Thursday, November 17, 2011

Health literacy and palliative care

Today I spoke to palliative care workers from across Victoria and this is the story I told.

As palliative care workers – and associated professionals, I’m sure that everyone wants to tell you their death and dying stories. So today I’m going to tell you mine and hopefully illustrate the role of health literacy in my family’s confrontation with the process of dying.

A decade ago my Dad was diagnosed with mesothelioma and died nine months later, he was 64. I recall that I often, quite accidently, referred to his palliative care worker as “the midwife”. I would ask mum, what time is the midwife coming, or dad, what did the midwife say? I didn’t think about it too much at the time, but in retrospect it occurs to me that midwives and palliative care professionals play very similar roles, guiding people through the big transitions – through pregnancy and birth on the one hand and death and dying on the other. One of the big differences between these two transitions, apart from the obvious - the potential joy inspired by the one event and the terrible sadness associated with the other - is the openness of communication and the flow of information.

There is so much information for women who are pregnant. There is a general hubbub of talk and chatter and gossip; there are endless books and brochures and web sites. There are telephone apps that tell you what your baby looks like week by week; there are bulletin boards, blogs and bibles – telling you how to manage from one stage to the next. Indeed, it’s probably fair to say that pregnant women - particularly white, middle class, Australian pregnant women - are subject information pollution. A plethora of opinion, comments, judgements and urban myth – from every which way; health professionals, family, friends and perfect strangers.

Dying on the other hand is the elephant in the room – in dying there is a silence of information and in that silence there often breeds great confusion, misunderstanding and misery. I am not suggesting that the information isn’t available, or that the books and brochures don’t exist, but it doesn’t flow with the same ease. I’m suggesting that the barriers to information that are everywhere across health and healthcare – barriers brought about by the many social determinants I mentioned earlier - are even more impenetrable when you add the reverence and fear and the cultural silence engendered by the process of dying.

My family is a typically dysfunctional Irish-Catholic brood of seven and each of us had our own strong reaction, opinion and understanding of my Dad’s condition and what it meant. My mother told us that dad was diagnosed with something called “miso something-or-other theloma” and it was lung cancer but it was only in his right shoulder. At one point she even threw in that it usually only affects tall people. We had no idea he had worked with asbestos, he did and he had also wondered over the years if it would eventually catch up with him.

Mum told us he would be able to live with “his condition” for years and that treating it would just make it spread and grow. The reality of course was that his prognosis was poor and treatment was just plain useless. My mum simply interpreted everything the doctors told them according to how she wanted things to be and God help us if we were to question it or suggest otherwise.

Dad said nothing. I think he knew he didn’t have long and was resigned to just quietly coming to terms with it and managing his death as best as he possible could. Deep down, Mum probably knew the reality too, but she nevertheless fully expected dad to continue unaffected, and despite the increasing doses of morphine, she would get frustrated because he forgot to pay bills or the put the bins out or water the garden.

Then there were the siblings; one brother tried to pack Dad off to Perth to participate in trials for a new treatment, a sister decided that the medical profession were lying to us and contacted them all to tell them so, another brother thought he could be treated with breathing exercises and another wanted to delay introducing oxygen because that was “giving in to the disease”. All of us fought over what was best at any given time. We wanted Dad to die at home but he (unsurprisingly) wanted to go to hospital. In his final hours, in a tiny hospital in South Australia, while my brothers drank themselves silly in the car park – Dad was still trying to manage his dying in his own way. His level of discomfort was so great that we asked the staff to increase his morphine but Dad, in his delirious state, said no, no more because he didn’t want his death to be . . . induced.

There was a whole other level of complexity because Dad was entitled to compensation but his case had to be heard while he was still alive. He was determined to do everything he could to make sure that Mum would be paid out before he died and so there were legal documents piled on top of medical forms and prescriptions, bills, appointment slips and instructions for a whole range of medical paraphernalia. We were all learning a whole new language that we had to master in a short time.

I thought Dad’s “midwife” was wonderful given what she had to deal with but nevertheless there are things that may have made our journey and therefore Dad’s journey a little easier. While grief was the overriding factor impacting our ability to function normally, each of us also brought different understandings within the different health literacy domains – and of course none of us was really willing to listen to the other and so really, it just got ugly.

What would have helped us? At the time I couldn't have told you, but in retrospect and with the benefit of hindsight and ten years of working in consumer health information, and the my recent whirlwind tour of the world this is what I can tell you:

  • · Good, accessible, timely information about the disease delivered by a health professional to all of us. Information on what to expect, the prognosis, what the current treatments are and when treatment is actually useful. Information about the progression of the disease and how the dying is managed, when oxygen is introduced, the affects of morphine and how that can be managed etc., etc.
  • · Good quality, interactive information online – maybe even the capacity to talk with other sufferers or families and facilitated by health professionals. My dad spent a lot of time on the internet searching for information and getting frustrated (a decade ago remember)
  • · Information for all of us, family, partners, children and friends on how to support the dying and how to talk about dying, how to acknowledge the elephant in the room and its impact on everyone.
  • · Information that is bite sized, accessible, easy to manage, with short, active sentences and limited medical language that can be read and shared with others. Information that refers to and directs readers to the evidence; to more complex information for those who need to go there.
  • · Information about what is available in the community for the patient, for the family, as well as easy, accessible pathways to support and care.
  • · Structured, inclusive, support sessions where all of the above takes place.

