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.

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.

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 - (http://www.cpha.ca/uploads/portals/h-l/report_e.pdf), 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.

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.

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.

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.