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U of O researcher helps patients navigate medical mayhem
By Pauline TamThe Ottawa Citizen
Monday, June 6, 2005
Annette O'Connor has developed aids that help people understand their choices and take charge of their health, writes Pauline Tam.
Three years ago, on the day the world learned about the hazards of estrogen pills, Annette O'Connor was in Washington, pleading for action from top international health scientists.
A large U.S. study had been prematurely called off after researchers linked hormone replacement therapy to an increased risk of heart disease, breast cancer, blood clots and stroke. Until that point, hormone supplements had been touted for their benefits in reducing menopausal symptoms, and lowering the risk of heart problems in women.
As someone who studies how people make medical choices, Ms. O'Connor was concerned that officials weren't doing enough to help menopausal women make sense of the risks.
"All of a sudden, there were 20 million women on hormone replacement therapy in North America having to make a decision at the same time, which is rather unprecedented," recalls the University of Ottawa nursing professor.
At the Washington meeting, Ms. O'Connor urged the National Institutes of Health to adopt decision-making tools that would help women assess their options. "Nobody was prepared, and there were no tools out there. So basically, I was advocating for better decision support."
The problem was, few procedures were in place to respond quickly to the news.
The same thing happened last fall, when millions of people were faced with a dilemma after the acute pain drug Vioxx was ordered off the shelves because of the health risks it posed to longtime users.
In both cases, scientists not trained in risk communications or emergency response were at a loss as to how to respond to public concerns.
Ms. O'Connor is trying to change that.
At a time when the flow of medical information is vast and fast, the 55-year-old researcher develops decision aids that allow patients to take charge of their own health. They also assist doctors, particularly family physicians, who are expected to do and learn far too much in too little time.
These seemingly simple tools not only help improve decision-making; they give patients more power, control and knowledge in their relationship with physicians. In the process, they help patients address the big health questions that can't easily be resolved during the brief time they have in a doctor's office.
Should a child with attention deficit disorder take Ritalin? Should men with prostate cancer opt for surgery? Do women in menopause require medication? If so, what side effects are they prepared to face?
Decision aids nudge patients to consider whether they have enough information to understand their situation, compare options, and arrive at a conclusion without being pressured. Some aids are designed for patients to do on their own, while others are administered by health professionals, who coach them through the decision-making process.
Ms. O'Connor also directs a laboratory at the Ottawa Hospital that helps patients make high-stakes health decisions. "The focus of our work is on the tough choices, where there are no clear answers, and where you basically have to weigh the benefits and the harms," she says.
Under Ms. O'Connor's leadership, the U of O and its affiliate, the Ottawa Hospital Research Institute, have become renowned experts on how complex medical information is translated from researchers to doctors and then to patients.
For her contributions, the university recently bestowed a $3,000 research excellence award on Ms. O'Connor. The country's research community has also recognized Ms. O'Connor by awarding her a seven-year Canada Research Chair worth $1.4 million.
The study of medical decision-making has been around for more than two decades -- about as long as Ms. O'Connor has been working in the field. It grew alongside social movements to give patients and consumers more rights, and gained momentum as advances in medical technology produced a litany of ethical and values-based choices for patients to ponder.
Ms. O'Connor became interested in the field while working as a hospital nurse in Toronto. She remembers treating a semi-unconscious patient who was recovering from heart surgery. At his bedside, Ms. O'Connor watched as the attending physician spoke to the patient, even though it was clear the man wasn't alert enough to take it all in.
When Ms. O'Connor volunteered to take notes on behalf of the patient, the doctor rejected the idea. "I felt like this is not really the way it should be," she recalls. "Patients should have concrete information."
From there, she made it her life's work to help patients make informed decisions.
During that time, she has witnessed the medical establishment shift from offering patients too little information to giving them too much. At the same time, medical literature has become more sophisticated in presenting the harms and safety risks as well as the benefits of novel therapies.
Even so, the pace of medical research is so fast and relentless that even Ms. O'Connor has trouble keeping her tools updated. "The decision aids we have -- some of them have the shelf life of a banana," she says, pointing to hormone replacement therapy as an example.
Since the cancellation of the U.S. estrogen study three years ago, Ms. O'Connor has been inundated by rapidly changing evidence on the relative risks of hormone replacement therapy. It took so much work to stay on top of the research that Ms. O'Connor eventually abandoned the decision aid she designed on hormone supplements. "It was almost a full-time job focusing on one decision," she says.
These days, anyone looking for a decision aid on hormone replacement therapy can find two on Ms. O'Connor's website (www.ohri.ca/decisionaid) -- both of which are designed by U.S. researchers.
They will also find an inventory of 30 decision aids developed in Ottawa, as well as more than 500 collected from researchers around the world. The tools cover conditions that include breast cancer, osteoporosis, prenatal diagnostic testing, genetic testing, and end-of-life issues.
But, Ms. O'Connor's main priority is to lead an international network of investigators that is developing standards, training programs and a rapid-response strategy to keep pace with sudden developments in health research.
"I think our next big challenge is to figure out how to have a rapid response to new information," she says, "and that's what we're looking at right now."
Note: Reprinted with permission of the Ottawa Citizen