Thursday, September 22, 2011

patient satisfaction unsatisfying

Patient satisfaction surveys provide a way for patients to feedback on the quality of a hospital service. They are very influential because we take them very seriously.
Last week I was working with a group of young women who are experimenting with walking tours to assess the health literacy environment of a hospital. We are using tools developed by Dr Rima Rudd at Harvard university. The young women are in years 10 and 11, so anywhere between 15 and 17 and we had lots of discussion about how to use the tools and what we might learn about the hospital environment. The idea is that they will ask a friend, who has never been to the hospital, to come on the walking tour and to find their way from point A to point B. All the friend will comment on the decisions they make, why they choose one way over another and how easy or hard the signage is to use. The young women found the idea a little difficult, and as earnest young women, were concerned also about getting it right. So we decided to do a dry run - I would be the observer and the tourist/patient would be one of the young women, who just happened to be a relatively newly-arrived Muslim, African woman, quietly spoken with a reasonably strong accent and a little shy (though scarily astute and confident in her discussion afterwards). So we asked her to find her way from the emergency lobby to the pregnancy clinics. She found her way first to the front information desk - choosing people over signage to find her way around and to elicit information. She asked the lovely woman at the front desk "where do I go to for a pregnancy clinic?". Unsure what she had said the woman asked "you want to go to Women's Clinics?" To which our 'patient' answered "yes". So off we all went, to Women's clinics - which is where women go for appointments for everything but pregnancy.
When we arrive, we hang back while our 'patient' goes into the waiting and check in area. She comes back out again within seconds because she is not sure if she is supposed to just sit and wait, or if she is supposed to go to the counter. I go in and I can see her problem - and I can see she is not the first to have had it because the desk staff have tried to rectify the confusion by creating their own signage on bits of paper stuck with tape to the barrier that keeps everyone from naturally approaching the desk.
Our patient approaches the desk and we watch from a distance. Our patient asks "is this where I come for a pregnancy clinic" and the woman behind the desk stands and says in a tone that can only be described as grumpy, rude and ever so impatient "No, pregnancy clinic is over there!" I'm a little shocked. To be honest, I have never seen our desk staff behave like that - indeed I'm always quite impressed by their patience and courtesy. I'm not sure I could maintain it over such a long day. It's possible too that it was a bad moment, a bad day and I think we're all entitled to them - but the interesting thing is what happened next. When our "patient" came back I asked her how that made her feel. Expecting of course that she would say how awful it was, or how the person behind the desk made her feel small, bad, stupid etc etc. What she said was "that was OK, she was just a bit busy." Our patient was completely unaffected by that interaction and I suspect the reason she was unaffected by it was because that's what she is accustomed to.
So, if our patient was asked to complete a patient satisfaction survey - what would she write in answer to the question "were the staff courteous?" She would answer "yes", and we would never know or be driven to work with our desk staff about how to address young African women who don't necessarily have the right information about where they should be going!

Wednesday, August 24, 2011

Bringing home the learning

It takes awhile to process a journey like the one I just had. And the processing is constant - every day the penny drops and then it drops again. For a moment I'm certain I have all the answers and then I have another epiphany. I've written so much about how we could apply some of the things that I have learnt - and I do keep coming back to the same themes (which I will talk about a bit later). But it's not so much about the interventions and strategies that we could adopt, it's how to make them fit, to slip smoothly into the many other pressing priorities of a major hospital - this is the challenge.
While I was travelling, my focus was really about how to build the health literacy of a hospital. Especially one that isn't necessarily central to its geographical community. The big hospitals that have patients across a city, or a state. Hospitals that specialise in a population (women, children) or a set of diseases (cancer); hospitals that are "leaders" or "advocates" but not necessarily strongly linked with their local library, adult education provider or language centre. I set out to learn about how I could support my organisation to become more health literate in a way that was sustainable and useful and aligned to the business, reputation and standing of the hospital in the broader community.
So after two months of mulling it over, what are the key themes that I keep returning to? Collaboration, partnerships, capacity building in staff (training and access to information about health literacy) and good patient engagement. My view is that once all of that is working and working well, then good patient "information" and communication will follow. And whether you are a hospital in a tiny rural community or a major teaching hospital with a statewide focus the models for engagement and communication should be evaluated and written up to be adapted and replicated anywhere.
we are currently piloting an engagement project with young women - to inform our work on health literacy barriers for that population.
More on that later.

Thursday, June 23, 2011

Heading home

Flying home last week, via an unexpected and unwelcome detour to Sydney, I started to wonder how I might go about communicating the massive amount of information I have gathered. Health literacy is a poorly conceived notion in many ways. There are many definitions - all involving abilities and capacities to access, understand, communicate, use and evaluate health information. But the jury is very much out on what it is about health that is so tricky to access, understand, communicate, use and evaluate. Why is it that some people are able to manage relatively well? Is it cognitive ability, education levels, socio-economic status - empowerment, confidence? Or is it an increasingly complex health care system, together with an increase in chronic disease and the necessity for people to manage their own health. Is it a bit of all of those things? At the Health Literacy UK conference that I attended in Manchester, Don Nutbeam (health literacy guru in the UK) pointed out that the broader notion of literacy has struggled for a theory and measurement for many decades. So we needn't panic. The debate will continue and theories and measurements will come and go but in the meantime we need to apply what we do know and in doing so we need to feed the development of those theories and measurements.
So how do we act? What do we put in place to cover all possible reasons for why health literacy might be an issue. Actually, there are some very good starting points - the Calgary Charter, the American National Action Plan, the plain language movement (yes, I know, It's a start but not enough). Rima Rudd's work on health literate environments and the many, many interventions that encourage better communication from health professionals and better access for people who, for whatever reason, have been disconnected from health. As health professionals we do have a role to encourage what Christina Zarcadoolis refers to as generative health literacy - applying information to new or novel situations. And that requires a new understanding of how we all work as patients. How, as patients, we access, understand, use, communicate and evaluate information. And that's hard, because we all do it differently. It's hard but necessary.

Thursday, June 9, 2011

Leeds - Wakefield - Yorkshire

Some great work going on at the University of Leeds. Particularly interested in some research with a critical health literacy bent. One study looking at the links between health literacy and women's decision making about pain relief during childbirth and another study about women, diet and exercise. Researchers here are also looking into diabetes, self management and some really interesting work on the information that comes with the various medical devices that people need to self manage. The findings, rather unsurprisingly found that the misuse of such devices can lead to incorrect readings. Really? (Said with irony!) And what are the consequences of having incorrect readings of your blood sugars and insulin? The European Union requires that information provided to patients passes a usability test but this kind of information slips through some kind of loop hole and is consequently excluded. Crazy.
In Wakefield I met with Sam who has led a health literacy program in the local Primary Care Partnership over the last three or so years. Wakefield and its five towns - are nestled between between Leeds and Sheffield and the population is almost as stable as the beautiful old cathedral that sits in the the town's centre (above). But towns like these bear the brunt of economic crisis and consequently there is a lot of disadvantage. Indeed the town has probably been beset by social issues long before us city dwellers ever used the words economic and crisis side by side in a sentence. Sam comes at health literacy through adult education and, in her pre-Trust life, her job was to develop info and resources for adults to develop skills using their interest in, say, football. Again it is this approach to adult learning which manages to move away from the "threat" of learning - and learning is a threat if you have been disempowered by the experience of education - and instead finds common ground that the adult learner can engage with. Sam's passion has lead to the establishment of the "Barge project". The idea dawned on her one day when she realised that the canals ran through the backyards of some of the most disadvantaged communities. The project has developed its own legs over time and successfully takes out groups of locals; distracts them with the driving of the boat and the sheer novelty of being out and about - a holiday at home for people who just don't holiday - and whether they know it or not these people are developing their health literacy. How? Through cooking on the boat, using a knife, cutting a vegetable, talking about stuff, sharing information. Rules around smoking and using electronic gadgets have the affect of making people realise the benefits of being busy and distracted. Strong community development work - not necessarily stuff that can be taken to my workplace, well not beyond what I have been already gathering on the best ways to engage and to pass on information to people and to create environments that encourage generative health literacy. But certainly this illustrates the obvious benefits of such an approach.

