Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.

In these podcasts, you get to listen in on my conversations with some truly remarkable people. You will hear what health literacy is, why it matters and ways we call can help improve health understanding.

Today I’m talking with Theresa Brown who describes herself as a nurse-writer. Theresa not only is a hospital staff nurse but also writes a monthly opinion column forThe New York Times called “Bedside.”

In this column she focuses on health care policy and the importance of nursing to quality care. Theresa also writes for numerous blogs and magazines. She’s the author of the terrific text Critical Care:  A New Nurse Faces Death, Life and Everything in Between.”

Theresa and I met while attending an NIH (National Institute for Health) program for journalists called “Medicine in the Media.” Given our shared interests in health care and journalism, it’s no surprise we enjoyed getting to know one another.

Now I’m delighted to introduce Theresa to you. Welcome to Health Literacy Out Loud.

Theresa: Thank you.

Helen: Theresa, your career has taken some of the most interesting twists and turns along the way. How did you get started both as a nurse and as a writer?

Theresa: I love to talk about it because I have a Ph.D. in English from the University of Chicago and taught at Tufts University. I had a slow falling away from academia.

At the same time, I became a mom and discovered this whole other part of my life that was interested in caring for people in a very hands-on physical way. It’s what I call the soup of life.

Helen: You didn’t start as a nurse. I’m an OT. I started right from college on. Your nursing is really one of those mid-career moves right?

Theresa: Yes, exactly.

Helen: You became a nurse and have been a nurse now for a while now.

Theresa: I’ve been a nurse over five years. Then, really by chance, I had a very bad experience at work and decided to write it down.

Helen: You’re talking as a nurse now? You were this Ph.D. in English teaching college students. Now you’re a nurse and you have a bad experience.

Theresa: Right. I wrote it down and thought, “This is good. I want to see if I can get it published somewhere.” I was lucky enough to have it land in The New York Times.

Helen: Whoa. A lot of us have a bad day, but we don’t all end up in The New York Times. Can you tell us a little more about that? That seems like more than just a little baby step.

Theresa: I sent it to the magazine because I’d always wanted to be in The New York Times. I never heard from them again, but I also have an editor friend. I sent it to him and said, “If you think this is any good, can you put in a word for me?” He said, “I don’t know anybody at the magazine, but I really like this.” Then I sent it to “The Science Times.”

Helen: That is what comes out on Tuesdays.

Theresa: Right. Then they said, “We want this.” It was great. It took about six months for the piece to actually get into print. I was worried. All my friends thought I had imagined that I was actually going to be in The New York Times. Then it came out.

They had sent out a photographer, put it on the front of the section and made a big deal out of it. From that I got the book contract for the book that became Critical Care.

Helen: I’m thinking maybe our listeners want to write too. Can we all just write something, have a friend, and get it published on the front page of the paper we want to see it in? Or are there steps along the way for the rest of us?

That’s what I want to talk about with you for Health Literacy Out Loud. How can people really get in the major media using whatever talents and skillsets that they have? You’re an English major. Did you know how to write, or is that a skillset you had to learn?

Theresa: I knew how to write. Even in English graduate school people thought I was a very good writer.

Helen: Did you think you were a good writer?

Theresa: Yes.

Helen: That’s a skillset you had.

Theresa: Right, but it wasn’t something I had pursued in a professional way. For your listeners, here’s the truth. I am a good writer, but I was also a voice that people did not usually hear. That’s what I heard over and over again after this column came out in The New York Times from agents and editors. They said, “This is the voice we never hear, the voice of a bedside nurse.”

Helen: That’s what I think about for people interested in health literacy as our listeners are. We have a voice that doesn’t get heard a lot. I think for a lot of people that feels like this huge boulder in the way.

This isn’t what they usually publish. So why would they publish me? Somehow that became a plus for what you’re doing because your voice is distinctive.

Theresa: Yes. It was a combination of who I was and what I had to say and then that I had an ability to say it, if I can say that without sounding arrogant.

