When Christine McMillan arrives at Kingston General Hospital for knee surgery this week, she’ll have an overnight bag packed with warm socks, slippers and the slim teal and yellow book that gave her that packing advice — a collection of hospital tips and how-to’s that she wrote with her neighbours.
From Patients Who Know: A Hospital Handbook acts much like a travel guide, offering practical advice on the language, cuisine, people and customs of what is for many people a foreign land: the hospital. Twenty-five Canadian seniors collaborated with OpenLab, a design and innovation centre based out of Toronto’s University Health Network, to write a common-sense guide to help patients navigate their stays.
“It’s the difference between what the hospital tells you versus what you want to know. The frustrations, the workarounds, all those things that go unwritten,” OpenLab creative director Tai Huynh says.
“In the past, we’ve often thought about what’s easy for us as providers or administrators,” Huynh says. “But it’s patients who bear the burden of it not working properly.”
Available for free download on OpenLab’s website, the nine-chapter handbook includes a packing checklist, definitions for frequently used medical terms and types of doctors, a worksheet to identify various members of one’s care team and even tear-out message cards to help patients communicate.
The seniors who worked on the project live at Oasis Seniors Supportive Living in Kingston, Ont. It’s a unique not-for-profit that transformed an apartment building into one that provides support for people whose care needs are greater than scheduled home-care visits can provide, but not quite enough to warrant being moved into long-term care.
Huynh met with McMillan, who is president of Oasis, and figured that if its residents had found a new way to live, they probably had some ideas about how to refashion the health system, too. Advice from Oasis residents who had recently been in the hospital and a few who visited regularly for cancer treatments became the foundation of the handbook, which was released in October.
McMillan remembers one of her neighbours talking about the hospital’s mystifying use of an alphabet souplike language.
“When you’re going to hospital, they just throw initials around,” she says. “A U-T-I, what the heck is that? Before you can say anything, the doctor is gone and you’re left there going, was it QTI? UTI? And what does that even mean?”
Patient handbooks are not new in and of themselves — Health Quality Ontario keeps a list of resources to help patients, their families and caregivers navigate the health-care system — but this is one of the only guides that included patients in its concept and design.
“The design is definitely more graphic, the language is simpler and some of the content is different — the language around who are the people you’ll meet, what are some of the common terms you’ll hear. This is something we haven’t seen quite as often,” says Amy Lang, Director of Patient, Caregiver & Public Engagement at Health Quality Ontario.
Huynh and his team took a carnival-style approach to their collaboration: They set up a fun fair in the Oasis seniors’ lounge with stations mirroring the book’s chapters in February 2016.
An open suitcase collected slips of paper representing the items one should pack before going to hospital. Another station was a riff on Balderdash. Oasis residents were challenged to guess the meaning of terms like “med rec,” “formulary” or “internist.” (A list of medications or “medicinal reconciliation,” not your medical record; the drug plan, not a complicated calculation; and a doctor of internal medicine, not a doctor in training.)
Along the way, the OpenLab team picked up useful tidbits — leave your walker at home, lest it be swallowed up by the hospital — and learned that patients would benefit from a bit of space to write down the names and responsibilities of their care team.
McMillan’s own advice is on page 15: If you’re transported by ambulance, be sure to confirm with staff that it was necessary and check your hospital bill for any related charges. She learned the hard way when an ill resident was mistakenly asked to pay for an ambulance ride to and from hospital.
“When you’re on limited income, $45 is a lot for administrative error,” she says.
One of the book’s handiest sections is near the end: tearaway guides that prompt patients or their care providers to ask questions and write down medication instructions, expected changes to routines, future appointments and where to go for more information once they’re sent home.
This is crucial for a better patient experience, Huynh says. Traditionally, discharge summaries are written for the family doctor, not for the patient.
“Particularly for seniors, you’re in the hospital and you’re released very early now and so you’re not really as mentally competent as you would like to be, and they come in at the last minute and give you instructions. They’re handing out all this stuff,” McMillan says. “And when you get home, all you can think is, now what the heck was that all about? With this, I think it just clarifies everything.”
Because the handbook is a free download, its success is hard to track. Huynh says he’s had inquiries from at least eight Ontario hospitals asking if it could be customized for their use. He’s eager to work with willing translators, and has been asked to consider developing similar handbooks for pediatric patients and LGBTQ patients.
Huynh and his team are in the process of developing something comparable for social assistance, meeting with people in Toronto who have experience navigating the welfare system. At their first meeting, he encountered a typical confusion: Participants thought they were there to be told by the experts how to do something. Their energy and enthusiasm bloomed when they realized they were considered the experts.
“The system is very much driven by expertise and specialization or subspecialization. Here’s the way you do it, as we the experts tell you to do it. Books like this try to recognize that lived experience is valuable. People become experts as they go through things,” Huynh says.
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