Wednesday, June 8, 2011

Turku - Finland

In the old Finnish capital of Turku, remnants of its former glory are tucked amongst many less elegant structures from the latter half of the last century. There are big cobblestone squares and buildings that have stood for so long they slouch. But there are also big soulless concrete blocks lining the city’s centre; functional, living spaces, businesses etc. But I saw very little of it really, beyond the well worn path from my hotel to the conference centre and the never-dark view from my window. And Turku needs time I think.

I was there for the International Health Promoting Hospitals Conference where a surprising number of doctors and senior hospital administrators, as well as a handful of academics and health promotion practitioners have gathered to nut out the role of the hospitals in promoting health as well as treating illness. The theme of the conference was salutogenesis – which, as I understand it, is a shift of focus from the risks of ill health to the resources for health. So rather than research what makes people take up smoking, consider what it is about the people who never take it up, or drives people to give it up. That’s it in a nutshell. Indeed it is rather similar to the way that Christina Zarcadoolis talks about health literacy. Let’s not focus on what is wrong with people – let’s find what is right about them and build our efforts to communicate around that.

At this conference, I was struck by how many of the health professionals, particularly the clinicians, had developed their interest in health promotion. It really was like a bolt from the blue, like they had suddenly started listening to their patients and realised that there was something wrong with the way that healthcare was being delivered. The classic “aha” moment, where the pieces all fall into place .

Some quotes . . .

“what is the point of treating these people over and over again without addressing the issues that are making them sick in the first place.”

“Health is no longer a thing of its own. It is connected and takes a part in shaping society”.

“The health care system has made massive gains in keeping people alive but not increasing healthy life years”.

It all makes sense – now for the mechanisms.

Tuesday, May 31, 2011

More from Jyvaskyla

Health promotion is firmly entrenched in the Central Finland Hospital District, though the team have hinted that there have been various battles for support, visibility and acceptance in the clinical environment. The universal struggle for resources and conflict over the relevance of health in a sickness environment. (And no, the picture is not of the hospital, I believe it's a soft drink company - I just liked the building)
There are two things that are unique about hospitals here that make the hospital/HP fit a bit easier. The hospitals belong to the community or the surrounding municipalities. That's where funding comes from, it's where the hospital board comes from and there is an expectation that the hospital will provide leadership in this area. And while government makes decrees about health promotion it is up to the hospitals to develop HP strategies and to implement them. My understanding is, if hospitals weren't doing it, no one would be.
From Jyvaskyla it's about 300 ks to any edge of the Central Finland District. The hospital district is made up of three general hospitals and 3 smallish psychiatric hospitals and together they serve a population of around 280,000. HP at the hospital has an internal focus; staff and patients, as well as an external/community focus, including a community bus - or truck actually - that focuses on men's health. It travels the district and gets men in to measure their grip strength, their resting heart beat and their everything else on a funky little Finnish machine that can measure BMI, fat type , muscle density and bone . . . stuff. I went through the motions to learn that I was an average Finnish woman - which is good news apparently.
The internal mechanisms in the hospital were what interested me the most and I was particularly interested in their efforts to engage staff and have them self evaluate their HP efforts and impacts. This is an ongoing process of learning and quite cleverly they are trying to develop ways to engage staff in the process so that it's not just another onerous bureaucratic and seemingly meaningless task. They are also concerned that the evaluation is framed in a wellness mode - salutogenesis is the buzz word. It's about framing the evaluation questions so that it guides staff, in a way, to consider how they might be capturing the "wellness" resources in an otherwise sick patient. It's murky but clarity will come with time.
Health literacy is not a known concept but here I was more interested in the structural approaches to HP in a hospital context. And of course health literacy is central to the HP program as it always is whether you use the langauge of health literacy or not. For example, their wonderful nutrition program in schools provides information to families but rather than structure the information around which vitamins you need, it is stuctured around food. The nutritionist told me that her profession got very excited when the research started telling them about iron levels and folate and how much vitamin C we need etc. and they assumed that other people would get excited with them. But the affect of delivering infomation in this way is that it encourages people to buy vitamins rather than eat well.
Travel to Turku this day and will share some of my adventure with the Health Promoting Hospitals Conference.

Monday, May 30, 2011

Jyvaskyla - Finland

What is the difference between health literacy and health promotion? Well, it kind of depends on your understanding of what health literacy is. If you believe, as I do, that it is about identifying an individual's resources and skills and developing further skills towards health gain and empowerment, then I would say the two concepts are hard to separate. But here's why health literacy is useful and why it should be further developed alongside the health promotion.
It has resonated with the medical profession – provided them with tools, instruments and measures to support them to be better communicators. There's often an assumption that doctors purposefully and arrongantly communicate badly. Not true, (well, I'm sure it is sometimes). Communication is a skill that comes easily for some and not for others. Health literacy tools, particularly those that have come out of the States, fit neatly inside the medical or clinical framework. They are tools that can be written into a clinical practice guideline, they are a set of instructions, steps towards supporting the patient and can be measured and tested and trialed. No, they won't necessarily support patients to be anything more than "compliant" in their current episode of care and the patient won't necessarily feel any more empowered but communications between doctors and their patients will have improved, and by any measure that is a good thing.
Of course, there is a long way to go on this - but it's a start
Health literacy is bringing together the fields of healthcare and education; particularly adult education and ESL and encourging health care providers look outside their worlds to consider what other fields of expertise are offering. Again, not enough but it is happening.
Health literacy has provided a focus on information and has helped us to acknowledge the demands of health information in a increasingly knowledge-based society. I think maybe, that in the context of health promotion campaigns, health information has tended to take a second place to activities, events and social marketing. Brochures and booklets are only a small part of the overall campaign. Health promoters have always considered plain langauge and pictures and accesiblity but not, I don't think, to the same extent as they are considered in the context of health literacy interventions. And consideration for the role of health literacy also makes us think about the ways in which information is accessed, the impact of delivery, the role of functional literacy and numeracy in ways that maybe the health promotion movement hasn't.
So, it has its place and its importance and needs to develop its own theory and framework (something which is still absent). And then it can merge with the developing theories around health promotion - salutogenesis for example! (It's ok, new to me too).
Finally another question and I would love my colleagues to answer it with me . . . If literacy, in its broadest sense, is a skill for health, is health also an opportunity to develop literacy? In other words, should we be using the health encounter; a time when people are open to ideas and information, as an opportunity to promote learning and literacy? A good example of this is the Baby Basics program in New York. It exploits pregnancy, a time when most women want to do the best by their babies, by offering information in a tantilising format. It subtly introduces women to the idea of information use, reading and finding information - in theory, increasing their generative health literacy. They suggest that childbirth education classes be held in libraries so that women, for perhaps the first time in their adult lives, are able to get a library card. In, London the LLU+ - an adult education organisation - work with women who have small babies to "make" books to encourage literacy in their babies but inadvertantly the women themselves are developing their own skills.
Research that was done by the America's national medical research institute, the National Institutes of Health, has found that a mother's reading skill is the greatest determinant of her children's academic success, outweighing other factors such as as neighbourhood and family income. Go read it at
So any concerted efforts to promote literacy in mothers is a plus for the community's health. And if pregnany is an ideal opportunity what should our role be?

