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. I also produce and host this podcast series, Health Literacy Out Loud.
Today’s guest is Akila Muthukumar, who graduated summa cum laude from Harvard College with a major in human developmental and regenerative biology and a minor in English.
Akila helped establish and lead a question-listing service at Massachusetts General Hospital in Boston. She also has done a lot of writing, including for the health and medicine website STAT News. Akila hopes to combine these interests as a physician-writer.
This year, she’s living in rural south India, where she is working at a nonprofit organization dedicated to people with intellectual disabilities.
Akila, welcome to Health Literacy Out Loud.
Akila Muthukumar: Hi, Helen. Thank you so much for having me. I’m excited to be here.
Helen Osborne: I am, too. I am a huge fan of STAT News. I get their postings every day. A while ago, this article popped up, “The question list is a simple way to help patients prepare for appointments,” and you are the lead author of that article.
I was cheering you on. I and so many people in health literacy really appreciate the value of asking questions in healthcare appointments. Yet we also have an appreciation for how difficult this can sometimes be.
You’ve been immersed in this work, and not only writing about it but also helping people ask questions. Let’s take it from the beginning. Why is it important for patients to ask questions at medical appointments?
Akila Muthukumar: I’m so happy to hear that you were already a proponent of asking questions. I think a lot of us might implicitly understand that the value of asking questions could be to get the answers we want.
There are so many times that patients with the service that I’m working at will actually share that there are things that they end up forgetting as soon as they walk into the doctor’s office.
Maybe because it’s a stressful period of time. Or maybe it’s a very short amount of time and they can’t get to everything that was in the back of their mind. It really brings those concerns to the forefront.
There’s also additional research showing that it actually reduces your anxiety and makes you feel more confident when you’re approaching a medical appointment, which can translate to a lot of benefit in how you are feeling to advocate for yourself.
Helen Osborne: Wow. Thank you. You talked about why question-asking is hard. I know. We’ve all been patients at some time. Sometimes you feel stressed, overwhelmed or rushed, and then the provider might just say, “You have any questions?” The easiest response is, “No.” You’re thinking, “Get me out of here.”
But it is so important to ask those questions because, as you said, it’s a way to feel much more in control and to have your specific needs, wants and interests addressed.
How do you and your colleagues help patients ask questions?
Akila Muthukumar: That’s a great question, because it might not be immediately clear what a question-listing service means. But essentially, in our model we contact patients prior to their doctor’s appointment. We might be partnering with the clinic in which case we have access to this kind of information.
We make a phone call and, after explaining what the service is, ask whether they would be interested in working with a student intern who will write down all of their questions and then send that document both to the patient and to their doctor, who can review it beforehand.
That’s the other benefit of a question list. It might get both the doctor and the patient on the same page even before they’ve walked into the same room.
The doctor might know what to focus on when otherwise, especially, let’s say, in a specialty like primary care, the conversation could go anywhere. You’re trying to update your doctor about one year’s worth of updates, and they might not know what’s most top of the mind for you.
Helen Osborne: How do you know who to approach? You approach them. You contact them ahead of time, which I like. It’s not like you’re springing it on a person as they’re sitting in the waiting room. How do people respond to you initiating this by saying, “Here, I can help you build a question. Are you interested?” What’s the reaction?
Akila Muthukumar: I think we get mixed reactions. For example, when we’re reaching out to all patients before their appointments, we have a few who, maybe like you, actually are very well versed with health literacy and making these lists, and already do something similar for themselves.
There are others who might just say, “I’m really busy right now and I’ve already filled out some of the questionnaires or surveys,” that Mass General or their doctor is sending to them, so this would feel redundant. In this case, we completely accept that. It’s an optional service offered by Mass General.
For some people, I think it might offer less benefit if also, for example, they have a family member who accompanies them, multiple people who can remember the conversation that they’re having and the questions they need to ask.
We see that it’s most useful when somebody might feel stressed, overwhelmed or be faced with making a major healthcare decision, like perhaps prior to getting a surgery for which they’ve already been sent a decision aid in which they are trying to decide what their priorities are.
We also call these patients and we talk to them about, “You just received this decision aid from us. Was that tool helpful? In addition, we also have a question-listing service. Would you like to take part in that?”
Helen Osborne: Thank you. You couldn’t possibly go to all patients walking in the door at Mass General Hospital. How in the world do you know who to approach? What about issues of privacy and confidentiality?
