World Immunisation Week 2016

This week is World Immunisation Week, celebrating the achievements of vaccines. But for a handful of people, every week is Immunisation Week – advocates, policy makers, immunisation managers, health professionals, and researchers who live and breath immunisation every day of the year.

My week has been a snapshot of immunisation research, programs and controversies so I thought I would take you through it.

Monday is a public holiday but I check out the new campaign from Victoria. It is aimed at reminding the public about the benefits of immunisation for individuals and the community. Here are Caitlin and Liam talking about their son who cannot be immunised and relies on the immunisation of those around him to help protect him from vaccine-preventable diseases.

Tuesday starts with a 5.30am teleconference with people in the US. A small group of us have been talking for over a year about an International Collaboration on Vaccine Acceptance. We want to bring together a multidisciplinary group of researchers and program managers to help improve the evidence base on addressing vaccine hesitancy and refusal. Each fortnight, we share ideas about our aims, how we can move this forward and find some funding. Despite the global attention on vaccine hesitancy, finding tangible support for research and collaborations remains difficult.

Later that day I meet with staff at NSW Health to update them on our SARAH project.  SARAH stands for Support And Resources to Assist Hesitant parents with vaccination. It is a system to be embedded in primary care that aims to optimise communication and the use of tailored resources during vaccine discussions. Last month we conducted 11 focus groups with parents who looked at the draft resources and told us what else they want in vaccination conversations and information. We are now getting feedback from program managers on the acceptability of the planned package. Later this year we will return to GPs and nurses to road test our refined package.

Then I am off to Tamworth to spend Wednesday morning with Amy Creighton, who is finalising her Master of Philosophy thesis. Amy is a Gomeroi Murri woman whose project is called “Gaba Binggi (Good Needles): Developing an understanding of how two First Nations communities see and experience immunisation during pregnancy”.  She has been undertaking this research with support from Hunter New England Population Health and the NHMRC Centre of Research Excellence in Immunisation of Under-Studied and Special Risk Population Groups. It has been a privilege to work with Amy and her other supervisor Peter Massey throughout this project. I have learnt from Amy what it means to practice and reflect cultural respect in research and health services – lifelong learning.

Waiting to catch the plane back to Sydney, I begin thinking about an upcoming interview on ABC Classic FM’s Midday program. I get to choose five musical items and we intersperse them with discussion about my work and life. Doing media interviews is like jumping out of a plane – exhilarating and terrifying all at once. For this program I am enjoying the prospect of sharing some favourite musicians, including my brother, Adrian Brand who is a professional tenor living in Paris.

This morning I meet with another student who, like Amy, is researching community views and practices around vaccination. This time it’s with people who actively reject childhood vaccination. Catherine Helps is interviewing parents in the Byron Shire of NSW. Despite so much public commentary on vaccine rejectors, there is very little research on this topic, with the last major set of studies were done in Australia in the 1990s. We need to get beyond the stereotypes and better understand this phenomenon if we are to approach it in a constructive way.

Another teleconference – this time to discuss a paper that I and colleagues are writing that covers the deeply concerning decision of the University of Wollongong to award a PhD based on a largely erroneous critique of vaccine policy making in Australia. More on that later.

Later on I update a workshop I will run with postgrads at the University of Sydney. The workshop asks students to break into groups representing different community and professional perspectives on vaccination. They are given an evolving scenario, starting in 2013 with a report of low immunisation rates in Australia. As the scenario unfolds they get more information. This enables the students to experience the complexities of vaccination policy decision making.

Tomorrow morning our CRE group will meet to do further planning on a round table with the Aboriginal and Torres Strait Islander Community Controlled health services sector. We will revisit the issues raised at the first round table four years ago and look at what we have learnt and where to next in supporting immunisation with First Nations peoples.

Then I have a TV interview with Prime Seven News*. I have been asked to comment on immunisation rates in different regions. As with most TV interivews, the ratio of preparation and organisation to air time is about 4000 to 1 and sometimes the interview is not played at all. You need to be extremely succinct and be at peace with over-simplifying everything.  Otherwise your important points will end up on the proverbial cutting room floor. So I plan to convey the following simple messages:

  • Vaccination helps protect your kids and the wider community.
  • Parents should make every effort to vaccinate their kids on time
  • Health professionals need support to deliver vaccines to kids
  • Governments need to make vaccines free, easy to get
  • Everyone has a responsibility to make sure they are up to date with their vaccinations. Ask your doctor about whether you need a booster. And as the flu season approaches, check to see whether you are eligible for a free flu vaccine and have it soon.