Thursday, May 26, 2011


In Holland I had my find my way off the tourist track to Nijmegen and the Canisius-Wilhelmina Ziekenhuis Hospital. A humbling experience; finding the right money (I must get glasses), dropping the money, apologising for being so slow, asking if I was on the right train, not really understanding the answer so having to move to the another part of the train to ask the question again of someone else. Getting on the right bus (thank God), showing the driver the address that I had jotted down the night before, he shook his head and then laughed. He knew the address I'd just written it wrong. Humiliating. Found the hospital, all the signs in Dutch. Had been directed to go to a particular door which didn't seem to exist. Arrived at the front desk - thank goodness there was a friendly open face ready and willing to speak to me. Even better she knew who I was before I even had to speak.
So there it is. What so many people who visit our hospital and hospitals throughout our country have to confront everyday. In Holland most people speak English. They know, from the moment you open your mouth, that you are an English speaker and so adjust their language accordingly. They take it for granted, it's a skill they've had to develop to manage the many langauges that pass their way, but I found it humbling. We have a cultural expectation in our country that people should speak English, it would be odd for us if someone used their own language to say good morning, or thank you, or see you later. In Holland (as with most of Europe I imagine), it's quite normal to not even try to speak the langauge of the country you are visiting (with the exception of France I believe or is that an urban myth?).
Language is of course a major barrier to health literacy - and yet it is probably a reasonable easy barrier to lift - compared to the more nuanced and complex nature of say culture. What I did notice about being in a Dutch hospital was the signage that was familiar to me - the toilets, emergency etc. The symbols that were used were effective, something about the way that the signs were placed made it clear where I had to be. Having said that, I'm sure my experience might have been different if I were say Japanese!
I met with the senior advisor on patient education and we found that we had much in common, which is somehow reassuring. Treasures in this hospital? A fantastic program of online patient communities. The patients, generally those who have chronic conditions, are advised to participate by their doctor and so instead of having numerous appointments with their doctor they regularly particiapte in and online community discussion. Resonates with the work going on at Women's College in Toronto and of course offers the doctor the opportunity to meet with lots of patients at once, is consistent with the notion of "teach-to-goal", which is essesntially a form of persistent nagging - health professional to patient, and is having results in the US.
This hospital also has a good relationship with a ROC, which, I believe (correct me if I'm wrong Dutch colleagues) is much like the Australian TAFE system, Offering an alternative to university study but also offers adult education. This org actually approached the hospital and offered to do an expo on health literacy and since then the hospital and the ROC have worked collaboratively. The ROC regularly sends adult learners to talk to doctors about how it feels to be an adult learners. Another great example of natural partners in health literacy.
More later

Sunday, May 22, 2011


In London I gave a taxi driver a sheet of paper with the address of my accomodation. He looked at it for a full two minutes before handing it back and saying, "I can't read that love". Later in a pharmacy, a woman and her adult daughter were contemplating the chocolate bars. The older of the two took a bar and said "this one, this is the slimming one". Her daughter tried in vain to explain that the bar had reduced sugar but that didn't mean it was actively going to make her slim. Mother refused to listen.

Now there's no reason to suspect my taxi driver had health issues. Indeed he seemed to be an extremely fit and healthy man in his 50's, he was also very charming, witty and had a wealth of knowledge. It's possible that even with his literacy issues he has found ways to elicit good understanding from the many and various situations he is in, including health.
And there's no reason to assume the mother was illiterate, she seemed to be reading, but she had possibly taken information and skewed it according to her own understanding, her own experience, her own desires even.
Who knows really but I just thought I'd throw it out there because on this journey I can't help but see scenarios like these and throw them into the health literacy pot, in the hope that something can cooked up in the end.
London was consolidating in some ways though my learning in the UK is far from over. I travel now in Europe for a bit but will go back to Manchester for the final week of the trip. Health literacy doesn't seem to have taken off in the hospital sector and there seem to be many opinions on that; hospitals are free services and have to stick to their clincial remit, information is produced by other extremely capable organisations so hospitals don't feel a need to do it; health and clinical education in the UK is extremely conservative, heirarchical, clinical so a move to health promotion is a long way off. I'm not entirely convinced and given I have only visited one hospital so far - where the standards and processes for the development of health information and the maintenance of the health information collection is almost entirely driven by risk management and insurance requirements - I shall keep an open mind.
Indeed, for the record, this blog is all unformed (not uninformed); works in progress, observations that really aim to stimulate discussion and to ask any prospective readers to consider some of these issues with me.
More later

