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.

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.

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.

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.

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.

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 http://www.nih.gov/news/health/oct2010/nichd-25.htm

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?

Netherlands

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