Lecture: Communication with Patients and Families

This live webinar discusses strategies and skills for communication with ophthalmic patients and their families or care givers, focusing on typical Orbis patient populations.

Lecturer: Kenneth Youngstein, owner of Biocom Ltd, which provides communication services to pharma companies, medical schools, governmental agencies and NGO’s.


(To translate please select your language to the right of this page)

KENNETH: Greetings, everyone. I’m Kenneth Youngstein, speaking in Zurich, Switzerland, my home. We have a lot to cover, so I would like to go straight into the program. The first thing I’d like to talk about is: Basically, who am I? I think the important part starts around here. And that is that by training I’m a psychologist and a neuroscientist, and back in 1976, I was hired by the New York Regional Transplant Program, which was one of the first organ transplant blanks in the world, and they were organized to collect organs for transplantation. And my project as a neuroscientist was to work on the concept of brain death, an essential concept in the subject of transplantation. At this time in the mid-1970s, brain death was a very new concept. So my job was to work with the medical community to help them understand what was brain death. And very quickly I began to see that the problem wasn’t just a medical problem. It was also a legal problem. There were no laws that recognized that brain death was an equivalent diagnosis of death. And there were ethical and religious issues. So pretty soon I was working not just on brain death but on all the complex issues surrounding transplantation. And the more I worked in this field, the more I had the opportunity to meet patients, and I began to understand that these patients were receiving very little in the way of any kind of information from their transplant programs. When I asked surgeons: What are you doing about educating your patients? The answer is: I just gave him a new heart. What else does he need to know? Patients take all their medications and everything is fine in their lives. And then I realized what I wanted to do for the rest of my life, which was to do professional and patient education in the field of medicine. In 1979, I set up my own company, Biocom, and began working with many different people around the world, from New York to Beijing, the Middle East, Europe, India, Africa, and that’s what I’ve been doing. In 1992, I moved from New York City to Zurich, Switzerland, and I’ve been here ever since. I began volunteer work with Orbis, first in Africa and later in India. In Africa, I developed a package called an educational tool kit. This was print materials, a library of video clips, 52 video clips on all different aspects relating to eyecare, an image bank, which consisted of original illustrations, where I had top medical illustrators and photographers creating materials that would be owned by Orbis for education, and a series of protocols. What you see on the screen here, this pediatric eye examination guide, was prepared with Orbis and the Health Department of the province of KwaZulu-Natal in Africa. Another project I’ve been doing with Orbis, in collaboration with Room to Read, is the Singing Tree. This is a book for children, and it’s the story of a little girl who thinks that the tree behind her house sings songs to her, because she can’t see the birds. The story progresses from there, and it’s been done in many African languages, as you can see along the top. For South Africa, Zambia, Cameroon in English and French, and last year we began the program in India, starting with seven different languages in India. And this is being simultaneously distributed through Room to Read and also Orbis. We’re about to launch the Nepali version. This is the English version for Nepal. We’re waiting for the translation to come in. So this is what I’ve been working with. I would like to know: Who are you? An ophthalmologist, an MD? A nurse or vision technician? Do you function as a patient counselor? Or do you have some other function within your organization, such as program administration? So if you would, please answer, and submit your response. you have, I think, 20 to 30 seconds to do this. So it turns out that we’re fairly split between ophthalmologists and people who are in administrative functions. So let’s go on to the next page,then. The question is: Where are you? Africa, India, another Asian country in the Pacific? For example, Australia? In the Americas, US or Latin America, or somewhere here in Europe? Okay. We seem to be quite distributed across all different regions. Thank you very much. Okay, so let’s begin. I would like to introduce you to Vera and her daughter Rachel. Now, I met Vera and her daughter in a hospital in northern Zambia, working with Orbis. And this is actually the mother of the child. They look like they could be sisters, but she’s a very young mother. And when Rachel was just a few months old, Vera noticed that she wasn’t following anything put in front of her. She didn’t look at her mother’s face, her hands — she basically was not seeing things. So living in a very remote village, she put her young baby on her back, got on her bicycle, and bicycled several hours to the nearest clinic. When she was at the clinic, they said to her: Look, your daughter has cataracts. So she went back to her village, and one year later, she appeared at the Orbis partner hospital in Kitwe, in Zambia, and you can see at this point the child, Rachel’s, cataracts are extremely advanced. And this was the situation. And so if you look here on the side of Rachel’s face, you’ll see little cuts. And these are typical of what local traditional healers do. They believe it’s a treatment to cure cataracts. So it is obvious that during the time that she did not — this one-year period between the diagnosis and bringing her daughter, she was bringing the daughter to a local healer, to no avail. So she appears at the hospital. And because of the distance that she was from the hospital, and the fact that both cataracts were so advanced at this point, the surgeons decided that they would do both eyes at the same time, which was totally justifiable in these circumstances. So the operation was done, everything went very well, and a few hours later, we went to visit Rachel and her mother, Vera, at the clinic. Look at the expression on the mother’s face. When we walked in, we expected to see her smiling and happy. Instead we found her almost in tears. We said… What is wrong? She said… My child is blind. And we tried to explain to her — no, your child is not blind. All she could see was her child with these two cups over the eyes, and she was totally despondent. Next morning, the bandages came off, the child could see beautifully, and now you can see the expression on the mother’s face. Within a short time after that, Rachel was fitted for her first pair of spectacles, and you can see everything around her, she just grabbed it and held it up to her face and in this very soft voice would go “Hello! Hello!” To everything she could see. Why did I bring up this case? This is a perfect example of when medicine is good, but communication is terrible. If the original clinic had explained to Vera that her daughter’s condition is something that can’t wait, that this is important, that she brings her to the hospital as soon as possible, I have no doubt that Vera would have done this. And