Tuesday, May 17, 2011


So, Baltimore. Where the infant mortality rate is 13 per 1000 births. Just to put that in some kind of perspective, across the US the rate is 6.06 per 1000 births. In Australia it's 4.61 per 1000 births and even in our Aboriginal population it's 4.4. The measure of infant mortality is the pulse, blood pressure and temperature of a nation's health. So what's going on in Baltimore? Well, in only a few hours I wasn't going to pick up on all the social and cultural nuances but there are a few clues. For a start, 65% of the population is African American, a population who continue to be a disenfranchised, disempowered and extremely disadvantaged. They lack money, education and opportunity. There are more teen mums, more drug use, more alcoholism. In the naughties - studies found that the infant mortality rate was due to low birth weight babies which could be directly attributable to lack of prenatal care, malnutrition, lack of calcium, folic acid, magnesium and iron. African American women tend to not to breastfeed and a lack of proper bedding and information about safe sleep practices made babies more susceptible to SIDS. Campaigns across the States had a big impact on reducing SIDS amongst the white American population but the rates amongst African Americans remained
unchanged - what does that tell us about the social marketing campaigns?
It's not an unfamiliar story is it? Our disenfranchised communities; the Australian Aborigines, the Canadian First Nations, The New Zealand Maoris, The British travelling gypsies . . . anyway I'm getting off my point but it's important that the back drop hung correctly in case the story is skewed.
Baltimore - so I'm there with the Baby Basics project whose resources have become central tools in supporting "home visitors" to provide women with information and to engage them in their prenatal care. We visit a "Healthy Family Site", a community based organisation which is one of 16 sites in Maryland. They are set up to serve the needs of the neighbourhoods that need them. Charlene, one of the workers describes Baltimore as a city of neighborhoods, with each having its own distinct culture and issues.
The service is funded by the Family League, which is a quasi-government organisation that receives funding from the State government to distribute to healthy family sites.
In recent times, the sites are being asked to transition to a more evidence based model than they have been using in the past. And without fuss they have; adopting relevant practices and paperwork and forms and tools.
Baby Basics is here in Baltimore to see how the project is working here. They are concerned that the Baby Basic philosophy is being adopted - not just the book. Is it being "actively" delivered, are women being encouraged to use their planner, to jot down their questions independently or with help from their peer support worker? Is literacy being supported in the delivery and use of the product?
Baby Basics is a winner here. The workers tell us that women think of it as a "gift". It's often the first book that women have owned for many years and in it is information that switches women on to the idea of learning and yes, reading, or at least flicking through to look for images and small pieces of accessible text.
Infant mortality is reducing in Baltimore. A targeted social marketing campaign, a supply of cribs for families who can't afford them, an aggressive family support program see to be having an impact - though the hows and whys are still being figured out. The journey of the Baby Basic program in Baltimore will be fascinating to watch, I look forward to hearing more about it in time.

More on the US

I want to write about Baltimore though I was there more than two weeks ago now. And there lies the problem with such a whirlwind adventure, it can move way too quickly and the complex pieces fall into place a little too slowly. Now I find myself in London still deeply reflecting on my time in the US and next week I'll be in Amsterdam probably thinking about London and so it goes. The US left me gasping for breath. There, health literacy can be a calling more than a concept. Dean Schillnger at the IHA conference said something to the effect that the health literacy movement are the people who are driven to change the inverse care law - where healthcare is inversely proportional to healthcare need. He then quoted Jerry Garcia (remember, The Grateful Dead?) who said "somebody has to do something and it's just incredibly pathetic that it has to be us". Because who are we in the US? We are a handful of renegade doctors and researchers, some fabulous health and education academics and a whole lot of driven and passionate nurses, librarians, adult education practitioners - people who have "community" running in their veins. And yet health literacy doesn't have a development framework in the US, well not in practice at least. Academics like Christina Zarcadoolis are definitely about engagement and Rima Rudd's work is about understanding the consumer experience but generally the notion of engagement is still relatively foreign amongst the people working in the field. The passion is focused on what we can do to help you rather than on how can we work collaboratively to decrease this communication chasm.
Having said that, in the US there is lots being done. No pussy footing in this country, there is clearly a problem and the chosen are building their networks and spreading the word of ask-me3 and teachback (two very decent tools to improve communication in practice). The academics seem to be doing a fine job of infiltrating practice, of communicating the research and the science in edible bites that can be replicated throughout the country.
Finally, if the healthcare system in the US is underpinned by an inverse care law (not likely to change any time soon) there are policy gestures like the National action plan for health literacy which the chosen few will adopt, implement and create a rumbling change from the ground up.
I really will write about Baltimore and then I shall move my reflective space to London which is where my head needs to be now.

Saturday, May 7, 2011

Irvine California - Institute of Healthcare Advancement conference

Some resources from the Institute of Healthcare Advancement Health Literacy conference 2011

Dean Schillinger brought along a really powerful couple of videos from young folk on food and eating. I found the second one particularly good.

From AHRQ: Health Literacy Universal Precautions Toolkit The toolkit offers primary care practices a way to assess their services for health literacy considerations, raise awareness of the entire staff, and work on specific areas.

From HRSA: Unified Health Communication (UHC): Addressing Health Literacy, Cultural Competency, and Limited English Proficiency is free, on-line, go-at-your-own-pace training that has helped more than 4,000 health care professionals and students improve patient-provider communication.

Heaps more but just wanting to throw some stuff at you while it's fresh.

Friday, May 6, 2011

New York

It takes at least a day to catch up to the pace of New York City, and then another to catch your breath before you start running again. I arrived on a weekend, which gave me a day and a bit to adjust to the honking taxis, the whining and grunting of the endless emergency services, the general hubbub of a city that has outgrown itself. To be honest, for the first 24 hours, I wasn't too sure about New York but an afternoon in central park, an evening on top of the Rockefeller centre and a minute in Times Square after dark and I fell for the Big Apple big time.

My health literacy investigation in NY took me further into the worlds of adult education and literacy. But I was also encouraged to broaden my lense to other fields of study; anthropology, psychology, cognitive sciences etc. Christina Zarcadoolis is one of the authors of the book Advancing Health Literacy and advance it she will. She is at Mount Sanai Medical School in New York and is often quoted - during discussions about plain language - for the statement "simplification is often necessary but hardly sufficient". In other words, yes we have to use plain language and we have to do it well. But there is a bigger picture in which people are disengaged and disempowered and if we wish to improve access to health services and information delivery and utlilisation we need to do more than simplify language.

Christina comes from a background in sociolinguistics and has spend a good three decades studying langauge and vulnerable populations. Her current focus is on user centred design - how patients use information and how health professionals could be more engaging in their efforts to communicate. Importantly her focus is not on what we need to do to communicate with the "deficient" or "broken patient", rather we need to learn more about the patient and patient communities; where they are at, what they need to know and what they will enagage with. Again, the message is engagement!! Her new book will be worth watching out for!

In the US, the health literacy movement has really been driven by the medical profession, which arguably accounts for its visibility in this country. As one of my US colleagues said, if health literacy had been led by adult education it would still be struggling to get a foothold. The fact that it was the Institute of Medicine that released the seminal report A prescription to End Confusion was significant because it gave health literacy the boost it needed. But a medically led and often risk averse model of health literacy adds a certain flavour to the way health literacy is being practiced and the emphasis is certainly on plain language. There are a range prescriptive and clinical methodology to measure and treat patients who have poor health literacy. And while I will be taking some of those "treatments" home to hopefully weave into our quality frameworks I am aware that they potentially fall short because they don't necessarily encourage the kind of generative health literacy that Christina Zarcadoolis describes in her work.

