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Interview: Award-Winning Scientist Shares New Coaching Tool

 

dr. a o'connor

Dr. Annette O’Connor is a professor at the school of nursing in the faculty of health sciences and a senior scientist in clinical epidemiology at the Ottawa Health Research Institute.

A world leader in her field, Dr. O’ Connor is the first Canada Research Chair in Health Care Consumer Decision Support and recipient of the University of Ottawa’s 2005 Researcher of the Year award. She has spent over 20 years researching how people make important health care decisions and developing tools to make the decision-making process a little bit easier.

AHB reached Dr. O’ Connor in Ottawa.

Ruth Dempsey: You began this work in a time when almost no one else was doing it. What sparked your interest?

Annette O’ Connor: When I started my nursing career in the 1970s, it bothered me that patients had so little information about their condition and their options. How can you take charge of your disease, rather than letting it take charge of you, if you don’t have information to make decisions?

By the time, I started graduate studies in the early ’80s, a new field of medical decision-making was emerging. Most researchers were focused on helping clinicians make better decisions. And a few of us were interested in helping patients participate in decisions about their care.

We focus on the "tough" decisions, where there is more than one medically reasonable option. There is no clear answer for everyone, and the best choice depends on how patients weigh the benefits versus the risks.

In our studies, we found big problems with the way decisions were being made. Patients had inadequate knowledge about options, and inaccurate perceptions of the chances of benefits and harms. Also, clinicians were very poor at judging which benefits and harms matter most to patients. As a consequence, there was a poor match between what mattered most to the patient and which treatments were provided.

Fortunately today, patient-decision aids have been developed, which improve the quality of decision-making. With these tools, patients know more, participate more, and there is a better match between what matters most to them and which treatment option they receive.

RD: How do they work? Can you give me an example?

AC: Early stage breast or prostate cancers are good examples. The doctor explains that there is more than one medically reasonable option to treat the cancer. And the best choice depends on how a patient weighs the advantages and disadvantages.

The patients can get a video decision aid, explaining the options: mastectomy or lumpectomy plus radiation or prostatectomy versus radiation.

The decision aids provide patients with facts about the options, benefits, and risks in sufficient detail to make the decision-making a little easier. They clarify the chances of benefits and harm by helping the patient imagine what it is like to experience the possible outcomes of each option. And importantly, they guide patients in communicating with others involved in the decision.

Along with the video, patients complete a personal decision form that has three sections. First, they indicate what they understand are the key differences between the options. Next, they let us know which features of the options matter most to them. For example, saving the breast may be most important for some patients. And finally, patients let us know where they are leaning, the role they want to take in decision-making, and what other decisional needs they have. By the time their next appointment comes round, they are better prepared to discuss options.

However, decision aids do not replace medical counseling. Rather, decision aids supplement the counseling by preparing patients to discuss options. Also, patients are not asked to make the technical decision. The doctor has already done this by assessing which options are medically reasonable. Simply put, the patients are asked for their informed views on how they weigh the benefits versus harms.

RD: Are health professionals using the aids?

AC: Today, most decision aids are accessed on the Internet; over nine million last year in North America through reputable information providers. For example, citizens of British Columbia and Saskatchewan have access to over 130 decision aids on their Ministry of Health Patient Information Web site.

But, the ideal approach is to use them as part of clinical care. We have ongoing projects in Ottawa, urology services in the United Kingdom, and a network of centers in the United States.

RD: One of the aids is an all-purpose tool? Is that right?

AC: Yes, the health care teams I teach wanted a tool that would work for any decision. So we use the Ottawa Personal Decision Guide not only for health care decisions but also for big life transitions, such as which school to enroll in, which career to pursue, where to live and when to retire. Such decisions often involve other key people, and this tool helps you communicate what is on your mind.

RD: This all-purpose tool involves a four-step process. Are some steps more important than others?

The critical part involves exploring and resolving your needs about three things: what you know, what matters most to you, and what support and advice you have to make a decision.

If you don’t resolve these needs, you are more likely to delay your decision, change your mind, feel regret later on, or blame others for bad outcomes.

The surprise for most people using this tool comes when they are rating the benefits and harms that matter the most to them. This is the "ah ha" moment. It is not how many benefits and risks you can list for each option, but rather the importance you place on the benefits and risks that are driving you toward a certain option. Doing this part of the exercise provides insight, but it also helps others to understand you.

For example, my 80-year-old mother was discussing with my four sisters and me whether she should move to an assisted living facility. She had had a few falls and was worried about security. On the other hand, she was also worried about losing her independence.

Our discussion kept going around in circles, so I suggested we use a decision aid. But since my family has tested numerous decision aids over the past 25 years, there was a loud groan. So instead, I asked my Mom to rate her main reason for and against each option. Five stars means it is very important; one star means it is not important at all.

Mom agreed that the tradeoff was between security and independence. She rated security as five out of five stars and independence as three out of five stars. Then I asked her what that meant to her. She said it meant she should move to an assisted living facility.

What surprised me most is that she rated security as more important than independence, because she had spent most of the time talking about losing her independence. It is often the case that people talk about what they stand to lose. As a result, those listening often infer that this is what matters most to them. The bottom line is: you have to ask.

RD: So what’s next in your research?

AC: We are working with a network of international researchers on several projects, including removing barriers to using patient decision aids in clinical practice and training health care practitioners to use these tools.

However, right now, I would really like to ensure every high school student and guidance counselor has access to our generic decision-making aid. I believe this tool could prove a boon in helping young people work through tough decisions. And besides, these are the next generation of health care practitioners and patients.