I realize that the irony is when you’re writing or talking about health literacy, you’re talking about people’s difficulty understanding. That inherently seems hard to translate into writing. It might actually be a hard thing to write about even though you’ve done it successfully.

Helen: Maybe that’s why you and I resonated with each other. I’ve been published in some magazines too. For listeners who may not know, I wrote a column for a magazine published by The Boston Globe. I did that for 10 years until the magazine folded. I didn’t start life as a writer either. I started as an occupational therapist.

I don’t think I had that whole writing skillset that you had, but I wrote great memos. I think my memos were better than others I knew at the hospital. That was the extent of my writing experience.

An opportunity kind of came to me. I wasn’t even really looking for it. Your experience sounds like it kind of happened that way too. We both made it but in different ways.

What I wanted to let our listeners know is that there are opportunities out there even though no one else may have gone down that path before.

Theresa: That is very important. Just because a story isn’t written about or doesn’t get popular media attention doesn’t mean people aren’t interested in it. It may just mean that those venues aren’t aware of it or they haven’t thought of it.

You could really be offering the mainstream media something by saying, “Here’s this story about health literacy.” I can tell you that, as a nurse, when I first learned about health literacy, it blew me away.

Helen: Really?

Theresa: Yes. I had never thought about the fact that you may have patients who are illiterate, but they’re not going to tell you that. They’re going to pretend that they can read.

What’s the educational level for the average handout that we give to patients? A lot of them are pitched at a reading level that’s way too high for the average person. I had really not thought about that. Several of my family went to college. I just wasn’t thinking about it, so I was so glad to learn that.

Helen: When we as advocates in health literacy talk about communicating our message, we often think that the way to do that is on these professional channels.

In the journals, professional publications and academic programs I don’t think people are thinking about the lay common press as The New York Times or other local newspapers or magazines. That’s the path that you and I have taken in addition to the professional press.

I’d love to hear from you some lessons learned and recommendations you have for those who might be interested in getting their views out to the whole world, not just the professional world.

Theresa: I’m glad you drew that distinction between the whole world and the professional world because that’s really where the translating has to come in. The way I think of it is that I have to find a hook for the general public.

The best example I can give of this is when I wrote about staffing and how if you don’t have enough nurses per patient, data shows that patient mortality actually goes up. People die who wouldn’t have otherwise.

When I was getting ready to write this column, I said to the author of this research, “People don’t care about nurses’ working conditions. They do care if they’re going to go to the hospital and die when they wouldn’t have otherwise.”

Helen: You switched that because if you were writing for nurses, you’d talk about staffing ratios or something, but now that you’re writing for the general public it’s all about the patient.

Theresa: Right. It was still about staffing ratios, but it was from the perspective of the person who’s getting the care. I hate to say the healthcare consumer because I hate that framework, but it’s from the perspective of the person who’s getting the care.

In health literacy, you’re translating what’s said professionally. Is there someone’s grandparent who doesn’t understand what’s going on? There’s a whole cadre of people who most likely are in some way disenfranchised by our system and can’t understand the language of it.

Helen: What you’re telling me and what I’ve read in your book is that it’s all about the story. You have many chapters in your book, including ones about death and chemotherapy. You are writing about very hard situations.

There’s always a person there. Yes, you’ve masked the person’s identity and say ahead of time that you’re doing that, but it becomes one person’s story that you’re giving a greater message about. Is that more or less the style that you use?

Theresa: Yes. That can have a lot more resonance than throwing out a bunch of statistics. You and I talked about this, Helen. A lot of people’s eyes glaze over when they see numbers.

Helen: Mine do.

Theresa: If you can tell one person’s story, then you can pull in some statistics to flush out those details, but keep using that person’s story to bring those numbers to life.

Helen: When we’re talking about the story, I wonder if you could share with our listeners what you do to protect confidentiality because that’s an issue for everybody. We know we can’t violate that. How do you go about doing that?

Theresa: Actually, if you’re observing HIPAA, the laws about confidentiality, it’s pretty easy once you know those rules. You can’t give any identifiers like names, exact diagnoses, addresses or social security numbers. It’s just really common sense once you look at it.