at the same time, even at the hospital where they were, nobody said to the mother: When your child comes out of the operation, she will have covers on both eyes, and this is perfectly normal. And that 24 hours after the operation, we’ll remove these covers, and your child will be able to see. If they had done this, she would not have been in the condition that she was convinced that her child was blind. And so I bring this up as an example of poor communication and how it can impact on ophthalmic care. What I’m gonna talk about today is not unique to Africa or India or what we call the developing world. What you see in front of you now is a photograph of the Wilmer Eye Institute at Johns Hopkins University, one of the most advanced eye hospitals in the world. I had the pleasure of shadowing the head of the entire hospital on his rounds. I listened to him talk to his patients and afterwards I would interview the patients and they didn’t have a clue. They had no idea if when they woke up would their eyes be covered or not covered, would they need glasses or not. So these problems of communication are truly universal. So another short quiz. This time I would like to know what role you feel communication plays in health care. So the first one is: Communication is essential in health care. The second is: Communication is nice, but not really essential for good care. Or communication is important, but I just don’t have the time. And last, communication is basically a waste of time, because patients don’t listen, they don’t understand, and they always forget. So please click your point of view, please. Well, I’m not surprised that most of you feel that is important. That’s why you’re on this seminar. But it’s also important — the answer that people have, the 11%, that communication is important, but I don’t have the time. This is very common. So let’s go on. Here your options are basically doctors, nurses, specialized patient counselors, or basically everyone who is on the eyecare team. Okay. That’s pretty much what I would have expected. That’s great. So let’s keep going. First of all, what is communication? It’s got a lot of definitions. The one that I like is the one here, that was proposed in 1960. And it’s that communication is a process in which a person, through the use of signs or symbols, verbally or non-verbally, intentionally conveys meaning to another in order to effect change. And what’s so important is this idea of effecting change. Because if you don’t effect change, then basically you’re just moving data back and forth, and that isn’t the same thing as communication. So I hope that throughout my presentation, we’ll look at this whole issue of doing this, in order to effect change. So why is health care important in communication? Important in health care? Well, for a lot of reasons. It improves the accuracy of diagnosis, improves treatment planning, improves treatment adherence, improves patient safety, it improves treatment outcomes and leads to reduced treatment costs. And what is important is that it improves satisfaction with doctors and patient care. So when I talk about “doctor”, I’m referring to any health care provider. It doesn’t make a difference. I’m gonna use the word “doctor” as a generic here. The important thing to remember is that there is no script. No — oh, here comes a patient with a cataract. I’m gonna pull out my cataract script. Every time you speak to a patient or a family member, you have to think about your individual audience, and tailor communication to meet both the needs and the circumstances of each patient. Now, why have I italicized needs and circumstances? They’re not really the same. Needs are basically — well, this patient needs cataract surgery. But the circumstances could be extremely different, in terms of their educational level, their financial basis, their family support. So each time you look at a need, you must interpret it in terms of… Yes, there’s a need, but each patient has a different circumstance. So I hope this is all clear. If not, we can talk about these differences when we get to the questions and answers. Basically, communication should never be a lecture or a monologue. If you’re doing most of the talking, it’s not really good communication. Communication between a doctor and a patient really should be a two-way exchange of information. So this is something that’s easier to explain in English than I have found in other languages, because in English we have two different words. One is called disease and the other is illness. And the disease is basically how the doctor views the problem. The pathology, the symptoms. The illness is how the patient views the problem. The symptoms that they experience. What is the effect on their life? And also, any emotional baggage that comes with it. Fear, anxiety, uncertainty, helplessness — all these different things to the patient. And it’s very important that when you deal with communication, you understand the difference between the disease and the illness. Now, traditionally, there’s been a relationship between doctors and patients where basically the doctor is the major player, and the patient is less so, and all the information flowed from the doctor down to the patient. In recent years, there’s been an effort, globally, to sort of bring the patient and the doctor more on an equal level. And that the communication is not one way, between the doctor and the patient, but really flows in both directions. So the things I’m gonna talk about, for the rest of this presentation, for the most part, are taken from a document that was prepared in 1996, called the Calgary-Cambridge Observation Guide. This was a collaboration between a hospital in Calgary, Canada, and Cambridge University in the United Kingdom. And this has been used as a textbook for patient communication for the last 20 years. So let’s look at what this is all about. Basically they came up with a bunch of skills, 70 different skills, that you should know. And we’re not gonna go through all 70 of these. I’m gonna pick out the ones that are most important, and put a bit of a spin on some of them. But basically they divided them into three different categories. One is content skills. What it is that you’re communicating. What you say or show. Then process skills. This is how you communicate. And the last one, which is interesting, is what they call perceptual skills. And that is basically how you interpret the disease, the patient’s point of view, and your own attitudes and biases, and the reality is that we all do have attitudes and biases about certain kinds of patients. If you’re a cardiologist, and your patient is overweight, and they smoke, and no matter what you do, you have a certain thought… Why do I even bother? I’m not gonna change them anyway. Health care professionals do carry a lot of attitudes and biases, which you should be aware of. How does it affect the way you speak with your patients? So there are four stages of any consultation. I’m using the consultation very loosely. Any time you sit down with a patient to discuss something. So the stage one is the initiating of the consultation. Stage two is gathering information. Three is explaining and planning. And four is closing the consultation. Now, although all four are important, I believe that one and four are the two stages where people make the most mistakes. Where they get it wrong. And I will go through those, as we get on in the program