Vickie Micallef’s husband Mike has Huntington’s — Vickie is his primary caregiver. Vickie says that people tend to think of patients as captives. They have no power and are expected to go along with whatever their doctors prescribe.
Time is a major barrier for Joan Barrington, who is a therapeutic clown and the founder of Therapeutic Clowns Canada. Her young patients at Sick Kids want clown therapy more than twice a week. But, despite a child’s needs, the therapeutic clowns can’t be there 24/7.
For Dr. Mike Evans it comes down to location, location, location. Since patients need to go to a specific facility just to speak with a physician, Dr. Mike questions why treatment needs to happen in one place. To mitigate this, he has incorporated an email clinic into his practice.
Lindsay Jibb is a PhD candidate at the University of Toronto’s Lawrence S. Bloomberg Faculty of Nursing. Since funding is limited, it’s difficult for her to seek out a varied representation of patient voices when completing her research.
Collaborating with users to build something new
Jibb worked closely with adolescent cancer patients to build a mobile pain management app. She not only integrated the young patients into the design process, but also got input from their parents and doctors. By engaging patients from the beginning of the design process, she was able to build a functioning app that adolescent cancer patients will use to manage their pain and improve their quality of life.
Embracing failure
Mike and Vickie used to trial-and-error to design a barrier free home. With the future in mind, they transformed their Mississauga condo into a fully accessible space that will be safe for Mike as his Huntington’s progresses. They removed walls, converted a bathroom into a wet-room and made sure that all of their doors and drawers had handles and not knobs. Vickie notes that they made mistakes along the way. But, Mike says that their home is now 80 to 90 percent perfect. As users, they experimented and revisited their design process until they got it right.
Dr. Mike Evans is also not afraid of failure. A few years ago, he thought it would be a great idea to put medication information on hockey cards. They were a flop. His older patients thought they were silly; only his teenage asthma patients found the cards funny. Later, he created a video called “23-and-a-half hours: what is the single best thing we can do for our health?” and uploaded it to YouTube. The video now has over four million views.
Listening to your users
Dr. Mike knows that the healthcare system is reluctant to embrace technology when it comes to communicating with patients. But, he sees an opportunity to connect with patients through digital channels outside of clinic hours. He currently runs email and Skype clinics, but also sees a future where wearable technology will become a part of the doctor-patient relationship.
As a therapeutic clown, Joan Barrington — and her clown persona Bunky — believes in empowering patients through play. Barrington knows that children can’t control their disease, their hospital stay or their treatment, but they can choose if and how to play with a therapeutic clown. The therapeutic clown is part of the child’s interdisciplinary health care team and is a companion for them, and their family, throughout their hospital stay.
While there is no clear-cut answer on how to engage the many voices clamouring to design a better health care system, our DesignMeets speakers continue to spark valuable conversations amongst design leaders and change makers.
Stay tuned for information about our next DesignMeets.