Plain language interventions might support a patient to take their medication or follow a treatment regimen during a single episode of care but are they actually encouraging a patient's health literacy? Does the patient feel empowered to exercise these skills in another health setting at some other time in the future?

The follow up question to all of this though, is what is the role of the health profession in promoting health literacy. Is it to promote health literacy or is it to simply provide a service that assumes reasonably low levels of health literacy and to ensure that access and information, decision making, self care etc. are all provided in a way that is equitable?

I'm really not sure. Though I did see a great model in New York of an intervention that is potentially doing both. The book, What to expect when you are expecting, is a bible for pregnant women in the US. Publicist, Lisa Bernstein discovered very early on though that the book may have been missing the mark for the vast numbers of American women with low literacy. She and the author Heidi Murkoff managed to find funding to produce a low literacy version of the book called Baby Basics. The book comes with a pregancy planner and a whole training session for health providers on delivering the information. The basic premise is that pregnancy offers an opportunity to introduce the benefits of literacy to mothers. Baby Basics is a beautifully presented, simply written booklet that is offered to women as a "gift" at a time when they are hungry for information. The ways in which health professionals are encouraged to deliver the information introduces women to some basic literacy concepts; using an index, pointing to words and writing down questions, just as an example. It is a great model and one that Christina Zarcadoolis has highlighted in her work as well - so worth looking at.

In New York I also spent time with Winston Lawrence from the Literacy Assistance Centre. Winston took me to a Russian literacy class in Coney Island where ESL students were learning about pharmacies and medicines and the American way. Somewhere else in Brooklyn I visited what used to be a women's centre, which has now amalgamated (through necessity) with a much broader program that encompasses a range of community services. I was introduced to a mostly Spanish speaking ESL class who were doing a class in nutrition. Seeing health literacy from this perspective was both a moving and overwhelming experience.

Tomorrow I shall write about Baltimore.

Friday, April 22, 2011

Days 10 -12 Boston

Boston, such a beautiful city! Birth place of the US, civil rights, the women's movement and Dunkin' Donuts. Jam packed with young folk (the average age is 33), making it the youngest city in all of the US. There's almost as many education intitutions as there are students to fill them and yet it's one of the most expensive US cities to live in - which isn't too good if you're a struggling student.
Here I met with Rima Rudd at the Harvard School of Public Health, who I like to refer to as the diva of health literacy in the US. She is widely respected and extremely well connected across the US and Internationally. She started one of the first health and literacy courses back in the early nineties, she was on the Institute of Medicine's expert panel that produced the seminal document A prescription to end confusion and has been one of the key players in pushing a health literacy agenda in this country. Rima's work on hospital environments is being adopted throughout the country and today she took me to the Brigham and Women's on one of her walking tours to experience the "dense literacy demands" of a hospital. The Brigham and Women's is in the heart of the Harvard medical research and hospital precinct. It's a beautful hospital, which in many ways has the feel of a massive and stately hotel rather than a hospital; even more so today with the lullaby of live harp echoing though the grand hallways. But it is precisely this, according to Rima, that creates one of the first potential barriers to access for some patients, particularly those who are already intimidated by the pomp and circumstance of the medical fraternity. Patients aready feel vulnerable and small and even more so if you throw in poverty, language, lack of education etc. Rima talks about patients feeling underdressed and out of place and that's just the beginning.
Indeed the access issues start even before you walk through the door (they start way before that but for this exercise we have at least arrived at the hospital). An issue which is not unique to this hospital - indeed I have had this experience in all of hospitals I have visited so far - is how to get in. Rima asked me to find the main entrance and immediately I am struck by signs such as Ambulatory Care and the Jo Blogs Pulminary Centre - rather than simple descriptors that most patients need. I'm also distracted by other signs such as valet services, parking, emergency care and the list goes on. Anyway, it was a learning and enriching experience to walk with Rima through a hospital and to see health literacy through her eyes. Her approaches to improve the communications nexus between hospitals and the people that use them don't necessarily involve pulling down the buildings and replacing all the signage either. Rather, there are a number of small and simple impovements that hospitals can make - and of course key to that is engagement with the community the hospital is in.

I have added Rima's website which is a veritable treasure trove of information and tools and articles.

Wednesday, April 20, 2011

Days 5 to 9 - Montreal

On day five we travelled to Montreal, again through a bleak and recently snow-ravaged countryside. I imagine in weeks from now it might be green and springing back to life. But for now it is grim shades of grey and spindly, spidery, lifeless trees. It was actually snowing in Montreal when we arrived - which was kind of cool actually, not that the locals were too impressed. The trains through this part of Canada are fast and fabulous and offer wifi onboard, so it was a good opportunity to catch up on emails, do a bit of research and ignore the misery outside. In Montreal I met with Linda Shohet from the Literacy Assistance Centre of Quebec who does great work around health literacy and works collbaoratively with hospitals - a model I would love to be able to replicate at home. I also got to visit St Mary's Hospital and saw a couple of different faces of the Montreal General, just one of the many campuses (six in all, I believe) of the Montreal University Health Centre network.

So rather than bore you with the intricate details of each and every one of my visits (you can read that in my final report) I'll just talk about what Canada has taught me, what I'm left wondering about and what might be able to bring home. I have learnt a great deal in Canada, some of it new, some of it affirming. No one perfect model, but as Adam (my partner) says I'm not going to find utopia in any one place, but I will find pockets of really great work that I might be able to pull together into something of an ideal.

Canada has great pockets of work in health literacy, it's fragmented (as it is everywhere) and it doesn't always identify with the notion of health literacy. For example, there are a number of interventions in the hospital context that are called "patient engagement" projects but the chief aim is improve the way that the hosptial communicates with patients. It begs the question - is an intervention that aims to give a nurse more time to deliver information a health literacy intervention? What about an intervention that involves the patient in changeover discussions, or an intervention that uses patient reps to talk to inpatients about their experience of the hospital? These, and others like them are all being played out in hospitals across North America but are called TCAB interventions or Transforming Care at the Bedside. There may even be pilot projects happening in Australia but I'm not aware of them. The concept of TCAB comes out of the Institure for Healthcare Improvement in the US - I haven't investigated the model or philosohy further but intend to.

