Patients as teachers

Ruth Milikin chats with medical student Ali Damji after a morning in the simulation centre.

By involving patients and families in the unique aspects of a teaching and research hospital – from undergraduate education to clinical research to patient care – Sunnybrook hopes to gain powerful insight to improve the patient experience.

Patients have been added to advisory committees, given feedback to trainees, developed research materials and provided input on food choices, uniforms and more. Continually reaching out to patients, family members and visitors allows Sunnybrook to keep a pulse on what matters most to them.

Patients, real and simulated

Students learn on mannequins and in mock scenarios at the Sunnybrook Canadian Simulation Centre, practising their skills in a safe and non-threatening environment. A first-of-its-kind initiative is now bringing a real patient into the mix to help train third-year medical students on their anaesthesia rotation.

As part of the Choosing Wisely Canada campaign, instructors at Sunnybrook are teaching medical students to engage patients in conversations about tests, treatments and procedures, and to think critically about whether these measures are necessary.

In a simulated scenario held in the centre, students assess a standardized patient – a trained and scripted actor – during a mock hospital visit three weeks before surgery. A real patient, who volunteers to act as a family member attending the appointment, is by the standardized patient's side.

"The students do a patient history and then make a plan for further evaluation: 'Does the patient need cardiology exams or radiology or blood work?' They then come back to the patient and family member to share the plan with them," says Dr. Thiago Appoloni Moreira, who was integral to implementing the patient volunteer program during his two-year fellowship at Sunnybrook.

"This is where the real patient starts to interact. She challenges the students about their plan: 'Why didn't you order a chest X-ray on my brother?' or 'Why did you order the chest X-ray? My brother is healthy!'"

The students must articulate why they made the choices they did when challenged in the simulated scenario. For example: why the chest X-ray wouldn't be done for this patient.

"They have a conversation about this and explain to the family, in layperson terms, why it isn't necessary," Dr. Moreira says.

The first patient volunteer, Ruth Milikin, says she's been delighted to take part in this new initiative. She volunteers once a month in the centre, and so far she has met with nearly 120 students.

"Students at this point in their medical school education haven't had much interaction with patients," she says.

Medical student Sina Rusta-Sallehy agrees.

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"There's so much medicine to learn and remember. This session was a very good reminder that you're treating a person, not an illness," he says.

He says he left the simulation centre with some lasting lessons: the importance of eye contact and taking a moment to listen and genuinely connect with each patient.

Ruth had two surgeries at Sunnybrook recently, and she also spends time talking to the students about her experience as a patient. There's so much anxiety that comes with being a patient," Ruth says. "I remind the students to take a moment to reassure the patient and answer questions. When a patient comes in with a family member to act as a second set of ears, include that family member in the conversation."

Communication is more than an exchange of words, she says, adding that she reminds students also to be mindful of body language and other non-verbal cues.

According to Dr. Moreira, having a real patient in the simulation centre brings it to life. "We have to deal with difficult people and communicate in real life, but it's training our students may not otherwise have until they get into the real clinic room," he says.

"Ruth has no script. She talks to them, shares how she feels, explains what it's like to be a patient trying to communicate with a doctor. She brings an emotional side that will help the students retain what they need to learn. She expresses how she felt in those moments. It's a very important tool."

Medical student Ali Damji says he hopes having patients involved in training becomes a standard: "Some of the most fantastic teachers are our patients."

Dr. Anthony Levitt (below left) says patient and family involvement is key in designing health-care provision. Photograph by Doug Nicholson

Designed by families, for families

Dr. Anthony Levitt knew he had a problem when he was chief of psychiatry at Sunnybrook.

"During a three-week period, three families separately came to me to provide feedback and express some frustration regarding their family member's care as a mental health inpatient," he says. "I thought, 'OK. We need an in-patient navigator.'"

But he took a critical pause before he set out to make that happen: He decided to ask families what they want. "We held two focus groups, and the results were not what we expected," says Dr. Levitt, now chief of the Hurvitz Brain Sciences Program. "Yes, parents told us in-patient care is complicated. But it's the whole system that is confusing and hard to navigate."

And so, with direct input from these families, Sunnybrook's Family Navigation Project was born. It's a non-profit program designed to provide expert navigation of the mental health and addictions service system for young people aged 13 to 26 with serious mental health and/or addictions problems and their families. The project, conceived by families, designed by families and driven by families, continues to engage family members as a core value.

Ingrid Lane has been a member of the project's Family Advisory Council since its inception. Like all of the members, Lane has first-hand, or lived, experience navigating the mental health-care system for her children.