and deal with each one. But as I say, it’s really… How you start and how you close the consultation, where, if you don’t get these stages right, you’re gonna have problems. So: Stage one, initiating the consultation. An important part of communication, whether you’re talking to a patient or to a group of people, is preparation. Is knowing who you’re talking to. In the same way that when I started this presentation, I wanted to know who you are and where you are, so that I can start thinking about: How do I modify my communication to meet your needs? In the best of worlds, you should try and read a patient’s chart before the patient enters the room. I know this isn’t always easy. I’ve been to many field hospitals, where you have hundreds or even thousands of patients waiting outside. But the worst thing for a patient is that they walk into an examining room, and the doctor is busy looking at their chart, and doesn’t even look up at the patient until they start doing the examination. And so it’s really… If you can… If it’s possible, try and read the patient’s chart before the patient comes in. When the patient enters the room, it’s really important to greet the patient, and ask the patient their name. I’ve been in many different clinics in Africa and India, and this is a very common failure, that people do not ask the patient’s name, and I’ve seen several cases where the patient and the chart were not the same, so it’s important to ask their name. What’s equally important is that you should introduce yourself and what is your role. I’m Dr. Youngstein. I’m an ophthalmologist. I’m Mr. Youngstein. I’m an eyecare technician and I’m here to do certain tests. As you’re speaking to the patient, try as much as possible to maintain eye contact. This is why you shouldn’t be looking at the chart the entire time. And then ask the patient to sit down, make sure they’re comfortable, and then it starts with what’s called the opening question. And the opening question is an essential part of the interaction. First of all, don’t make any assumptions based upon what the chart says. And I’m gonna give you an example. A man comes into the clinic, and he has a piece of wood in his eye. And the chart says: Eye trauma, wood lodged in the eye. And so you say: Okay. This is why the patient is here. And you begin with your first question. You say: Well, when did this happen? When did the symptoms begin? And he said: Oh, it happened two days ago. Now, this may be true. But instead of saying when did your… Making the assumption that this is the real problem, and when did it begin, if you started with an open question: Tell me why you came to the clinic today: Then the patient might say to you: Well, the past couple of months, I’ve noticed that my eyes… I’m just not seeing as well as I used to see. It’s like everything is dark around the edges, and I work as a carpenter, and I keep having to get closer and closer to the wood as I work, because I can’t really see what’s happening. And then two days ago, all of a sudden this piece of wood flew into my eye. So all of a sudden, you realize: Wow, this isn’t just about a piece of wood. This patient may actually have glaucoma. Or if he said I have black splotches in my field, and I can’t see as well, he may have a diabetic retinopathy. So asking an open question really is the only way in which you’ll get to really understand what is happening. And this is why the opening question is so important. And what is very important is that, after you have asked a question, the opening question or any question, is that you listen. Listening is probably the biggest key to being a good communicator. And in the world, I find there are two types of people. There are those who listen and there are those who wait to talk. I won’t ask you what you are, but I think you should think about which one of these two you fall into, because many of us, especially after years of doing this kind of work, and being so expert, we tend to fall into this second category, which is really waiting for the opportunity to talk, and not really listening to people. So what does it mean to listen? And this is called attentive listening. Some people call it active listening. There’s a lot of different terms, but they’re all basically the same. The important thing is: Waiting is fine. There’s nothing wrong with silence. After you’ve asked a question, if the patient is thinking about something, you don’t have to jump in right away. And this you should encourage the patient to begin speaking, or if they’ve begun to speak, say: Please continue. Please go on. What’s very important is: Do not interrupt the patient. And in studies that have been done, the incidence in which doctors or health care workers interrupt the patient is very, very high. So it’s very important. Your own non-verbal communication. Let your body language show you’re interested in what they’re saying. Don’t sit back and be looking at other things. Listen to the patient. Move in and show them that you’re interested. And at the same time, look at the patient’s body language. See: Are they uncomfortable? Just really watching the patient will tell you an awful lot about what’s going on with this patient. So the most important thing, at the end of this, is that you have to confirm what you have heard. And that is by giving the patient basically a summary. And so you say to the patient: Gee, if I understand right, for the past couple of months, you’ve had problems seeing. You find that there’s a lot of darkness around this. You’ve had to move closer, and that’s what led to this injury or whatever it is. And then you say: Is that correct? And the patient will say… Yeah, that’s correct. Anything to add? Yeah, I also get a lot of headaches at night. When I’m outside, the lights are blinding, the street lamps. So it’s really this part of the confirmation that’s really essential, to show that you understood what’s happening, but it also involves the patient. It gets a dialogue going between you and the patient. So the holy mantra of communication is: Ask, listen, and confirm. When I gave this lecture in Cameroon, back in November, I did it in French, and it’s much nicer in French. I had a whole room of 150 doctors and nurses sort of chanting along with me, as we went through this thing, at every stage of the program. We can’t do that in a webinar, and it’s not as nice in English as it is in French. So an important part of dealing with patients and patient communication is understanding the patient’s disease beliefs. Everybody has them, and sometimes — I’m gonna jump down to here — but these beliefs can be scientific-based. Hopefully that’s what we use. But they can also be religious-based. That disease is a punishment from God and can be cured by prayer. I’ve met many patients and I asked them: Why is it that you were diagnosed a year ago, and now you’re here? The local priest I should pray, and I did, but I didn’t get better, so now I’m here. There are also local shamanistic beliefs, that through sacrifice or traditional medicines we will get a cure. Or local information. Someone in their neighborhood gave them an idea and that’s what they think is going on. A good way to understand their disease beliefs is to ask the question: When the problem began, what do you think was the cause? When I ran my laboratory in Liberia, we had a hospital alongside of it, and in Liberia, 80% of the time when you ask the question, the answer is: My