Akila Muthukumar: We partner with a few specific clinics. For example, Dr. Leigh Simmons’s primary care clinic was one of our initial partner sites, and has continued to be a source of many question-listing calls for our student interns.
She’s very familiar with the program and also serves as the kind of advisor to the work that we’re doing, so she can introduce it to some of her patients as well.
We’re always looking for others who might be interested. We post flyers. We try to reach out on social media. We’ve made some visits, for example, to a senior center and asked directly if this kind of service might be helpful.
Then for your second question, privacy is definitely very crucial. All of our student interns go through training in order to make sure they understand HIPAA and confidentiality.
We save all of our question lists onto a secure drive. We make phone calls through a third-party application, and then we make sure that we’re in a private setting. If I’m taking this call from my dorm room or from my home, it’s super important that no one else is overhearing this information.
Helen Osborne: Thank you. You’ve prepped everybody, the physician knows to expect this, the patient has said yes, and safety and security are taken care of. You talk about this as a question-listing service, so that really means creating a list of the patient’s questions?
Akila Muthukumar: Yes. Exactly.
Helen Osborne: What kinds of questions are those like? You also talked about some documents that patients get before their appointment. You don’t want redundancy. What’s special about your question list? What kinds of questions would be in it?
Akila Muthukumar: First, I think I’d have to credit the original creator of this question-listing program. It originates from the University of California at San Francisco. Jeff Belkora was responsible for compiling a recipe with prompts that we offer so that patients can respond with their questions.
Helen Osborne: I’m going to interrupt you right there. I do want to hear about those, but Jeff Belkora was actually a guest on Health Literacy Out Loud years ago. I’m going to include a link there. His good work was about decision aids, I believe.
He and colleagues have generated some kind of a question list in there? What kinds of questions would be involved?
Akila Muthukumar: They have generated a kind of format to ask questions in order for the patient to reply with their own questions. I know maybe that’s a little confusing.
For example, I might ask something like, “Do you have any questions about interpreting the most recent test results that you received?”
If the patient has already kind of discussed a little bit about a past diagnosis of diabetes frequently in their family, but they’re not sure how to make sense of their blood sugar levels, then I know that the focus question might be something like, “What have you read or heard or do you understand so far about early risk for diabetes? What other questions might come up?”
I try to listen to what they’re saying, and then try to prompt them to think a little bit more about potential areas of confusion they might have.
This ranges all the way from interpreting difficult medical results, to diagnoses that are overwhelming or sudden, to something that is more specific to current symptoms they’re experiencing.
Even for some people, it’s offering, “What are your long-term health goals and priorities?” Many people might not be asked a question like that or not think to bring that up to their doctor proactively, so we try to make sure that in the case that they don’t have any problems they’re facing now, it might still be a great idea to let their doctor know that 10 years down the line, these are the types of things they want to think about.
Helen Osborne: You sent me some of those materials and I found it very interesting the way some of these questions were framed in terms of questions about the past, such as about your diagnoses, things you’ve already gone through, questions about the present, what that appointment is all about, and looking ahead to the future. Those are very interesting ways to categorize questions.
Not minimizing your role, but you’re a student. How do you work with the patients to generate this list? I assume you’re not answering any of those questions. That’s not your role, right?
Akila Muthukumar: You’re exactly right. We definitely cannot answer the questions.
In fact, when we introduce the program to patients, we’re always very clear that we’re still in training, pre-medical students, some medical students, but not practicing physicians or clinicians who are going to provide them answers or medical advice. This is only to list their questions in advance of their appointment. We are careful about that role.
To some degree, I would say that’s almost what makes this so exciting. You don’t need any medical qualifications to list out your questions.
Hopefully that’s kind of reassuring for patients anywhere, even at a hospital that might not have a specific question-listing service like this. You can also sit down and make a list or think about what might be the best way to organize your own concerns.
Helen Osborne: I’m glad you mentioned that, Akila, because our podcast listeners can be health professionals. They can be in public health. They can be students. They can be anywhere in the world. They might be patients and families themselves. We all want to know a little bit more about how to go about doing this. I like that you said that.
For our listeners, wherever they’re working, how can they help others ask questions?
Akila Muthukumar: First, I think it’s great if they’re already listening because they must have some interest or recognize the potential value of question lists.