I may also draw on the findings of a paper we published last week that showed that vaccine objection rates have not increased markedly in Australia. However, they continue to make a significant contribution to under-vaccination in Australia.

Saturday afternoon sees the end of my Immunisation Week with a two hour workshop on vaccination policy dilemmas with students undertaking a Master of Health Policy at the University of Sydney.

*Postscript: racing back to the university for my interview, I get a text saying that it has been postponed. It is not unusual for media stories to be cancelled or not used due to competing stories or other circumstances. It’s one of the realities of working with the media.

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Childhood vaccination rates in 2015: what, why and what next?

A new immunisation coverage report has been released by the National Health Performance Authority. Here it is with key statistics and excellent visual aids. The report doesn’t attempt to explain the changes in immunisation rates, nor why they are low in some regions, so I’ll attempt that in this blog. At the end is an update on the ‘No Jab No Pay’ policy.

What did the NHPA report find?

90.9% of children were fully vaccinated in 2014-2015;

9.1% were not fully vaccinated. That was 84,571 children aged 1, 2 and 5 years;

Only 2 of 31 regions reached the target coverage of 95%;

Compared with the previous period there were promising increases in 1 and 5 year old immunisation rates but still room for improvement;

There was a reduction for 2 year olds most likely because two new vaccines were added to the requirements. (Like adding a harder set of questions to the NAPLAN test for stage 3 in 2015 so their national grades appear to decline slightly);

7 regions increased coverage for 1 year olds with biggest leaps in outback South Australia and the Gold Coast, parts of the central highlands of QLD, parts of the North Coast and parts of inner Sydney;

At a postcode level the lowest rates are in Katoomba, Leura and Medlow Bath; Parramatta and Brunswick Heads, Ocean Shores, South Golden Beach, Burringbar and 10 nearby towns. These are different communities with different reasons for low vaccination rates and one size won’t fit all but clearly, more should be done.

What does this report tell us about No Jab No Pay?

Nothing – the No Jab No Pay amendment bill was only introduced this year and we shall have to wait until next year’s report to see any impacts. Journalists should not report any causal connection between a January 2016 policy and 2014-2015 vaccination rates. Reporting the announcement of the policy in April 2015 as affecting these rates is highly speculative without having more granular evidence.

 

Why don’t some children get fully vaccinated?

Among the 84,571 children noted as not fully vaccinated there are 84,571 different reasons. A significant percentage are actually up-to-date but there was a recording error. And the rest? We don’t know for sure and understanding this group better should be a priority now that vaccine objection is not recorded.

Research suggestions that parents or caregivers either don’t accept vaccines or just face practical and logistical difficulties. See here and here for more information.

A recent paper outlined a simple and memorable group of reasons for under-vaccination – the Five A’s, developed by Angus Thomson and colleagues (below). This schema would group vaccine objectors under the lack of Acceptance banner. The detective work is in finding the degree to which each factor contributes to that 9% who aren’t up to date and of course it varies by age group and region.

 

 

Screenshot 2016-02-17 22.37.20

Source: Thomson A et al / Vaccine 34 (2016) 1018-1024

Why was there a general increase in rates for 12 month olds and 5 year olds?

  1. Some regions made a concerted effort to clean up register data and update records for children who were actually vaccinated. Western Australia has done lots of work in this regard.
  2. Much more attention was paid to vaccination rates – this was the year following the first NHPA report’s release. Communities got to see their own rates for the first time and there was more public and political pressure and hence resourcing and action.
  3. Some communities and individuals galvanised more local positive action and national awareness. See for example the Northern Rivers Vaccination Supporters, the WA Immunisation Alliance, and the Light for Riley campaign
  4. National Immunisation Strategy 2013-2018 which includes improving coverage as a priority.
  5. Incentives motivate people but they also motivate governments. From 2011-12 states and territories were given a reward payment for meeting certain vaccination coverage targets. Check out the informative review of the Review of the National Partnership Agreement on Essential Vaccines with loads of useful general information about our national program and how it’s going.
  1. Other? Readers are welcome to share their thoughts via comments.

When will we know more about the impact of No Jab No Pay?

Next year’s NHPA report will reflect the impact but see here for more recent vaccination rates.  For more detail on No Jab No Pay and the other reforms surrounding it, read my previous blog.

What has been the impact so far of No Jab No Pay and its ad-ons?