neighbor doesn’t like me and put a voodoo curse on me, and that’s why I have this problem. I don’t know if in the places you are you have this problem, but this is something to think about. Asking the patient what they think is the problem will give you tremendous insight into what their disease beliefs are, at any given time. What’s very important is that you always be respectful of what a patient says. So if they say: Oh, this is a punishment from God, and we have to pray, you don’t say — oh, that’s nonsense. How can you believe in such silly things? You basically say: Yeah, prayer is very good, but it’s also important that you do X, Y, and Z. So don’t disrespect their beliefs. Try to work with them, in terms of getting a good understanding. So that finishes stage one. Let’s go to stage two, gathering information. So of course, the basis of this is always the physical examination. What’s important is that as you are doing each test, it doesn’t take any extra time to say: Oh, I’m now doing this to look inside of your eye. Or I’m doing this to see if there’s a certain problem. Encourage people to ask questions. Ask them questions. As you’re doing this, you can really be talking to the patient. And while you’re doing this, hopefully if the patient is answering your questions you’ll end up with what’s called the patient’s narrative. This is their understanding, their story of what’s happening in their disease. And the way in which you do this is you always start with an open question, and then you slowly, slowly — what’s called the open to closed cone. You get down to more closed questions. So: Oh, you say that you’re having trouble seeing. What kind of problems are you having? Well, I’m having this, this, and that. That’s, again, an open question, but a little more closed. Then you get: Well, is it worse in the daytime or the nighttime? That’s a closed question. There’s only one answer. Daytime or nighttime. Or they may say it’s the same in both. So try and start with open questions, and then dig down into what’s going on by using more closed questions towards the end. So after you’ve listened to the patient, it’s important to summarize. At the end of the session, say back to the patient what you think you have learned from them. This shows the patient that you’ve been listening. It makes it a collaboration. And then it allows the patient to either say: Yeah, that’s exactly what’s going on, or it really isn’t like that. It’s more like this. Okay? So: Stage three. This is explanation and planning. Now, here the goals basically are to provide explanations in ways the patients can understand and remember. And you can do this by giving explanations that relate to the patient’s experience of the disease. So always — oh, you’re having this problem because of this symptom. Of this cause. So as much as you can relate the underlying condition, a cataract, to what the patient is experiencing, the better the patient will understand what is going on. When you come to the planning stage, it’s also: The more you can involve the patient in the planning, the more likelihood you’re gonna get adherence to the plan, and it’ll be something that the patient can actually follow. So… Explanation. You always have to remember who you’re talking to. In most Western hospitals, basically you’re talking to the patient. In most of the developing world, it’s very rare you speak to a patient alone. There is usually the patient, along with a caregiver. If it’s a pediatric, this is almost 99 — you know, 100% the case that the patient is in the company of a parent or a grandmother or some other caregiver. And with your very elderly patients, most of these patients require somebody — usually a son or a daughter — who comes along with them to accompany, and they will sit with you during the entire — I’ve just come back from India, where you have the entire family. I think sometimes the whole villages come along. So you have to be able to understand: To whom are you going to direct your communications? It’s important to never ignore the patient. Even if the other person in the room is the decision maker and the caregiver, think about: Each time you deliver a message, to whom are you giving this message? Is it to the patient or to the caregiver? You have to think about this. The important thing is that information should always be given as a slow infusion and not a quick push. Don’t give too much too quickly. As I said, think about their disease belief. Think also about their language, their knowledge base, and their emotional status. The more upset they are, the less likely they are to listen and understand what’s being talked about. There’s a system called chunks and checks. So try and break down your information into small pieces, and then each time you deliver the piece, check that the patient has understood. Deliver it and then check. Do you understand this? Does this make sense to you? Okay. As always — this is nothing new — try and avoid terminology that is too complicated. Jargon. Keep it simple. The other thing here is about using appropriate visual aids. Most of you have received all kinds of wonderful visual aids, mostly from pharmaceutical and equipment suppliers. A lot of the stuff I see in clinics basically was created as marketing materials to doctors, and very often is overly complicated. It may not really be appropriate for use with patients. So think about what it is that you’re showing your patients. Also if you have an illiterate patient, giving them a brochure is not gonna help them a lot. So think about: What is the capabilities of the person you’re talking to, and pick visual aids that really are appropriate for them. Always remember to encourage the patient to ask questions. And if you have a lot of things you want to discuss, sometimes it’s good to organize what you’re gonna say. To say: Look, I want to talk about this, and then we’re gonna talk about that, and then we’re gonna talk about this other thing. Is that okay with you? Okay. Let’s start with the first piece. So give it some kind of organization, so it doesn’t all flow together and gets lost in the patient’s mind. Planning. I’m just gonna do this quickly. Always remember that there are a lot of options. There’s never just one. There’s always the option to do nothing. There’s always the option to wait and see, do further tests. There’s medication. Sometimes medication, sometimes surgery. And for some people, traditional remedies may be a viable option. So keep those in mind and never assume that just what you think is the right option is the only option. Treatment considerations. Always think of these things, the age, the general health, the impact of delaying treatment, the distance from the clinic and ability to travel. In many of the countries we’re talking about, this is a very important consideration, in terms of everything that you do and they do. What are your own clinic’s resources? To talk about something that you can’t offer, a treatment for a patient, is often not very helpful. You have to look at what kind of support the patient has, and of course, the issue of cost. Both in terms of travel and time away from home, also for not just the patient but caregivers, and in the end, what the treatment itself may cost the patient. So these are all very general considerations. So let’s now go to the closing of the consultation. The most important thing is that you review what’s been discussed. Go through it and say we’ve