I think accepting that maybe you want to have a formal process by which you’re going to write down these questions is the first step in order to be able to ask them.
Second, I think it is helpful to brainstorm the questions in a conversation. A lot of the role of the student intern in our service is being a second voice who can help you consider things that maybe you haven’t already noted or jotted down yourself if you were sitting alone.
Talking to a trusted family member or friend might just get more ideas coming in order to, as comprehensively as possible, cover everything.
You mentioned a little bit also how difficult it can be may be to feel confident enough to ask questions. The third thing I think is combating that feeling by recognizing that your doctor might actually appreciate that you’re coming in with an idea of what to discuss, and you might also be helping them.
One of the things that our article did was trace the history of question lists. There used to be a lot of stigma and stereotypes, and maybe still there are some, associated with the notion of a patient who’s overly anxious and has a list.
But I think accepting that it’s actually a patient who’s well-prepared and organized, and who might alleviate some of your doctor’s strain as well, can be a useful mindset shift.
Helen Osborne: I think of that phrase “no question is a stupid question,” for people who might be reluctant question-askers in there.
I also think of cultural issues. Years ago, I was working with my mother as her caregiver. I’d go with her to appointments, and I was encouraging her to ask questions. She said, “Dear, I was brought up that it’s rude to question people in authority. I’m not going to ask any questions.” I just turned to her and I said, “Is it okay if I ask questions on your behalf?” She said, “Of course.”
Do you find that some people just feel it’s not comfortable asking questions for whatever reason?
Akila Muthukumar: That is so interesting. It’s actually not something I’d considered or not something anyone has explicitly shared with me, probably because the nature of a quick phone call might not get to that level of concern.
But I think what you were suggesting to your mother about being somebody else in the room, a trusted person who can ask the questions on their behalf, is great.
I definitely can see all of these concerns. I think they exist across cultural lines, gender lines and just how you were raised for sure.
Helen Osborne: Thanks. Now you’ve met with the patient. How many questions might you come up with together? Would it be two or 20? What’s that product of your time with them?
Akila Muthukumar: It really varies. It’s hard for me to even give you a median number because even one major question might be quite broad about, “What are my possible treatment options?” Then for some people, it can be a lot more specific about, “This part of my body hurts for this amount of time. Will this exercise alleviate that pain?” The number is not also always indicative of the conversation.
It’s ranged for me and the patients that I’ve seen, but the end product is an online document of all of their questions organized in the categories you described perfectly with the past, present and future.
Helen Osborne: You have it online. Can they then print that out and bring that with them to the appointments?
Akila Muthukumar: Exactly. Actually, that’s what we encourage at the end of the call, that they print it out. For some people, bringing it on their phone might be a similar substitute.
We let them know, “We sent this to your doctor, but it would be most useful if you had it in front of you and you were ready to not only have the list, but actually ask the questions and make sure that you were going to act on them during the appointment.”
Helen Osborne: That’s neat. I assume that you get the patient’s okay before you send a copy of this to the provider, too, ahead of the appointment. Correct?
Akila Muthukumar: Yes, absolutely. For everything, we ask for permission and try to explain the service as clearly as possible. If any steps are confusing, we definitely respect whatever the patient wishes.
Even if they finish the question listing and don’t necessarily want to proceed to take it with them or don’t want their doctor to have it, that would also be understandable.
Helen Osborne: Before I knew there was a more formalized structure for what you’re doing, I know the value of questions in my own life. I have my own quirky way of coming up with questions, and my own quirky way of writing down the answers in the moment.
I’ve also helped other people ask their questions. I never had a formalized process like what you are going through to help people ask questions.
But whether it’s family members or friends and just conversations, I know they’re going through some big deal medically. I talk about my own experience asking questions and the value, and I say, “Do you have questions you want to ask?” They say, “Of course,” but they’re all over the place. They might think of their questions at 3:00 in the morning or in some random way, not well organized.
Sometimes I say, “Do you want to kind of talk through these together?” and I help them do that.
But that’s why that structure of what you’re going through now, what you’re going to have to deal with in this appointment and ahead can really help.
People have said that they really value that, so it can be done in a less formal structure than the way you’re doing it as family members and friends.
Akila Muthukumar: I absolutely agree. It’s so wonderful to hear about how you have come upon this process and used your understanding of how crucial question lists are to support others.
