[MUSIC] Patient perspectives on medicine use is the focus point for this course. So what is more natural than talking to one of the many patients? Connie, welcome to this interview. I've invited you because you have actually been heavily involved in developing this course about patient perspective on medicine use, and you have given us very insightful information. Besides, you work in the Danish Rheumatism Association, which makes you very knowledgeable on how patients with rheumatism feel about medicines, how they use their medicine, what their attitudes are about medicines. Can you tell me a bit more about yourself and the medicine you use? >> Yes, well thank you for inviting me. My name is Connie Ziegler and I was diagnosed with rheumatoid arthritis when I was one and a half years old. And as a comorbidity to my rheumatoid arthritis, I also got several rather severe eye diseases. So I've been actually been using medications my whole life and will continue to do so the rest of my life, I would think. >> Can you tell me a bit about the practical problems that you experience with your medicine use? >> Yes, when it comes to my rheumatoid arthritis, I use five different medications and only one of them actually is to be taken daily. The other four, I have to take on different days during the week and also a different time of the day. For instance, I take one medication, which is a pill, I take Monday morning. I have to take that on an empty stomach. And when you have taken that medication, you're not allowed to eat anything, or you're not allowed to lie down for the next half an hour. I also have to take ten small, small yellow pills Monday evening and actually if I take this medication during the whole week and not all of them at the same day, then I can be poisoned. So it's rather severe if I take them in the wrong way. Furthermore, after I've taken these Monday evening, two and a half days after that I have another yellow pill. It looks almost like the other one, but it's just one pill and it's another medication and I have to take that two and half days after. And also the fifth medication is a syringe which I need to take once a week and this syringe needs to be kept cold until use. So even though it's only five drugs, it's rather complicated, I would say. So it really needs to be very clear for the patient what to do and this can cause, of course, a lot of problems. So it's not just a pill taken on the right time of day and at the right day, it's more complicated than that. Sometimes I talk about something I call the silent knowledge because I think every patient has a lot of information about themselves inside, but this information not always comes out. I call this information silent knowledge so that every patient have knowledge about themselves and the medication in their lives, but it's silent if it's not asked for from the health care provider. >> Can you please elaborate a bit more about this silent knowledge? >> Well, it is the information that you have inside yourself. I mean, every patient is different. We have jobs, we have all kinds of things, hobbies and things but we also know a lot about our own disease. We also know about how, maybe, how we find it complicated to take our medication and we have a lot of knowledge and this knowledge can actually be crucial for our treatment. And it's very important that we bring this out. I mean, it's the responsibility for the patient to take the right medication at the right time, even though that can be difficult enough, but it's the responsibility from the health care provider that they have to assure that the patient have the knowledge and also that they have the adherence to take these medications as they are prescribed. Well, you're actually asking a lot from the patient and if there are difficulties the patient needs to bring this forward. >> Very interesting, can you give me another example of silent knowledge? Well, it could be, for instance, if a patient is afraid of needles, but do not dare to say that maybe they're a bit embarrassed or something like that and the health care provider prescribe syringe. Then that's not very good. As a health care provider you could ask questions like are you comfortable with this type of drug? And do you have any difficulties? Do we have any questions? How do you take your medications and so on? So they have to ask because for the patient it can be difficult to say these things if they're not addressed from the health care providers in the first place. >> Can you give us some advice based on silent knowledge that healthcare providers need to take into account when they deal with patients? >> Well, I could give you also another example accident which I will try to elaborate and demonstrate it. The pill I was talking about in the beginning, which I need to take two and a half days after I take this, the other medication, the small yellow pill, I was told that this medication I needed to take to avoid side effects of the other medication, and but I thought to myself well if this medication reduces the side affects it probably also will reduce the effect, the good effect of the medication and I didn't experience any side effects. So, therefore, I said to myself, why should I take this drug? It's just another pill, so I don't have any side effects, so I didn't take it. And, actually, I didn't take it for many years, but suddenly that was myself asking,, I asked, well, why should I? Why do you keep asking me do you need a prescription for this? Why do we talk about it? Because I only have to take it if I had side effects and I don't experience any, and the health care provider actually told me, well, it also bettered the uptake of my other medication. That makes sense to me and okay then I can see why I should take this medication. And then I started to take the medication. But if nobody ever asked me, or assured that I knew why I had to take this medication, they often tell me how to take it and they just assume "I have told you to do so, you do so". But people are people, we just react and we consider it differently and why I take something which I think I don't need. >> To sum up, can you give some advice to healthcare professionals how they have to deal with patients in the best way Taking this silent knowledge into account? >> I think I will suggest that they have to be open minded. They have to ask open questions. They have to know that all patients are different. It seems very easy when I say it like this. But sometimes healthcare providers are in a hurry and they forget to ask all these questions. They have to ask and be open-minded and they have to listen to the answers. And they also have to know that not all patients are good communicators. And they need to be very good communicators, because then they can talk to all kinds of patients and they could not just give a written information about this is how you take your medication because many people are not that good at reading. So you have to ask, maybe let the patient tell, well, this is how I deal with this medication, this is what it does to me and be open for all these questions and listen to it and then try to help the patient in the best way because that also means that you can have the best way of treating your condition and taking the medication on the right way. >> Connie, thank you so much for sharing your experiences and medicine use and especially your experiences on the silent knowledge. I'm sure that the health care professionals can gain a lot from learning about this silent knowledge, and it will also open up for other patients to tell their silent knowledge to their health care professionals. I wish you good luck in the future. >> Thank you very much. [MUSIC]
