6pm when I arrived he was in the emergency department awaiting transfer to neurosurgical intensive care. But in retrospect, I see that at that time his level of consciousness was on a rapid downhill slide.

I see that evening as a series of events: He shields his eyes from the light and dry reaches, I look for a buzzer to call somebody but can’t find it, a nurse finally arrives to give Dad morphine for the headache, Dad crashes, “Dad, wake up, wake up Dad”. The Narcan fails. “He’ll need to go to resus” says the doctor urgently. They unlock the bed wheels but the decoupling of monitors and releasing of bed breaks is stalled and chaotic.

There is an undignified rush to the resuscitation bay where staff to patient ratios have increased eightfold, we are ushered into a waiting room, the head of ED arrives and screws up his face as he tells us of Dad’s fixed pupils. I fall apart. A kind volunteer offers me and Rose a cup of tea. The neurosurgical registrar seeks our urgent consent to operate, we mention his living will and desire for quality of life, the registrar gives us a fixed stare. I feel abandoned to this decision and wish he had been taught about shared decision making. Now intubated, we kiss him goodbye.

Leaving, we notice another patient in the cubicle next to Dad’s. Lying flat on his back, his face is the colour of marble and he looks terrible but  no staff are attending him. Quickly we realise it’s a mannequin. Dad would’ve laughed uproariously.

Hours later, Dad returns from surgery where they tried to address the haemorrhage. His head is shaved and sutured like something out of a science fiction movie. We update family and get a few hours of sleep.

Rose and I arrive back in ICU the next morning. Dad remains deeply unconscious. When they organise a family conference with the social worker, two junior doctors, his nurse and the head intensivist, you know it’s about turning off life support. I learn later this is called the ‘black hat brigade’. With these sombre companions, we search the brand new ICU complex for a quiet room.

When I studied doctor –patient communication during my PhD, there were entire chapters in the Medical Library on how to deliver bad news. The head of intensive care did it well. He was straight and didn’t muck around. “I’m afraid we’ve reach the point of no return”. His compassion, his body language, what he said – everything made it easier. His life support would be turned off and he would die. But when? There are siblings overseas. In the end, he guided us in putting Dad first and giving him a death with dignity – to leave some time to say goodbye but to not draw things out.

Screenshot 2014-03-06 21.53.49So the next five hours was spent quietly with him. We mulled in the room, holding his hand, kissing his temple, being there. I was in constant contact by phone with my four siblings in Paris, Hong Kong, Brisbane and Melbourne. I held the phone to Dad’s ear as each of them said their last goodbye.

They turned off Dad’s ventilator at 4.30pm and he left us fairly quickly. His beautiful voice uttered its last groan as he exhaled one final breath.

It was the voice that had sung to me as a child “I see the moon and the moon sees thee, shine on the one I love”, or “Happy Birthday dear Julie” each morning of my March birthday. He was gone and I felt a strong sense that he wasn’t there anymore and it was time to leave.

His funeral was a joyous one, a celebration of his life with all five of us kids singing Neil Young’s Old Man and many tributes read. The crematorium chapel was packed.

At the funeral, I conveyed a few small memories that seemed to capture him well. His hand tremor that made us (and him) glad that he wasn’t a surgeon. He was a superb driver, and I always admired the way he would deftly edge in between cars to change lanes – all grace and calm competence. He had a cheeky sense of humour and especially loved telling the Wide Mouthed Frog joke, fingers stretching his mouth across to play the frog. He was quiet but loved just being around people – us kids, his 12 grandchildren, his many friends. He was a superb host and after a few wines was loquacious and fun.

Dad and my son take a spin in a teacup in May 2004.

Dad and my son take a spin in a teacup in May 2004.

He was also wise and pragmatic. He and mum divorced in 1975 but in the process, felt that the lawyers were trying to drive a wedge between them, so they fired them. They remained friends until his death. As branch manager of a paper merchant company, he described his management style as “benevolent autocracy”.

He was also extremely principled. He had been heavily involved in a rotary club which automatically appointed the local primary school’s principal to its board. When a new female principal was appointed, she was unable to serve on the board because at the time Rotary was for men only. Dad resigned from Rotary in protest and never returned. He was a gentleman, always leaping to his feet when a woman walked into the room and always opening doors. He also had a bite and could be pretty tough with you, although mellowed in his later years.

He was generous and humble. In his retirement, he volunteered for Meals on Wheels for many years, driving round with an esky of soup and hot meals in the boot, getting to know all the homebound and lonely people in the area. Then each week he would call the bingo at the Exodus Foundation and fondly regale stories of the colourful characters there. When he left Exodus he did not want his departure marked in any way, his modesty preferring to avoid fanfare.

Dad went at age 77 years. It was too early and seemed unfair. Many of my friends and colleagues are also losing their parents, and for some 77 is still a generous lifespan. It’s still hard to believe he is gone and, one year after his death, it seems fitting that I pay tribute to him.


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MMR, autism and Facebook


From time to time I am asked to comment on vaccine safety issues on Facebook. Today somebody had shared an article entitled “Courts Quietly Confirm MMR Vaccine Causes Autism

Here is my contribution which I am sharing because might help others in a similar position.

Bottom line – the MMR vaccine is safe and does not cause autism.

We all want to do the best for our kids. Protecting them from measles mumps and rubella is important. Measles can cause pneumonia, brain inflammation and sometimes even death. There is an outbreak in Australian right now.

Class actions in the US and UK have found against a link between vaccines and autism. Autism is a serious problem and the cause is not known but it does run in families and affects boys more.

The theory that vaccines cause autism has been studied by independent experts all over the world. The Rolls Royce review is here http://www.iom.edu/Reports/2004/Immunization-Safety-Review-Vaccines-and-Autism.aspx.

Parents wanting a user friendly information might find the MMR decision aid helpful. Sample page linked below: http://www.ncirs.edu.au/immunisation/education/mmr-decision/measles.php 

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