The most active pockets of health literacy work seem to be in Montreal and British Columbia (where I didn't visit). There are also pockets of work in research in Ottawa, where of course the decision aid was born. There is not a lot of collaborative work in this area between the research community and hospitals but there seems to be more in primary care and vulnerable communities, chronic illness and self care. I have become aware of a mapping project that is happening out of BC, funded by the Public Health Agency (the government body) and being carried out by the BC university. My understanding is sketchy because the work is still under a thin veil of secrecy but, very simply, they seem to be developing a model for health literacy and gathering existing case studies across the country to demonstrate the model. This work could provide the groundwork for evaluating HL projects in our context. I am emailing the brains behind this project in the hope that I can get hold of some of the work as it becomes available.

Canadians talk about projects as a "piece", I quite like that because it makes you think of each project or intervention as a discreet "piece" of work, with its own aims, goals and outcomes. Even if the intervention is tiny, such as individual white boards for inpatients to keep them informed about staff and daily activities, simple but the health literacy gain is huge. I have collected many pieces for my utopia here in Canada and now I'm off to find more in the US.

At the airport now and the tarmac looks like a lake and the tiny plane that will carry us to Boston is barely visible through the shroud of rain. Nevertheless Montreal is a beautiful city and anyway, my business here is about meeting people, the kind of tourism that doesn’t rely on weather.

Saturday, April 16, 2011

Day 4 - Ottawa

Yesterday met with Health Canada (the federal health body) and the Canada Public Health Association; a non-government body for public health and a significant driver behind health literacy in this country. In fact, the document A vision for health literacy in Canada - (, produced by the CPHA, is a seminal one for health literacy in this country.
Susanne from Health Canada works in the equivalent of our TGA and is mostly concerned (of course) with communicating risk - accessible public health messaging - which is a slightly different demand to assisted delivery of health info. Public health messaging has to attract the public all on its own. I also met with Jamie from Heath Canada's Consumer Information Bureau who's role it is to utilise a range of media for communications. It was interesting though, the parallels between a massive, federal government department and our own comparatively small hospital. Getting buy in from colleagues on the significance of health literacy and the potential impact of deliberate health literacy strategies. Even plain language - Susanne's favourite example adverse reaction versus side effect - can be a challenge. The other issue that came up was pharmaceuticals - medicine labels. This will be worth watching into the future and Canada starts to move towards guidelines.
Greg from the Canada Public Health Association was able to take me through where HL is at in Canada as well as some background info. The Canadians made the link between literacy and health back in the 80s and the notion of heath literacy began to develop in the 90s with impetus from the National Literacy and Health Program established in the early 90's. But CPHAs Expert Panel on Health Literacy which led to the Vision for a Health Literate Canada was a big driver. I have added the CPHAs website because they have a great health literacy portal!! Greg says health literacy is a concept that is still developing traction in Canada, there a pockets of great work, including work that is not necessary recognised or named health literacy, but the links an connections are still being made. We talked a bit about the language of health literacy, the problem - which also comes out of the difficulty of defining health literacy - means that the work is not being captured or measured in HL terms.
We teleconferenced with the Health Council of Canada - an independent org that was setup by the Provincial premiers - or First Ministers as they are called here - to report to the public on the state of health care. The discussion we had was around the intersection between self-managed care and health literacy and programs that might reflect that. Of course one cannot self manage care without health literacy and in many ways health literacy initiatives - to support access, understanding, usability and evaluation have an ultimate goal of promoting self care. More later.

Thursday, April 14, 2011

Day three - Toronto to Ottawa

First of all, a couple of corrections. In my somewhat jet lagged state, I said that both Angela Robertson - Director of Equity and Community Engagement and Catherine Classen, Director of Mental Health - were at Toronto General whereas they are actually at Women's College Hospital!!

Yesterday morning was spent with Toronto General. It's big, thousand of employees and several sites across Toronto. I met with Elke who is the manager of Patient Education and Patient and Family Library. Elke is also one of the drivers behind a growing network of professionals who form the Patient Education Network in Toronto (mostly comprising Toronto General, Toronto Western and Princess Margaret. Elke is also on a volunteer panel with the Registered Nurses Association of Ontario to develop a guideline for registered nurses and registered practice nurse
on "Facilitating Client Centred Learning". The best practice guidelines offer a great opportunity to work, and shift culture with nurses around health literacy - nurses who are often the drivers behind this kind of work. Elke has sent me info to be one of the reviewers of the guidelines when they get to that stage.

Today, Ottawa, Canada's capital. From the tightly packed metropolis of Toronto to the spacious, parklands and French architecture of Ottawa. We arrived by train through countryside that is bleak, brown and wintery. It's the the time after the snow has melted but the grass has not yet grown, the trees have not yet sprouted and the sun does not yet shine; though today it did! We arrived in Ottawa and it was a paddock - the station is outside the city! We caught a taxi into town but again it felt like we were in a suburbia laced with the occasional office block. Near the hotel however is the canal, the beautiful parliament buildings and the overwhelming influence of Europe - who needs Paris?
But straight into work for me. First up the Canadian Institute of Population Health who are developing research projects around the immigrant health and health inequities as well as empowering vulnerable populations to be effective consumers. Health literacy is at the core of these projects and the notion of measuring not just health literacy, but the changes brought about by health literacy interventions are a challenge for the researchers. They are looking at tools that have been developed across the globe to identify one that may work in their investigations. I was asked the question about how we measure health literacy outcomes. More on that later.

After that I took a long a expensive taxi journey to the Canadian Health Services Research Foundation and met with Mireille. The Foundation's mandate is to connect researchers with decision makers. Mireille mentioned the work of Jonathan Lomas - who I am sure I have come across before when have been reading about knowledge translation? Anyway, this organisation is about supporting decision makers - CEOs, managers and policy makers, to use evidence in their . . . decisions!.
The CHSR has a number of funded projects that are about patient engagement - and acknowledge that engagement and health literacy are inextricably linked. The projects, in a number of different kinds of health care and health administration orgs aim to collect data on the impact of different kinds of community engagement projects. So this is not about having patients sitting on committees but training patients to be involved, or interviewing patients about their experience of a service and redesigning the care around the learnings from that. Getting the patient perspective on what they are seeing, experiencing and creating sometimes really simple measures to make big changes. Fantastic. Mireille also told me about the South Central Foundation or the Newcombe model of care (don't quote me on spelling etc - this is all memory right now). It's a hospital that the Canadians are raving about in Alaska whcih has completely handed over "ownership" to consumers and integrated primary and hospital care - worth looking into.
My final meeting was with the Canadian Institute of Health Research, where a number of researchers and primary care doctors have come together to discuss primary care and vulnerable populations. But more on that later, this girl has got to sleep.

