HLOL Podcast Transcripts

Health Literacy

When Patient’s Create Their Own Medical Binders: A Powerful Way to Get Organized and Feel More in Control (HLOL #190)

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. I also produce and host this podcast series, Health Literacy Out Loud.

Today, I’m talking with Bridget Gaglio, who is a Senior Program Officer for the Clinical Effectiveness and Decision Science program at PCORI, or Patient-Centered Outcomes Research Institute, that’s based in Washington, D.C.

Bridget works there to improve communication and dissemination of evidence-based information among patients and their healthcare providers.

She has published papers on patient-centered communication, health literacy, and dissemination and implementation of health interventions.

While Bridget and I know each other through PCORI, this podcast is not about that. Rather, we’ll be talking about experiences each of us faced as patients. For Bridget, this was because of an accident. For me, a scary diagnosis.

Happily, we’re both feeling fine and doing well, but our lessons have lasted a lifetime. That’s what we want to focus on now.

Welcome to Health Literacy Out Loud, Bridget.

Bridget Gaglio: Hi, Helen. Thank you so much for having me.

Helen Osborne: We’re talking about being patients. It can happen in a moment. My diagnosis came out of the blue. I wasn’t expecting it. You were in an accident. Would you share a little bit about that just to put it in context for all of us?

Bridget Gaglio: Sure. It definitely happened out of the clear blue. I was doing my normal commute to work, which is either catching the Metro or the bus since I live in Washington, D.C. I was crossing the street in the crosswalk, and a car was turning. They didn’t see me and they hit me.

Helen Osborne: I saw you months afterwards and you were still reeling from it.

Bridget Gaglio: Yes.

Helen Osborne: It wasn’t just a little “oh my goodness, that was a bad thing that happened today.” You were really injured, right?

Bridget Gaglio: Yes, I was very injured. It took several months and a lot of doctors’ appointments to recover.

Helen Osborne: You are feeling well now, right?

Bridget Gaglio: Yes, I am. Thank you.

Helen Osborne: Good.

This happens in a moment. We’re not planning for it. You and I are on PCORI. We know what we’re doing. We’re both somehow involved with health communication. When we were talking one day about these experiences as patients, I think we shared that it was hard for us, too, and we have many advantages. We can read and do numbers. We know the healthcare system.

Are you wiling to share a little bit about what was so hard about being a patient? That’s in addition to the pain and misery you were going through.

Bridget Gaglio: It is overwhelming when you’re feeling very vulnerable and not well, and then all of a sudden, especially for someone like me who has never been a high utilizer of the healthcare system, having multiple doctors’ appointments every week and having to keep track of not only the appointments but the information I was being told when I wasn’t feeling well, and keeping track of what I had done and what the results were.

It was just a lot, especially when you’re not used to having to deal with all of that.

Helen Osborne: You figured it out, I guess.

Bridget Gaglio: I did.

Helen Osborne: I figured it out, too. I’ll just share with listeners. I don’t want to leave you out there. I’m fine. Years ago, I just went for a routine mammogram that didn’t turn out to be quite so routine. That led me down a whole path of treatment and intervention.

My story is that I also, like you, got overwhelmed with a flood of information coming at me that I was not expecting. I couldn’t keep it all straight. It was all I could do to have the courage to show up for appointments.

Before this, I had often given talks to consumers about communicating clearly with healthcare providers. I’d tell people to keep your own records.

Now my friends were telling me, when I was saying, “This is overwhelming. I can’t even find my patient card to get a discount at parking,” “Aren’t you the one that tells other people to keep their records? Why don’t you do it?” So I did.

Bridget, your story is you were overwhelmed. You’re in pain. They’re throwing information at you. You were super healthy, young and dynamic before that car hit you. What did you do to figure this out?

Bridget Gaglio: In the beginning, I would take everything I got, like receipts, results or whatever, and just started piling them on my dining room table. I just was in denial. In the early stages, I was still in denial that this had happened to me and I was having to deal with all of this.

Then like you, one day, I said, “I have to make sense of this. This is my responsibility. I have to take control of this situation. Even though what happened to me was out of my control, I need to take control now.”

Like you, I’ve written on health literacy and patient and provider interactions. I said, “What would I tell other people to do? Get organized.”

Helen Osborne: We’re so good at telling other people what to do.

Bridget Gaglio: Exactly.

I went out to the office supply store and bought a binder, a lot of tabs and a hole-puncher. I went home and started organizing everything into piles.

Before I started putting it into the binder, I thought, “I lose things, so to make sure if I do lose this, I’m going to scan everything in as well.”

Helen Osborne: Interesting.

Bridget Gaglio: Also, if a doctor needed something, I could quickly just attach it in an email and respond instead of trying to figure out how to get it to them.

I scanned everything into my computer, and then I organized it all in this binder. Then every time I went to the doctor, I took the binder with me and just added to it as treatment continued.

Helen Osborne: That’s really interesting. I did the binders, too. As we’re recording this, I took out my binders. Now I have three. One was when I was diagnosed. That one was just filled up with all that stuff I was going through then. I also did tabs.

