Imagine that you have asthma, and rather than give you a set of instructions about what to do if you have an attack, your doctor invites you to help write them?
Would that make patients feel more engaged and empowered in managing their health care, and would that ultimately make them happier if not healthier?
These questions are being raised by Dr. Samir Gupta, a respirologist at St. Michael’s Hospital.
His research has found that a wiki – a website developed collaboratively by a community of users, allowing any user to add and edit content – can be an innovative new tool for developing individual asthma action plans.
“We’ve introduced a new way of getting patients engaged in developing tools that might improve their health,” Dr. Gupta said. “We’re empowering patients, involving patients in the health care process.”
Dr. Gupta said a lot of asthma action plans – a one-page set of instructions for managing a patient’s asthma – are developed by experts without input from patients or the clinics that distribute them. When they are difficult to read or understand, patients don’t follow them, especially these days when health care providers face competition from such things as the Internet and iPad apps for patients’ attention.
He got together a group of respirologists, patients, family doctors and asthma educators, set up a wiki and allowed them to choose their own content, fonts, colour and design for an asthma action plan. There were also voting mechanisms to select choices and a blog to explain them. Participants could log on as often as they wanted.
He said the results were collaborative and without the frequent hierarchical issues that can define the patient-doctor relationship.
“People were very engaged,” he said. “People logged on regularly and all the time. There were lots of comments, lots of rich discussion. The end results were highly useful.”
Dr. Gupta said this method of decision-making could be used in other medical fields, as well as in marketing, where consumers could have a role.