Mary Lou Smith on Ensuring Patients' Voices Are Heard

Sometimes patients are so concerned with being good patients that they simply agree to what the clinician has said without fully understanding, and it's important to ask questions and ensure their voices are heard, said Mary Lou Smith, MBA, co-founder of the Research Advocacy Network.

Transcript (slightly modified for readability)

What ways can patients with cancer ensure that their voices are heard when it comes to treatment decisions for their care?

I think one of the most important things is to, as much as possible, take the emotion out of it. Sometimes when people get terribly emotional, people can't hear you. They get so distracted, either because you're raisiing your voice to them or they want to take care of you, but they're not hearing you. And I think that is the most important thing, is to be heard.

Being able to ask questions is almost important, and then get those questions answered fully. Sometimes we are trying to be good patients, and somebody, a doctor, says something to us, and we agree. We may not have gotten it at all, but we're trying to be good, because we want that person to take good care of us, so we want to be seen as a good patient.

With so much information available, what do you recommend for patients newly diagnosed with cancer so they don't feel overwhelmed?

There is so much information—some of it's good, some of it's bad. I think yo uhave to go to credible sources. Mayo has a good website with reviewed and researched answers. I think ASCO [American Society of Clinical Oncology] has a good website for patients. So it's at a level that most patients can understand or at least begin to understand.

I do think, for me anyway, there was nothing in the world that gave me more hope than talking to a woman who had breast cancer, who had survived it, and had a smile on her face and looked good. That made me hope that I could do that too.