A refresher:

No Jab No Pay is a change the national rules for receiving family assistance payments and No Jab No Play relates to three states (Vic, QLD and NSW) with variations on a theme of childcare exclusion for the unvaccinated.

No Jab No Pay is from the Department of Human Services and involves tightening to existing requirements for receipt of FTB-A supplement, Childcare Benefit, Childcare Rebate: (1) no more exemptions for vaccine objectors; (2) it’s audited every year now; (3) and audited up to age 19 years instead of just 5 years.

The national ad-ons from the Department of Health include: (1) free catch-up vaccines for children over 7 years; (2) incentives to catch-up children; (3) expansion of the ACIR from age 7 to age 19 and eventually to whole-of-life.

Policy impacts so far:

There are encouraging accounts of parents who were previously vaccine objectors getting their kids up to date, e.g., a nurse who is “doing almost nothing but vaccination at the moment”. Some parents are very anxious but report the next day that their child is ok. However, others remain angry and resentful, feeling coerced into making the decision because they cannot afford to miss the payments. Occasionally such parents front up to providers in an aggressive manner, demanding they immunise the children. Some providers in this situation refuse to vaccinate as they believe valid consent has not been obtained.

Yesterday, I received an email from Angela Newbound, an experienced immunisation coordinator in a major metropolitan region. She noted major implementation issues mostly from problems recording or updating the Australian Childhood Immunisaiton Register (ACIR) and was keen to share them. She mentions problems faced by providers (GPs, nurses and Aboriginal Health Workers who give vaccines) and parents:

  • Primary Health Networks not being given access/full access to the ACIR secure site until March, rendering them helpless to provide much practical assistance, despite the considerable expertise some of their staff have as the ‘ACIR Whisperers’.
  • ACIR data being inaccurate because of provider recording error (ACIR is quite particular in how data must be entered).
  • Providers being unable to update address details of client/patient on the ACIR site meaning they direct the parents to contact Medicare which becomes problematic for people with low levels of computer literacy, language literacy (both English and their language of origin) and physical, psychological, social and geographical disadvantage. Changing these details is important for reminder letters.
  • Clinics who are overwhelmed with catch up and ACIR arrangements being almost unable to cope and having no extra resources to address this.
  • Families who are facing financial hardship because they won’t shift even with the new requirement
  • Families who don’t have the resources/knowledge/access to arrange their GP or clinic to document catch up and therefore also facing financial hardship despite their desire to vaccinate.
  • 2 adolescent children were re-vaccinated because even though they were up-to-date, parents could not find the paper record of vaccines because they were given after the children turned 7 when the register only recorded up to 7 years.

An extension to the grace period for catch-up until at least 1st July may be one option. A delay in implementation was something we both advocated for to the Senate hearing and supported by the Greens but it was not heeded.

There is no doubt that the implementation is very challenging for all involved, including the public servants working in the health department, with the ACIR and in Centrelink who have been given about 6 weeks from the final passage of the legislation to implementation of an extremely complex system.

Conclusion

There are two goals here: one is to ensure children are vaccinated and another to ensure that vaccination programs are implemented so that the wellbeing of children who fall through the gaps is not compromised through financial hardship or lost educational opportunities. Our generally high vaccination rates show what can happen with comprehensive and well-oiled systems, good record keeping, incentives, free vaccines, supported providers and motivated parents. To address the persistent gap in coverage, government has, or has come close to, making vaccination compulsory. To keep their part of the bargain, government has a responsibility to ensure that the services and the register work well.

Public servants, program managers, local coordinators, health professionals and parents are working very hard in the circumstances to implement a complex policy in a very short timeframe. An extended grace period would provide more time to iron out some of these major issues.

Finally, government has a responsibility to evaluate this large national experiment. It’s promising news that there are accounts of children getting vaccinated. However, all the impacts of No Jab No Pay/Play will need to be evaluated. Right now there are no apparent plans from government to evaluate this policy and the opportunity to do so in real-time is dwindling.

 

 

 

 

 

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“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

Positives

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.

Negatives

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.

Verdict

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.

Positives

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.

Negatives

Could affect lower income families much more.

Verdict

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


Side dish: Expanding requirements to age 19

Positives 

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.

Negatives

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.

Verdict

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

Positives

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

Negatives

Hard to think of any negatives.

Verdict

That’s Gold!


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

Positives

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.

Negatives

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

Verdict

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


Health Department side dish #3 Education and communication

Positives

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*

Negatives

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

Education can sometimes make things worse if done poorly.

Verdict

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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