The bigger question for me is the ethics of telling patients’ stories. Since I’m a nurse, I’m not always able to follow up with people. Unlike physicians, we don’t have clinic hours with them or access to their home address and phone numbers.

Helen: Your story suggests a little piece in time. It’s just your encounter, but what would be an ethical challenge you have in there? What have you struggled with?

Theresa: In general, how would someone feel, especially in a very hard situation, about having such a difficult moment of their life written about?

When I’ve been able to, I have asked the people in advance, but I can also tell you that there are some people who found out afterward. They’ve all actually been very touched.

My sense is that patients and family members are really glad to know that what happened to them really mean something and can mean something out in the wider world. It’s not just their individual suffering.

It’s a part of the narrative of all our lives if something happened to them that can be useful for educating other people about how healthcare works or how we understand life and death.

Helen: Can you give us an example of how you might ask somebody ahead of time or tell them after the fact? I’m not sure I can come up with that wording.

Theresa: Yes. I wrote about the risk of stem cell transplant with one patient who was actually not doing well. I had gotten to know him and his wife. They knew I was a writer. I don’t know if someone told them or if they found it out. I said, “I’d really like to write about Craig.” They liked that idea. This is when I was writing for the “Well” blog.

Helen: That’s in The New York Times.

Theresa: Yes. They read it. We talked about it. They liked it. Tragically, he died fairly soon after that. What was really touching was my editor at the “Well” blog, Tara Parker-Pope, said, “Do you want to write an obituary column for him?” His wife had given me permission. That was really beautiful. It meant so much to his family.

The sad thing was that a lot of people in the online comments started attacking me for violating HIPAA.

Helen: Let’s talk about those comments and getting feedback. You talked about the beautiful part where the family felt honored that you were a part of it. All went well.

To put this a little further, you’re writing a blog. That is different than just writing something in print. A blog usually has that option for comments.

Now you put something there, but you’re open to the whole wide world and whatever they feel like telling you about your writing and your story. What’s that experience like?

Theresa: The first several times I was very surprised at how astonishingly negative people can be. I wasn’t really prepared for that, which probably says something about me being naïve.

If you look at comments on all things online, often people are astonishingly negative, so there was no real reason for me to be surprised. It took me aback and took some getting used to. I had to learn not to take things personally.

That was definitely a challenge, but the upside of it was that in general I got many more positive comments than negative ones. I learned so much from my readers. People would write in the most beautiful stories, funny stories and tragic stories.

Helen: You were really creating a dialogue in ways.

Theresa: Yes. A column that I wrote was about how one weekend two different patients asked me to shave their heads because their hair was falling out from chemo. They just wanted their hair gone. I wrote about that.

The comments were fascinating. They were about cancer patients who also decided to shave their heads. Some of them had big parties when they shaved their head. For some of them it was very private and really sad. There were women who loved being bald. There was a whole world of thoughts about hair with chemo that I never even knew existed.

Helen: That’s a wonderful story. It seems to really speak to what we started talking about in the beginning, which was the difference between writing in a professional publication where you might write about the physiology of losing your hair, and really engaging with people for whom this is a part of their life. That’s a very different way. It sounds like a huge benefit. Also, it’s a risk you take of writing for the public. You’re just out there.

I want to ask a couple of other questions because I get these questions too as a writer. How do you choose your topics?

Theresa: That is actually not usually a problem for me. I always have about 10 different ideas spinning around in my head like a Ferris wheel. The challenge then is to pick the one that’s really going to work.

Now that I’m writing opinion columns, it’s making sure I have a good hook, like with the staffing issue and talking about patient mortality. Then can I bring together all the different pieces that I want to bring together?

My most recent column was about looking at the presidential elections coming up and if we re-elect President Obama, will he continue with ObamaCare? If we elect Romney, we’ll have this market model. I wrote the column around the phase “skin in the game.”

That’s the business school idea that if people are paying for things, they have more ownership of it. Then they spend their money more wisely. I was arguing and saying, “This completely does not apply in healthcare because the skin in the game is your own skin.”