I’ll talk more as we go through this. Maybe we can share what kinds of information we put in our notebooks.

Since that one got pretty full, I bought another. Mine aren’t huge. That took me for the next few years as I’m dealing with some other stuff, but not at that intense level.

Now I have a more recent one. Happily, I’m just having routine checkups periodically, and I still find a binder helpful. Partly it’s because now I may not see a doctor for a year or two. There’s really no continuity in my mind. I can look up the notes from last year and see what we did then so I can keep up to date.

Also, when I went through my episode, I didn’t even consider scanning anything in or doing it electronically. I don’t know if it’s because yours was 10 or 15 years more recent, who you are or what it is, but I think that is an astoundingly wonderful idea to scan in your stuff, too.

Bridget Gaglio: Thank you. I think it probably has a lot to do with having the ability to email back and forth with providers now. I think if this had been very early on where the patient portals didn’t exist, I don’t know that I would have thought to scan it in.

Also, just personally, I’ve gone to a paperless household, so I’m used to scanning everything in now when it comes in, just to minimize the amount of paper in the house.

Helen Osborne: Interesting. It’s really neat for me to hear how we, a decade later, have updated this. Emailing my doctors was not even an option in my day. But that’s history.

What are you doing? What can our listeners learn? Our listeners, I’ll tell you about them, Bridget. We all care about health communication, whatever our jobs and responsibilities, but we also are people. Chances are, we’re going to be patients at some point, or our loved ones or people we care about are going to be patients.

What are your lessons learned you’d love to pass on that people can maybe put into place in their life, either as professionals or as people?

Bridget Gaglio: I think a couple things. One is while going to a lot of visits and keeping track of all the information might feel overwhelming in the beginning, I think it also gives you a sense of being empowered.

You are the person with all the information, and so to go into those visits with all of the information and to be able to share it with whomever asks you for whatever results, what you’ve had done or what you haven’t had done, I just think it’s very empowering to be able to go in and say, “While I still am not 100%, I still have all the information.”

Sometimes you just hand the binder over.

Helen Osborne: Really?

Bridget Gaglio: You just are not feeling well enough and you can hand the binder over and say, “Look under that tab. It’s in there somewhere.”

Other times when you’re feeling better, you can just say, “Here are the results.” You pull it out and hand it over to the doctor.

I really feel like, unfortunately, with the way our healthcare system is structured, the patient is the responsible party for keeping all of the information straight. While it’s empowering, I think it’s also one of the most important things you can do for yourself and for your health.

Helen Osborne: How did your providers respond if you just said, “Here’s my binder”? Did anyone push back, like, “Why are you keeping records? I’m keeping records”?

Bridget Gaglio: No. I actually didn’t have any pushback at all, I think because the doctors I was seeing knew that I was seeing a number of doctors and that I was being asked a lot of questions.

There were days when I really didn’t feel well, so I would just flip the tab to the section they needed and say, “Here’s my binder. The results are in this section,” and they would look through it.

I think they were really receptive to it and appreciative that I at least was taking the time to bring all of this information with me to try to have them help me make heads and tails of what needed to be done and when.

Helen Osborne: That’s great.

I had an experience where I went for some very early morning procedure, and I had my binder with me, too. My husband was sitting in the waiting room.

I don’t know if there was miscommunication. My paperwork or the referral did not get faxed over to the person doing that procedure that morning. If they didn’t do that procedure, then I couldn’t have that bigger thing that was going to happen afterwards.

The whole day, the whole experience, was going to be screwed up. I said, “No worries. Go ask my husband. He’s sitting in the waiting room. He has the binder.” They found it. I had tabs, too. They looked for it, there was my copy of the referral form and everything went on as planned.

Bridget Gaglio: That’s fantastic.

Helen Osborne: The doctor, I remember, said to me, “I wish everybody would do this. I’m a quilter. I have a binder of organizing all my craft information. Why don’t people do this for their health information?” It’s a story that’s stuck with me for years.

Bridget Gaglio: That’s fantastic. Otherwise, you would have had to have everything rescheduled. Who knows how long that would have taken?

Helen Osborne: It would have screwed me up. I was ready. I didn’t want this thing to happen, but it better happen and get it over with. Also, it would have hurt the healthcare system because they saved whatever slot they did for me to have this thing happen.

You and I, Bridget, acknowledge and go into this with a lot of advantages, like our knowledge about healthcare, our savvy about it and already a sense that this is our right to be empowered and control this information. What tips would you give for others who maybe don’t feel as confident doing this?

Bridget Gaglio: That’s a great question. One of the things I would definitely recommend is to bring somebody with you. I didn’t do that with all of my appointments, but in the early stages when my father was here, I brought my dad.

Beforehand, I told my dad, “If I forget to ask this question, make sure to ask it for me. Feel free to jump in if you have something to add.”

I felt like that took the responsibility off of me to where I could just go and get the care. Someone else would be responsible for getting the information and making sure I had it.

I think if folks are not feeling as confident, bring a friend or family member who will have no problem asking the doctor any questions on your behalf so that you can share that responsibility with someone so you don’t have to feel like it’s all on you.