talked about this, we’ve talked about that. And then the most important thing, I think, of this whole lecture, is a concept called the teachback. And the teachback is basically: Tell me what we’ve discussed. What is your problem, and what are we going to do? I’ll give you an example. The Flying Eye Hospital was in Cameroon last fall. There was a woman who was scheduled to have her cataract operated on the next day, on the Flying Eye Hospital. As she was signing all the papers and was ready to leave, I said: Excuse me, Madam. Tell me: What’s going to happen? What’s the story? She says: Well, the doctor told me tomorrow they’re going to give me an injection into my eye. There could be bleeding, and I might go blind. And I said… And? She said: No, that’s all I know. And of course, the nurses that were sitting with me at this moment were a bit shocked. And this was a very intelligent and beautifully dressed woman from the local community, and the BBC television crew that was along — they were gonna actually go back to her house to interview her and her family. And this was all she understood from the entire process. So by doing the teachback, it’s really important to understand what it is that the patient understands and what’s going to happen. And use this opportunity to correct whatever is necessary. So, in summary, of the Cambridge and Calgary guidelines: The most important things you have to remember is to always ask. This is a two-way conversation. It’s not a monologue. Use open and then go to closed questions. Listen, using what we call this attentive listening approach. Always confirm and always summarize. And use the process that we called teachback. So what are we doing to sort of help you in this venture? First I want to talk about communicating in the real world. All of this stuff from the Cambridge and Calgary guidelines were done at Hospitals in Canada and in Cambridge, England. It’s not the same as being in some of the places where many of you are practicing medicine. And so let’s talk about how do you adapt these kinds of things to the real world, to your real world. And the first is the whole issue of limited time with each patient. Many of the things I talked about do not have to add time to your interaction. All these things at the beginning, about initiating, introducing yourself, getting the patient’s name, while you’re doing the examination, asking them questions. This is not going to add a lot of time into your discussion. So try and do things that make sense. The next thing is the long waiting times. I’ve seen sometimes, as I’ve said, hundreds or even thousands of patients in some clinics waiting on clinic days. The more these patients have to wait, the bigger the problem is getting their attention. They are physically exhausted and emotionally exhausted, by the time you get to see them. So I am trying to work with Orbis and other organizations to come up with ways of reducing patient waiting times, by bringing some of the tactics that companies, corporations, have used in other industries, to bring it in, to try and reduce waiting times. I believe this can be done. So I hope to get back to you at some point, talking about strategies that you can use to reduce waiting time. The other real world consideration — I touched on this before — is the fact that you’re never just talking to one person. You’re always talking to a whole constellation of people with very different needs and interests. There’s the patient and the family members or the caregivers. So trying to decide which is the person that you talk to, and what message for each one is very — it’s a big problem. And this is something that you have to be very fluid and each time you turn and face another person, think: Okay, who is this person? And who do I have to address in order… What do I have to say for this person’s needs? A big problem, and I’ve seen this everywhere, is languages. In many hospitals — I see this more in Africa than I’ve seen in India — the professionals who work in these clinics often come from other regions and do not speak the local language. This is very true of doctors. Many doctors are non-local. The nurse is more likely to be local. But if you have a large catchment area, you have many languages. Often travel a few kilometers and you get a completely different dialect. So many hospitals are talking to patients through interpreters. The important thing here is: Don’t talk to the interpreter. Talk to the patient or the family member. And let the interpreter do his or her job. If you spend your time always talking to the interpreter, and not to the patient, you’re going to have problems. Within these patient populations, a lot of your clinics have very large catchment areas — you’re gonna get urban patients and you’re gonna get rural patients. And there are big differences. Cultural differences, educational differences. In reality, without being condescending to rural populations, they tend to be different from the urban populations. So each time, when you meet with the patient, you have to think about: Who is this patient? What are their disease beliefs? What is their educational level? What are the barriers they face with things like travel, getting to the clinic? So this is something, again… Is a real problem. You have cultural barriers to care, which do not exist as often in Western hospitals. And then there’s the whole question of: How do you organize your teams? Who should do what? You have… Depending upon the size of the clinic, you have technicians who do the initial screenings, you have the doctor who does the eye examination, you have nurses, you have, in some places, professional eye counselors, eyecare counselors. But very often the job of the eyecare counselor is more in dealing with the paperwork and also dealing with — if you have a sliding scale in your hospital, of free patients, low-paying patients, and high-paying patients, they are very often the people who deal with selling packages, basically, to the patients, which is the kind of lens that you’re going to implant, what level of care are they going to have… So it’s always unclear who does what. And I have seen, when I visited hospitals, patients… I ask the doctor: How come you didn’t discuss the operation and what’s gonna happen? Well, that’s the job of the nurse coordinators. Then I go to the nurse coordinator and say: You’re busy filling out forms, but you didn’t talk about the operation or the aftercare. Oh, that’s the job of the doctors. Everyone assumes that somebody else is doing patient education. I think it’s very important that within your teams you recognize this problem and that you basically decide who will do what. So let’s talk now about some of the things which I’ve been working with Orbis to basically help you do some of these things. And one is something called The Eye Book. On the screen, but also if you see… Here is The Eye Book. Currently in Africa, it exists in English and French. And what is The Eye Book? It’s not meant to be given to the families. It’s in A5 format. You can see the size a bit better here. It’s easy to hold in your hands in any situation. And The Eye Book is not meant to be given to patients to read. It is a tool for you the professional to use when you talk with patients and their families. And you can see the different tabs along the side. There’s the normal eye, external diseases, internal diseases, refractive error, and a separate section on pediatric. And