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

London

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

Baltimore

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.

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.

• “The Corner: Jose Vadi” http://www.youtube.com/watch?v=hbJdibxwcMY
• Death Recipe: Erica McMath Sheppard http://www.youtube.com/watch?v=XmfFGn-R1CI

From AHRQ: Health Literacy Universal Precautions Toolkit http://www.ahrq.gov/qual/literacy/ 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.http://www.hrsa.gov/publichealth/healthliteracy/index.html

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

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.