You identified a really big challenge that we also hear of, where patients come up with questions at random moments and places. Having a set period of time in which they’re asked to focus and write them down can be very effective.
Otherwise, one might be jotted in a notebook that’s on their desk inside their room, and another is on their laptop that they quickly realize is at work. You’re really trying to consolidate all of that in one place.
I completely agree that it can be done informally as well without anything as structured as this program.
Helen Osborne: I know what I do in my own life, especially if something is particularly anxiety-provoking or scary. I’m waking up in the middle of the night with these random questions and worries. What I do on my own, because I want to prepare for my appointment, is I jot them down.
You said they can be all over the place, but I’ll get them however I wrote them down, wherever I put them, and I’ll put them together ahead of my appointment. I will try to then organize it.
I tend to use, and I always talk about this, an index card. I put my questions on there, with a little space between questions. Then I bring that list of questions that have been whittled down and somewhat organized to my appointments.
I also attach a pen. This is what I’m carrying to my appointment. The reason I bring a pen also is so I can write down the answer. If it’s a really big deal medical appointment, I don’t want to have to be responsible for remembering all of that. I jot that down, too.
That’s my tool, and then when I come home again, I staple that to a piece of paper and I write longer explanations. Yes, question-asking is a big part of my life.
Let’s just talk about the benefits to this. It sounds like there are a lot of people involved in this process. You have the patients or their family members, you have the healthcare providers and you have you and your colleagues as students. What are the benefits to this process to all of you?
Akila Muthukumar: That’s a wonderful question. I think the uniqueness definitely comes from how there are benefits to all three parties involved.
First, and as we’ve been discussing throughout this podcast, with the patients, they hopefully have the end result of feeling like their questions are going to get answered, a little bit of reduced anxiety, more confidence and better channel of communication with their physician.
Similarly for their physician, hopefully it’s a chance to know what their patient is thinking about in advance and a better channel of communication in order to have a really productive, understanding conversation when they’re in the office together.
Then for the students, I think this is truly very unique, because any time you are aspiring to go into a medical profession, you want to gain as much exposure in a clinical setting as possible to know what your work of working with patients would look like.
A lot of our students who apply to the program express that they’re really looking forward to forming those connections and hopefully helping people in pretty vulnerable moments of their life feel comfortable letting a student into what some of those concerns might be and thinking about how to organize that.
I think, along the way, you also end up just learning a lot about medicine and different fields. When we are partnering with more specialty clinics, I know that I just expanded my medical vocabulary or feel like I’m just getting to hear things that I otherwise would not have.
Helen Osborne: Thank you, Akila. I’ve got one question for you before we wind this up. What is the most surprising thing you have learned about helping people ask questions?
Akila Muthukumar: I think, for me, maybe it’s been seeing how even the simplest of appointments or just a regular check-up with your primary care doctor that always happens once a year can actually be a fruitful moment to share a lot more about your life.
Even for someone who’s generally pretty healthy or doesn’t have a huge update, when I probe a little bit further about what they might want their doctor to know, there are always things.
Maybe it’s a life update you want to share with your doctor, something about your social network that’s changed or something about how you really hope to stay active and healthy in the coming year because it’s such a big relief for you to play sports every day after work.
These things are so wonderful. I feel like I just get to learn things about people’s lives and then also see a way for them to share that with their doctor. That’s been great for me.
Helen Osborne: Thank you. I love how you frame the questions and I love your answer to that, too.
Akila, thank you so much for being a guest on Health Literacy Out Loud and for adding more support and structure sometimes to helping people ask questions, be their own advocate and tailor information to their needs. That’s what health literacy is all about. Thank you, thank you, thank you, Akila.
Akila Muthukumar: Thank you for having me. It sounds like you’re already such a wonderful proponent of question lists and have been throughout your life, and supported others on the process, too. That’s so wonderful to hear.
Helen Osborne: As we just heard from Akila Muthukumar, it is so important for people to ask questions at medical appointments. But that can be really hard to do.
I am so grateful that she talked about a system for helping others to do that, as we might have already figured out on our own, or ways we can put that into whatever our work is. That’s part of health literacy. But health literacy and communicating clearly can be hard to do.
For help clearly communicating your health message, please take a look at my book, Health Literacy from A to Z. Feel free to also explore my website, www.HealthLiteracy.com, or contact me directly at firstname.lastname@example.org.
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Until next time, I’m Helen Osborne.