what this is — it covers many of the same diseases, but also ones that are unique, like retinoblastoma, for example, or retinopathy of prematurity, that are unique to pediatrics, but if you talk about the same condition, like a cataract, the urgency and the procedures may be different, so we have a separate section on pediatrics. This is the cover. Inside each section, we have original illustrations. For Africa, we have African faces. For India, we have Indian faces. We really try to make it local. These are all created specifically for The Eye Book. These are not borrowed from other sources. Then we have, for each of the diseases, a text page. In the Indian version, it’s all in local languages. So it’s there, and these are meant to be talking points, guidance for the health care professional. After you’ve done this for a while, and you basically have internalized these talking points, you can just flip over these pages, into — there’s always an illustration or a photograph of what is the problem. Then we have anatomical drawings. So what’s happening inside the eye. We have illustrations that will show what is the surgical procedure. And very often, before and after photographs, to show the patients as well. We also, for every disease, use what we call an analogy. Some kind of a way of showing — this is especially helpful for the family members. The person who is not or patient who is at a very early stage. Yes, this is what you’re seeing now with your glaucoma. But if you don’t treat it, it’s gonna look like this, and then it’s gonna go to that. And we’re adding one more box, which is blackness, which is blindness. This helps the patient and the family members understand the illness, not just the disease. Okay? So I hope you understand that distinction. So here’s the pediatric section. We also have separate pictures of children, not of adults. Here’s an example from retinoblastoma. One of the big problems we face with retinoblastoma is that the patient comes in — if they come in early — all they have is a white disc. And they think of it as something like a cataract. We have to explain to them: This is what the situation is now. If you wait, it’s gonna look like this. And eventually it’s gonna look like this, and at this point, there’s nothing we can do to either save the eye or sometimes even save the child’s life. And I think unless they see something like this, at this stage, they’re not going to be motivated to come quickly and get treatment for the patient. So we have all of these. These are again photographs I took in Africa, for use by Orbis and this book. At the back of The Eye Book, we have what we call The Eye Pad. And this is a block of paper, and we encourage the health care professionals to make little drawings. It’s very important to write the name of the diagnosis here. Any other information. We consult with the individual hospitals to find out how you want to structure this page, so that we can give you pages that make sense for your clinic and your information. But this idea that you write down the diagnosis, make a little drawing, tear this off, and give it to the patient, or the family, when they leave the hospital, is an extremely important part of the program. So this is The Eye Book. We have now — as I said, we’re doing it in India as well, with all completely original illustrations. And it will be available — we’re doing it right now in Hindi and in Bengali. We’re going to do field testing, seeing the efficacy of this, and based on that, do any necessary changes, and we hope to roll it out in all the major languages throughout India, for use. The next thing that we’re offering is something called the active communication training simulator. And this is an online software. It can be used either online, or you can use it offline, which means you download the courses from the internet, even if your connection is slow. You can work completely offline. And basically we have simulated interactions with patients. So here is a patient who has a cataract. It’s a video. And he’s talking about… Well, if we take it out, his ancestors may be upset, because so many people in his family have had the same problem. It must be something that’s in the family. And what happens is that if you’re using a computer with a webcam, it will then immediately, automatically, as soon as he stops speaking, we turn on your webcam, and you get a chance to answer. And after you’ve answered the question, you can then see your playback. How did you answer the question? Now, we also provide you with help screens. There’ll be a question mark here. And it’ll say: Did you talk about this? Did you talk about that? We don’t give you a script to read, because I’m not a believer in scripts, as we said. There is no one right answer for everyone. So we give people guidelines. And then you can say… Oh yeah, I did that. But gee, I didn’t think about that. That would be a great thing to do. Let me try that as well. And so then you can practice this thing. And we have all kinds of exercise, in terms of listening skills, strategic skills, analytical skills. Basically we’ve created a whole library of different kinds of patients with different kinds of illnesses, and you can then practice. Now, understand you’ve done this exercise, you can then have somebody else look at it, either locally or on your own computer, and this also works on an iPad. Or you can upload your best recording, up to the server, and then colleagues from anywhere in the world can look at your best recording and give you feedback. And basically they watch your recording. And as they watch it, they can then type in comments. They didn’t understand the patient’s concern, or your answer wasn’t quite focused, or that was a great answer, but you could have done this, or your body language is getting bad, so we have this possibility of doing online communication training, within the organization. So those are the tools. We will be offering this to programs throughout the world, in local languages. The program supports all local languages. It’s not a problem. If it’s Arabic or Chinese, we already have it in two versions of Chinese. So we hope that we will roll this out internationally for anybody to be able to use. If you wish to do so. So this basically ends my presentation. And I would like to ask just a few questions. The first, if Lawrence could put it up, is basically: Was this presentation helpful? And your choices are: Well, not really very helpful. Somewhat helpful. Or very helpful. So go ahead and let me know. Okay. Thank you very much. That makes me feel very good. The next one has to do with the specific tools that I’ve been developing. So, for example, The Eye Book. Do you see The Eye Book as something that you would use in your region, if of course it is adapted for local use? For example, I would not use it, I might use it, or I would definitely use it, if it was available. Okay. That looks good. And then the last one is the ACTS program. Would you use an online or offline program to do communication training for members of your team? So the answer is no, perhaps, or yes. Okay. Thank you. We will try and get some more specific feedback from people later, to understand which people, for example, would not want to use it, and understand why, and what we might do to help you and your needs. Okay. So this ends my presentation. I’m ready to take your questions. Lawrence, do I stop sharing now? Or how do I do this?