Helen Osborne: Actually, I just had the experience this week. We have a relative who’s quite ill. I was with her as she was having a second appointment.

We talked ahead of time about how my job would be to take notes, and if I think of anything to ask that she hadn’t asked, to speak up. This freed up our relative to be so fully engaged in that important medical conversation. She didn’t have to worry about it.

Then I came home, I typed up my notes and sent it to her, which I knew then she was going to send out to others.

The role of that extra person is key.

Bridget Gaglio: I’ve even instilled that with my parents, because they’re older and go to a lot of visits. They have a notebook, and every time they go to the doctor, they both go. Whoever is not being seen takes notes in the notebook. They have a running record for both of them.

Then if I know that they’ve had a doctor’s appointment that week, when I FaceTime with them on the weekend, I say, “Get the notebook. Tell me what was covered in the visit.” They go get it and they share with me what the visit was about.

Helen Osborne: What a powerful tool there.

What can providers do? We’ve got clinicians, public health folks and all kinds of listeners here. What can they do to encourage their patients and loved ones to do something like you and I did each in our way? You and I had no idea we had this in common until we chatted about it coincidentally. What do you encourage professionals to do to help this out?

Bridget Gaglio: That’s a great question. I think the after-visit summary that a lot of providers are starting to give patients is helpful. But I think instead of the nurse or the staff just handing it to the patient as they’re walking out, it would be more meaningful for the provider to sit down with the patient, go through it and say, “Remember, this is what we did today. This is why we did it,” so that it sticks with them.

Also, the provider can say, “Next time you come, I’m going to see you next week, make sure you bring X, Y and Z. I’d like to look at that so we can decide what we’re going to do going forward.” It’s something along those lines, just to keep that conversation open and going with the patient.

Helen Osborne: I really like that. I did a podcast once on after-visit summaries. I know my experience. You’re walking out and the person at registration or something just gives you a piece of paper. There’s no reviewing it. The conversation ended when the physician left the office.

Bridget Gaglio: There are so many times I just take it, I stuff it in my bag and then I might look at it that night or the next day just to see, “Yes, that looks like what happened.” I have no connection with it.

Helen Osborne: Something I would like people who could help spread the word, and I hope that all our listeners do that, is whatever situation you’re in, create your own binder.

Look at the power of this yourselves. Bridget and I came to it in our own way. It just happened. If you’re in a professional situation, you might encourage others to keep their own binder out there.

A couple things about the binder. I also just go to my local little office supply store and I pick out my favorite color. Why not? It’s my binder.

The other thing that I put in it aside from the tabs and all that good information is a zippered pouch. I think it might have cost me a dollar. In that zippered pouch, I put in my appointment slips and my patient ID cards, and I keep a pen in there.

The reason that pen is so important to me is if I’m alone in an appointment, I don’t want to have to remember it all. I probably brought in a list of my questions, but if you look around a doctor’s office, there’s probably not a good pen around. I didn’t want to go fumbling looking for one, so all I have to do is open the zippered pouch and it’s there. That really helps a lot.

Bridget, you are terrific. Neither one of us asked for these situations in which we learned these lessons. But the fact that we are sharing them, I really find this very moving.

I’m just curious. What color is your notebook?

Bridget Gaglio: That’s a great question. My notebook is white, which is not my favorite color. Every bag I have is black, so I just thought a color I could easily see in my huge bag I carry around with me. All the tabs are very bright and colorful.

Helen Osborne: That’s neat. We need a dose of whimsy, so my binders are these funky, bright colors. Probably the tabs are more ordinary. But they have meaning for me.

I went back to buy a new notebook and I forgot and bought the same color I had a few years ago. I keep liking that color.

Whatever we do, and I loved the way you phrased it, this is a way to stay in control and stay empowered. Indeed, patients need to be the experts on being patients.

Bridget, I’m so glad you’re well. I also want to thank you so much for sharing some of your experiences and lessons learned with listeners of Health Literacy Out Loud.

Bridget Gaglio: Thank you, Helen. I really appreciated this, and I appreciate all your support while I was healing. I’m glad you’re well, too.

Helen Osborne: Let’s keep going.

Bridget Gaglio: Yes.

Helen Osborne: Thanks, Bridget.

As we just heard from Bridget Gaglio, it’s important for patients to take care of their own information, too. But whether as providers or patients, health communication is not always easy.

For help clearly communicating your health message, take a look at my book, Health Literacy from A to Z. For this content, you might want to especially look at Chapter 5 that has much more information about communicating when patients feel scared, sick and overwhelmed.

You can also contact me directly at helen@healthliteracy.com.

Health Literacy Out Loudpodcasts come out every few weeks. You can get all the episodes automatically by subscribing for free at www.HealthLiteracyOutLoud.com, or find us on iTunes, Google Play, Stitcher Radio or wherever else you get podcasts.

Please help spread the word about health literacy and Health Literacy Out Loud. Together, let’s tell the whole world why health literacy matters.

Until next time, I’m Helen Osborne.

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