"My husband and I spent many years knocking on the wrong doors to find help for our children," she says. "Those were dark and disturbing days for our family. Through the Family Navigation Project, we can help other families knock on the right doors. And we can help them walk through the doors, ready with the right language and the right questions."

Family involvement in mental health is so important because it's a family issue, Lane says. "When one person is unwell, the whole family is unwell."

Jeanne Foot agrees. She's the chair and a founding member of the Family Navigation Project and sits on the Family Advisory Council. "Combining clinical expertise and lived experience has the best results," she says. The advisory council assists in hiring staff, provides program feedback and gives a quick pulse on all decisions with respect to the project. "We are a voice in the system, and it's working. The work is applauded because it's shifting the system."

Not including patients and families in conversations about the health-care system is a costly mistake, she says.

In addition to the Family Advisory Council, the Family Navigation Project gets feedback from parents and patients, both informally and through satisfaction surveys. "The families we serve are constantly updating us, and we tailor our program to their needs," Foot says. "And our program doesn't change without debate, input, discussions and spontaneous ideas from our Family Advisory Council. It's built into our culture now. "

While the program may continue to change and grow, one thing is certain, Lane says: "We know that the voice of the parents will always be an integral part of the program."

Listening to lived experience at every part of the health-care sector is crucial, Foot adds. "It's so important to understand the needs of the family and know we are better when we are all working together," she says.

Dr. Levitt says many health-care professionals are not aware of the value of involving families and patients in system design. "If you invest the time in involving families, the returns are immense," he says. "We couldn't have conceived, or implemented, the Family Navigation Project without parents with lived experience."

A WATCHING BRIEF
Studies have shown that as many as 87 per cent and as few as 30 per cent of North American health-care workers regularly wash their hands. Yet, hand hygiene is known to be the best way to keep people healthy while they’re in the hospital because it reduces the spread of bacteria and organisms. It’s so important, in fact, that Sunnybrook has hand hygiene observers who go from unit to unit, evaluating whether staff members are remembering to clean their hands. This observation approach works for most areas of the hospital, but not all. “Having a hand hygiene observer sit in on an appointment in Family Practice could be uncomfortable for the patient. We could be talking about sensitive information or doing an exam, and they might not want another person in the room,” says Dr. Jeremy Rezmovitz, staff physician in Family Practice at Sunnybrook. “So we thought, ‘Why not have the patient take on the observer role?’” This idea developed into Patient as Observer, a unique initiative that engages patients in their own care. When patients arrive at Family Practice, they’re handed a form and asked to observe their health-care provider’s hand-washing performance. Patients are asked to focus on evaluating each of the four “moments” of hand hygiene: before any contact with a patient, before a procedure, after a procedure and after any contact with a patient. So far, Family Practice has done three one-week blitzes, collecting 200 patient observation forms each time. The results have been encouraging, with the unit’s hand hygiene compliance rates consistently coming in above average. “Our patients enjoy being engaged. They like being a part of something bigger,” says Dr. Rezmovitz. The Patient as Observer program has already spread to other areas of the hospital, including the Odette Cancer Centre, and expansion into other program areas is on the horizon.

A WATCHING BRIEF

Studies have shown that as many as 87 per cent and as few as 30 per cent of North American health-care workers regularly wash their hands. Yet, hand hygiene is known to be the best way to keep people healthy while they’re in the hospital because it reduces the spread of bacteria and organisms. It’s so important, in fact, that Sunnybrook has hand hygiene observers who go from unit to unit, evaluating whether staff members are remembering to clean their hands.

This observation approach works for most areas of the hospital, but not all. “Having a hand hygiene observer sit in on an appointment in Family Practice could be uncomfortable for the patient. We could be talking about sensitive information or doing an exam, and they might not want another person in the room,” says Dr. Jeremy Rezmovitz, staff physician in Family Practice at Sunnybrook. “So we thought, ‘Why not have the patient take on the observer role?’”

This idea developed into Patient as Observer, a unique initiative that engages patients in their own care. When patients arrive at Family Practice, they’re handed a form and asked to observe their health-care provider’s hand-washing performance. Patients are asked to focus on evaluating each of the four “moments” of hand hygiene: before any contact with a patient, before a procedure, after a procedure and after any contact with a patient.

So far, Family Practice has done three one-week blitzes, collecting 200 patient observation forms each time. The results have been encouraging, with the unit’s hand hygiene compliance rates consistently coming in above average. “Our patients enjoy being engaged. They like being a part of something bigger,” says Dr. Rezmovitz.

The Patient as Observer program has already spread to other areas of the hospital, including the Odette Cancer Centre, and expansion into other program areas is on the horizon.

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