Helen: It’s literally your own skin.

Theresa: Yes. The way that people think about costs when it’s their own life, heart, skin and bones is not the way they think about spending money when they’re buying a car.

Helen: You take this great big abstract concept in ways that really personalizes it.

Theresa: Right.

Helen: That’s interesting how you pick your topics. I know I do the same. I have a very long list of podcast topics I might want to cover, but then I’m thinking, “What would resonate with the listeners?”

In fact, in talking with you about a somewhat different direction than I usually take. I thought, “I find that interesting. I’m thinking that listeners might want be interested, too. There must be some out there who want to communicate their message to a very big audience.”

I know it’s taking a risk in choosing topics.

Theresa: Right, but there are also times when I will have a story in my mind and don’t have the hook yet. Then a year later suddenly it will come together because of some change in legislation, an article I’ve read or I’ve read about something similar. Something clicks in my head.

I would tell people that if they feel like there’s a great story they want to tell but just can’t think of how they want to tell it, let it come.

Helen: It might take time a while to percolate.

Theresa: That might just also be how I work, but with stories like this about healthcare in the real world, sometimes they do need them to simmer on the back burner a little bit. What is the most important thing you want to convey comes to the surface. Then you know how to write about that issue.

Helen: I find that I come into certain writing rhythms. There may be a period I can write a lot of articles or tips or create podcasts in a chunk because I’m really thinking that way. Then I’ll go a little while and it won’t come as quickly.

Theresa: Right. People need to have patience with themselves and their efforts to write. You can start by trying to get a column in a local newspaper, writing letters to the editor or finding some online venue and just seeing how it goes.

Helen: A friend of mine practices by writing book reviews for one of the online booksellers. That’s the way she keeps up with her own writing skills. She’s a fabulous writer. I just thought that was an interesting exercise that she does.

Theresa: That’s a great idea.

Helen: Before we go, I want to ask about that process of getting published. Also, if you want to give us some links or titles, we will have them on the website.

Could you just let listeners know some ways they can be reading your writing and also reading about the art of getting published?

Theresa: The link right now would be if you Google “The New York Times, Opinionator” and put in “bedside” or just put in “Theresa Brown New York Times Bedside.” “Bedside” is the name of my column.

People can also go to my website. There’s a way to sign up. I send out an email blast every time I have a column if they’re interested in that. That’s just www.TheresaBrownRN.com. That’s a way to stay connected with me if that’s what they’re looking for.

With publishing, I am willing to admit that I was lucky with that first placement. The rest has been a lot of hard work, but the hard work has definitely paid off. I would tell people don’t get discouraged.

That’s why I say to start by trying your hand at something local or online. I have a friend who is very interested in talking about prescription drug abuse. She started her own blog. Now she’s really taken off with it and is being invited to DC to do this big workshop to talk about addiction to prescription narcotics.

Things can really happen. It’s hard when you’re sitting there by yourself with your laptop writing and thinking, “Who in the world is going to want to read this?” Everyone feels that at times. You may be surprised.

Helen: I loved hearing your story. Thank you so much for sharing it with all of us. I love the way you describe yourself in a hyphen as a nurse-writer. I encourage listeners to do the same,. I know, I’ve done that in my life.

Take your passion and what you really enjoy and feel you have some talent in. Put it together with your professional interests. Even though no one has ever done it before, it can work. Give it a go.

Thank you so much, Theresa, for sharing your story with Health Literacy Out Loud.

Theresa: It was my pleasure. You’re welcome.

Helen: I learned so much from Theresa Brown. I hope that you did too. But health literacy isn’t always easy. For help clearly communicating your health message, please visit my health literacy consulting website at www.HealthLiteracy.com. While you’re there, sign up for the free monthly e-newsletter, “What’s New in Health Literacy Consulting.”

New Health Literacy podcasts come out every few weeks. Subscribe to it for free to hear them all. You can find us on iTunes, Stitcher Radio and the Health Literacy website, www.HealthLiteracyOutLoud.com.

Did you like this podcast? Are you inspired to try something new? If so, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.