Interview with Trisha Torrey

by John Novack, Dir. of Communications, Inspire.com

Periodically, we at Inspire interview people we feel are making contributions to helping patients worldwide. To kick off this feature, I spoke with patient advocate and author Trisha Torrey (www.everypatientsadvocate.com), a nationally recognized writer, speaker and workshop teacher on issues related to patient advocacy. A former marketing executive, Torrey became a patient advocate after enduring a misdiagnosis of cancer in 2004. She is the author of the book, You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Healthcare You Deserve).

Inspire: Amid all increasing references to “epatients,” you use a term, “em-patient,” for “empowered patients.” Why “em-patient?”

Torrey: I spent 20-plus years as a marketer, long before I thought I’d have anything to do healthcare. The only reason I have anything to do with healthcare is that I had my own run-in with the system. As a marketer, you always want words to have the same meaning to everybody. But the word “epatient” could be interpreted differently because of the “e” in front of “patient.” Email, e-commerce, it has to do with being on the Internet, right? Being online and learning things online is a subset of everything that it means to being an empowered patient.

Inspire: Being able to go online for resources and support is key, though, correct?

Torrey: Well, the reason I use the term “em-patient” is because I’d like to see something that encompasses the entire experience, which includes how you communicate with your providers, to ensuring that you’re safe in the healthcare, to how to look things up online and make sure it’s credible information. Patients who aren’t online don’t have to feel left out.
Inspire: We see a challenging paradox in which patients want to feel empowered, want to be on more of an equal footing with their caregivers, but it’s tough to rise to that challenge when you’re ill, regardless of your education, your support structure, etc., true?

Torrey: When you’re really sick, when you’ve just been diagnosed, when you’re really afraid, you likely don’t have the wherewithal to be an empowered patient. My example is, say that I just got diagnosed with cancer. I’m upset, I’m afraid, I have a million questions, but at the moment I can’t cope with my own emotions, let alone handle additional information. So I come home and stew with the emotion for a period of time. Now, for some people in that situation, that’s going to take a few hours, for others, it’s going to be a few months. Until they get past that emotion, they’re not going to be able to do anything to empower themselves around that one particular diagnosis.

Inspire: It’s not an all or nothing situation though, correct? “You’re an empowered patient or you’re not,” is not what you’re saying.

Torrey: Not at all. That’s not to say they haven’t been empowered before. A long-term diabetes patient, for example, who has taken control of their diabetes, if that patient gets a cancer diagnosis, for the moment, she’s not empowered about anything having to do with the cancer. So, until they’re ready to deal, they’re going to look to some other way, like a family member helping out, or they have to just depend on their doctor, or they have to hire an advocate. But I suppose that is what empowered really means—and that is where you are in any given moment, knowing there are tools out there to help you. You just have to choose the right ones at the right time.

Inspire: In the Inspire community there is some sharing of clinical information and some guidance on selecting clinicians, but there are very many discussion strings that are underpinned chiefly by statements of empathy and understanding that a fellow community member is hurting. And those statements, seemingly simple, are extremely powerful. Does that surprise you?

Torrey: “We hear you, and we care, and we will fill in the gap when you need us,” are powerful magnets. I think there are a couple of aspects to all of this. First, one of the big things you’re talking about is the difference in the way women and men communicate. There are studies that have been done on this, but the basics are that women, when they reach out to someone, what they’re looking for are those comforting noises. And those comforting noises say, “You’re not alone, you’re not the first person who has had to deal with this, and therefore there might be some answers for you, and number three, we’re here for you when you need us.”

Inspire: And men?

Torrey: On the other hand, men, in that kind of outreach, are looking for someone to provide them with solutions. When you’re dealing with emotions like fear, sadness, or frustration, those are like holes that need to be filled. You’ve heard about this in breakups in relationships, and all of a sudden there’s a hole in your emotions that needs to be filled, and that’s why people get married a second time too fast, or they get into things that they shouldn’t be involved in, because rather than dealing with the emotion, they’re looking to fill the void. I think that’s a lot of what communities do. They rush in to fill those holes, those voids. If I’ve been diagnosed with a disease, and my body has basically betrayed me, and I need something to fill that void, if it’s 14 people in an online community saying, “We are so sorry and we’re here for you,” that helps me fill the hole—even if it’s temporary. It helps me to know I’m not in it alone. I don’t know if this would have been as effective 20 years ago, when we were still operating under the paternalistic and benevolent “Marcus Welby, MD” model.

Inspire: How so?

Torrey: Then, we didn’t need as much other support from outside sources. The doctors then made you feel like you were being supported. There was a greater sense that your doctor was more empathetic. Now, too often, it’s this cold scientific approach, like, “Well, we ran the test and I’m sorry to tell you you’ve been diagnosed with ‘x’ disease, and what that means is you’ll have to come back here and we’ll start treatments,” and so forth. It’s an entirely different conversation than years ago. Nobody’s helping deal with the emotions yet. And patients have to do that first.

Inspire: Back to the topic of patients researching their medical conditions, or caregivers doing so for their loved ones. How can patients be more effective in communicating research they’ve found with their physicians?

Torrey: Fair or not, physicians’ time is constrained, so the first thing you want to do is to acknowledge to your doctor that his or her time is constrained. Saying this takes the docs off of the “time defensive,” where, if they see you carrying a raft of clinical papers printed off the Internet, they’re thinking, “Oh my God, I only have four minutes with this patient and I’ll never be able to have this conversation with this patient and get on to my next patient.” So, an acknowl­edgment of the short time is a good way to start.

Inspire: Let’s say you get good feedback from that opening discussion. What next?

Torrey: I tell patients to not show up with printouts from the computer. Do not. Be well enough versed in what the printouts say that you can carry on the conversation. Walking in the door with the raft of papers from the Internet is the visual clue to the doctor that there’s going to be a problem with your meeting. From the doctor’s point of view, he or she has had years of medical school and training. If you show up with information from the Internet and just present it like that—that comes across as if you are saying that your hour on the Internet is equivalent to their years of medical school and their experience. Now, your investment in your disease or condition certainly is as big, if not bigger, but your experience with it is not.

Inspire: Perhaps there is information you got off the Internet that’s valuable, though, and it’s tough to memorize it and be able to discuss it with your doctor.

Torrey: But the minute you show up with a bunch of printouts, most doctors will go on the defensive, and that’s not where you want to start a conversation. A way to approach this issue is to say, “What do you know about ‘x’ topic?” and let the doctor respond. If the doctor says that he or she had never heard of that topic before, then you can say, “I found information about it and I’m trying to gather more information because it’s something I’m interested in.” If the doctor discounts the topic as it relates to your medical situation, for whatever reason the doctor does that, then listen to your doctor. It’s not that you wouldn’t do more research on it; it gives you a better sense of where you stand with your doctor on that particular topic. If you just begin the conversation in that way, it’s an acknowledgment that the doctor has that much more experience with something than you do, but you still have information to discuss with your doctor.

Note: Torrey blogged on About.com about the topic of doctors and the Internet. Go to http://bit.ly/fdLRHv to read that blog post. She also wrote about her definition of “em-patient,” which you can at http://bit.ly/ejSpwf. Hear her interview with Joyce at powerfulpatient.org.

As printed in the VHL Family Forum 19:2, April/May 2011. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.