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.