>> Yep, you can go ahead and stop your share. And then you can open up the Q and A box.

KENNETH: The Q and A box. Okay. Here we go. I’m a Canadian optometrist. I often spend time explaining ophthalmology reports. Diagrams, models, and animations help. Patients sometimes come to me just for this and are willing to pay for this. Okay. Interesting comment. I don’t quite see… As I say, it’s really a comment more than a question. Yeah. I mean, I just think… As I said, one of the points I made earlier is that: Really think about the tools that you’re using for these explanations. Because many of them, I’ve found, over the years, have been not quite really appropriate for the audiences, and you may have to think about it. Next question. Hi, at my place in Africa, we don’t have The Eye Book. Can we get it? The answer is yes. Just contact Orbis Africa, and let’s see where we are. Yes, as Jonathan points out, The Eye Book is available on Cybersight. So you can look at the entire content. If you’re gonna look at it now, I would also remind you that we’re working on this new version for India, and the experience we’ve had developing the India book — we’re adding a lot of new features to it. So keep looking at the Cybersight to see the updated version, which we will then do updates for Africa and India and the other places we bring it. There is so little time to speak to patients. If there is one thing that is absolutely essential in communication, what would that be? I would say it would be the teachback. No patient should leave you without being able to explain to you what has happened. And if you don’t have time, if they come back to you in the teachback, with something completely absurd, they just missed the point of the whole thing, either keep the patient a little bit longer, or find somebody else in the hospital to answer these questions. This to me is the most important thing. Do the best you can throughout to do these things, but the teachback is the most important thing. If this patient leaves you without some kind of a fundamental understanding of what’s happened and what should happen in the future, then really nothing is going to go well. So I really recommend this idea, before they leave. Okay, tell me what’s going on. What is your problem? What are you gonna do next? And I think that’s the most important thing that we can do. So is there anything else here? It seems to be the last question.

