Janet and Tina Papadakos
Janet Papadakos (L) and twin sister, Tina, longtime patient educators at Princess Margaret Cancer Centre, have launched a Plain Language Course in partnership with the Michener Institute of Education at UHN in hopes of boosting the health literacy of patients by helping healthcare professionals be more clear and concise in their communication. (Photo: UHN)

The instructions seemed simple enough. At a pre-op appointment, the nurse handed the patient a bottle and said before coming to the hospital on the morning of surgery "cleanse your body with this fluid."

A couple of days later, when the patient arrived for surgery, the nurse asked, "Did you have a shower with that soap this morning?" Puzzled, he said, "No. Soap? I didn't do that. But I drank that awful stuff you gave me." A gym buff into juicing, the patient thought the liquid was a body cleanse to drink.

Far from a minor incident of miscommunication, this real-life scenario had major consequences. For the patient, it meant cancelled surgery and delayed treatment, potentially lost wages from future time off work, additional expenses for transportation and parking, and embarrassment. For the healthcare system, there was an underutilized surgical suite and wasted resources, including staff time.

"If he'd actually been told, 'wash your body with this soap to reduce the germs on your skin on the morning of your surgery,' then this mistake likely wouldn't have happened," says Tina Papadakos, Co-Director of the Cancer Self-Management Research Centre, Senior Manager, Educational Design & Knowledge Translation, Cancer Education, Princess Margaret Cancer Centre, UHN.

  Health Literacy Month Logo 

October is Health Literacy Month, a two-decade-old global initiative promoting the importance of understandable health information so people get the services and care they need. It's about being clear and concise in language – written and spoken – with patients and between healthcare providers.

More than 60 per cent of working Canadians have low health literacy, according to the Canadian Council on Learning. That number soars to 88 per cent for those aged 65 and older.

The impact is felt in a variety of ways: higher healthcare costs and poorer health outcomes, less adherence to medical instructions, reduced use of preventive services, delayed diagnoses, poorer self-management and system navigation, lower self-esteem and greater social inequity. 

A six-week, online course

One of the keys to improving health literacy is using language that is more easily understood. It's an idea particularly important when considering patients might be intimidated by being in a hospital or distracted by their condition. Add in the multicultural make-up of Toronto, with so many people for whom English is not the first language, and it's clear there are challenges with health information.

With an eye to boosting health literacy, Tina and her twin sister, Janet Papadakos, Co-Director of the Cancer Health Literacy Research Centre & Senior Manager, Cancer Education Research & Evaluation, at the Princess Margaret, and Provincial Head, Patient Education at Cancer Care Ontario, have launched a Plain Language Course in partnership with the Michener Institute of Education at UHN.

A six-week, online course, it's designed to give clinicians and non-clinical professionals an understanding of what plain language is in a healthcare environment, principles and tools to produce it, and recognition of its value and importance for patients and caregivers.

Since the first class opened to the public in September of last year, a half dozen have been held. Graduates earn a Certificate in Plain Language. There's also work underway to create a more advanced course as well as a "booster" so people who have graduated can keep up their skills.

"When people say plain language is dumbing it down, it's actually not, it's improving the quality and clarity of the content," says Janet. "It's interrogating each phrase and seeing what the opportunities are for misunderstanding or misinterpretation and zeroing in to make them clear, specific and action oriented."

The Plain Language Course evolved over time. For more than a decade, the Papadakos sisters have worked with clinicians and staff to develop patient education resources. The goal in producing these materials is to make them easily understood by patients and caregivers.

'This course has been extremely helpful'

Among the "tricks" they've stressed over the years are first defining who exactly the resource is for and answering why they should read it. This helps clinical experts focus their knowledge. Other tips include using only words with two syllables, restricting the number of words in a sentence to 10 and sentences in a paragraph to five, including lots of white space in print and digital formats and using numbers for lists and bullets to support readability.

They apply many of the same rules to speaking, suggesting clinicians write out the things they frequently say to patients such as treatments or next steps and then edit and refine the delivery.

"It's all about telling complex things to people in a way they can understand," Janet says.

The feedback from those who have earned a Plain Language Certificate has been positive.

"This course has been extremely helpful in providing me with a blueprint for plain language and improved communication," says Dr. Zachary Liederman, a hematology resident. "While medical school taught me the importance of patient-centred communication, I feel that this course has actually given me the tools to achieve this.

"I look forward to further integrating plain language into my practice and research."

'Plain language…is for everybody'

Clinical nurse educator Sarah Rotstein echoes those comments.

"It is obvious that to optimize patient autonomy and outcomes it is crucial to communicate effectively with patients in terms they can understand," she says. "This course has helped me to see not only how important this is but has helped me to implement these skills into practice."

Jargon and healthcare have long been synonymous – patients report forgetting almost immediately 40 per cent to 80 per cent of the information given to them by their healthcare providers, according to a 2013 study.

One course won't eliminate that problem, but it can clearly be part of the solution. If there's a better understanding among the medical community about how overwhelming the environment can be for patients and caregivers, that's the first step to raising health literacy for everyone.

"Plain language is better for people with limited English proficiency, for people who are sick, overwhelmed, scared, busy," Janet says. "If patients are being given a huge amount of information, which they probably are, plain language is better for everyone.

"Plain language is not just for people who would have low health literacy, it's for everybody.​"

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