Wednesday, April 13, 2011

Day one Toronto

Yesterday I had my very first visit and, lucky for me, it was in a Women’s Hospital so I felt way too comfortable. Day one and I met three great women and already I'm brimming with ideas – despite the jet lag! I’m interested in the Women’s College Hospital for two reasons. The first is that in their promotional materials they clearly distinguish women’s health and highlight the social determinants. The second is their consumer website, which we have utilized at the Women’s on many occasions. The Women’s Health Matters website has a wealth of consumer health information, as well feature stories, an ask the expert option, and other interactive features. It looks great, is appealing for women and is on track to becoming a rich and wonderful site for women.

I met with the director of digital marketing who is working on the redevelopment of the Women’s Health Matters website. The site has undergone a lot of change over the last decade mostly in response to the changing needs of consumers and the ways in which people access the internet and search for information. As an example, Margaret said that people won’t trawl through documents about how to use a website anymore – we have to assume that people will just go looking for what they want and websites have to accommodate that. Margaret has only been in the position for a year; her background is in web marketing and she has mostly worked in the private sector. She brings a particular and dynamic perspective and is clearly working on creating a site that is sustainable and strong despite any possible funding fluctuations. Funding and resourcing projects this big is always going to be a challenge for public hospitals even though there is strong evidence that good information has the effect of reducing the resource drain in clinical areas. Maybe hospitals should be rewarded for initiatives that keep people away. A whimsical thought I admit but merit there somewhere. The Women’s College Hospital has established a funding arrangement with one of the two major pharmacy retailers in Canada (which has a particular women’s health bent).
The hospital has been experimenting wth the idea of online interventions for women. In collaboration with the Princess Margaret Hospital they developed an online support and education program for women with gynaecological cancers about sexuality. It's a closed group that runs for 12 weeks and introduces a new topic each week. At the end of the topic a number of questions are asked on the participants in order to stimulate discussion. Catherine Classen, Director on Mental Health at the Toronto General is one of the collaborators and talked about said that work has been done to evaluate this model but an bigger study is being considered off into the future.

Finally, Toronto General has a Director of Equity and Consumer Engagement. How fantastic is that! Someone responsible for equity and engaging community with equity in mind! It's a new position and is currently filled by a great woman, Angela Robertson - her role she says is to resource and design initiatives to enable access to hospital services. Specifically for marginalised populations who are differentially impacted based on the social determinants. Her community engagement then is about developing community partnerships with equity and access in mind. A key initiative is her convening tables where community, government, health come together to sort out issues of access - health literacy in action across portfolios. Great stuff.

Saturday, April 9, 2011

Arrival - Los Angeles

Arrived in LA at 7.30 am on Friday. As I suspected I had no luck again with my contact at the Shriners Hospital for Children. However, it's good to have a weekend to recuperate before flying to Canada after which the meetings schedule is jam packed! Amazing how many schedule bits and pieces have to be managed so late. Thankfully I am in a hotel in Santa Monica where the WiFi is good and I can spend time emailing with relative ease. Also good to ease into to the USA. To adjust to the cultural nuances (tipping!!!) and to observe the social issues that possible underpin the enthusiasm for health literacy in this country. Poverty and homelessness are hard to avoid, as are the pockets of extreme wealth. Looking forward to coming back in a few weeks to visit the La Habra Clinic, a primary care clinic in LA - the coal face. More later.

Wednesday, March 2, 2011

The countdown

When I applied to be part of the Travelling Fellowship program with the Victorian Quality Council, I remember reading somewhere in the literature not to be too ambitious (in terms of the number of places you attempt to visit). I may have overlooked that advice - a little - though, in my defence, I think a good global perspective on health literacy is very useful. At a time when many organisations seem to be considering how health literacy fits and how they should take it on (if at all), lessons from overseas can be quite powerful; especially as the countries I am visiting are in very different places in terms of their health literacy trajectory. But managing the level of detail is pretty overwhelming when there are so many people, places and organisations to visit; setting up meetings, checking and rechecking that everything is ok, phone calls in the early hours, getting up in the middle of the night to check emails. But it's all part of the fun - perhaps even a little addictive! People have been very generous and helpful though and I feel like I've already developed some nice ongoing networks.
Thirty-six days before I leave. Most of the pieces are in place though there are still a couple of small holes in the itinerary. I'm still trying to make contact with one of the Shriner Children's Hospitals which is in LA. I understand they were an early adopter of a health literacy quality measure around consent procedures. Anyone have a contact??

Tuesday, February 8, 2011

Meeting colleagues

Today I met with colleagues in Melbourne who are considering health literacy plans for their organisations. It's great to see that health literacy has become such a big priority for many services, particularly community health services who are often grappling with ways to work across very diverse communities.
For people who are considering health literacy 'action' plans you may find the website for Health Literacy Wisconsin helpful. It is listed amongst my websites on the right.
Our hospital has done some good work around organisational capacity and is currently considering how to integrate the key concepts of health promotion across the various hosptial policies.
I believe Plenty Valley Community Health is also doing some great developmental work in collaboration with Monash University.
Finally, for all of those who are interested in following a discussion on health literacy and the social determinants of health, I have added a list serv address to my websites (compliments of Spase from the Centre for Ethnicity and Health). There is an interesting discussion underway about whether health literacy is a social determinant or a more downstream issue - a consequence of poor education, social economic factors etc.

Thursday, January 6, 2011

1. About this blog

What the term health literacy means and what it encompasses will be a subject of academic debate and revelation for many years to come but quite simply - for the moment - it is about the many skills, attributes, abilities and freedoms that are required to stay well. It is about the ways in which health information and health knowledge is communicated and how it is understood and received. Our own levels of health literacy are affected by who we are, where we come from, our level of social connectedness and what motivates us at a particular time.

This blog will record my efforts to learn more about health literacy from people who spend a great deal of time thinking about it. In my work as a producer of health information for consumers, I am constantly baffled by the problem of health literacy. Particularly how we, as a large organisation, with a community that spans the State, can increase our capacity to communicate with increasingly diverse communities and to play a genuine role in increasing health literacy.

I have been lucky enough to be awarded a travelling fellowship through the Victorian Quality Council to to further explore an area for which I am extremely passionate. I will visit the USA, Canada, England, the Netherlands and Finland - fourteen cities over about nine weeks. I will meet with health professionals, academics, practitioners, literacy professionals and researchers and attend three conferences. My journey starts in April 2011 but before I go I would really like to meet with similar professionals here to learn about where and to learn from them about the Australian context in their opinion.

I believe I have a lot to learn and I look forward to sharing it with you.