>> Yep, that seems to be the last question. Maybe we’ll wait one more minute.

KENNETH: Oh, does Orbis accept doctors as volunteers for a few months anywhere? This is a question which I think somebody from Orbis should try and answer. Can you answer this, Lawrence? I don’t know the answer, exactly how it works, with doctors.

>> I can follow up with this attendee.

KENNETH: Okay, if you can do that, that would be great. Thank you very much. How important it is to speak to the child as well as the caregiver? Very important question. It depends on the age of the child, of course. Unfortunately, so many children are brought to clinic with these congenital disorders, and in that case, talking to the child isn’t gonna help a lot. You talk to the parent. But if the child is of an age where they can interact with you, by all means — it is so important that you treat the child as your patient. And that you talk to the child. And I’ve been to a lot of these pediatric clinics with Orbis, and it’s wonderful to see how engaged they can be. First of all, you want them to be cooperative, in terms of doing the Hirschberg or any other test. But it’s very important. I’ve got a few minutes here, so in terms of the child — the whole business of refractive error, it cuts across so many of the things we talked about, in terms of disease beliefs and cultural barriers. Getting children to wear glasses is a multifactorial issue. And so the important thing is really: First, dealing with the child, making sure that this child really understands why it’s important that he or she does this. Give them copies of The Singing Tree, if you have it in your country, because that’s what it really addresses. And the important thing is then talking with the parents, with the caregivers, that they understand the importance, that this child wears the glasses on a regular basis, and trying to uncover from them what possible barriers there might be to their accepting the child wearing the glasses. And very often it’s split. The mother may get it, and she wants her daughter, for example, to do well in school and be successful, and the father is only thinking: Oh, if she wears glasses, boys won’t find her attractive and she won’t find a nice husband and I’m not gonna be able to marry off my daughter. So when you’re talking with the family, understand the needs of each individual member, and try to address what are the concerns of these people. But back to the question: By all means, if the child is of an age where they can interact with you, please do not ignore the child by talking only to the parent. So are we getting anything else? Doesn’t look like it. Okay. I think we’re done. I’d like to thank you all. I’d like to thank Cybersight and Orbis for giving me this opportunity. And if you need to contact me, Orbis will be able to put you in touch. Okay. Thank you very, very much.

Download Slides


Related Content:

April 13, 2018

Last Updated: October 31, 2022

Leave a Comment