Welcome And Why Global Matters

SPEAKER_01 0:00

Good day, everyone, and thank you so very much for joining us again on speaking with the patient experience. Today is the Vermont's very special day for times making house foundation because I know it's hard to get it. It's on the lovely and my lovely Fortnite got into the girl and a lot of her stop and stop the fashion and mom please for me. But stop and before into me and then before into our foundation because I've been her a couple of years ago. I really believe in your mission and I want to be able to think you. And so she's working for three, four years and I was like, here I need to always do whatever I ask for do something. She's like, okay, Tim, let me get it done. You know, she has not to do it, you know, we'll work around it. And as a patient was going through my own healthcare challenges and wanted to try to uplift the voice of all patients. Um, I thought it was really, really important to have, I think it's really, really important to have that kind of stuff. So when I started looking and I keep hearing these words, inclusive. And I'm like, okay, so when inclusive, inclusive to what? Inclusive to who? And a lot of times we in the United States, we're so focused on our own what's going on in our country, that we lose sight of the fact that the issues that we're having in our country when it comes to disparity and care, when it comes to undiagnosed conditions, when it comes to those things that are important to us as patients. We lose sight of the fact that they're happening globally. We hear more about it because it's America, but it's happening globally. So Saba Pakistan, I'm like, I have to find a way to get her involved where people can see her and hear her voice, graciously accept it when I said, Saba, let's do a, you know, let's put this in front of everyone so that everyone can know that these issues that we're having in America are not just in America, they're happening globally. So, Saba, I thank you so much for taking the time out of your busy day to come in front of everyone and speak to everyone uh that will be watching and listening to this.

Defining Patient Experience In Pakistan

SPEAKER_01 2:30

Saba, my first question to you is based on your global research when it comes to Pakistan, which is where you reside and your academic work as a PhD scholar, how do you think international health systems define patient experience? And how does that compare to how patient experience is um is understood? And not only that, well, I'm not gonna ask you about the United States, I'm gonna ask you about Pakistan. How is that patient experience um looked at in Pakistan coming from a global standpoint?

SPEAKER_00 3:05

Sorry. So, first of all, I would like to say thank you for having me. It was a pleasure to be here and share my experience, and I'm honored that you included me uh as a speaker and gave me a chance to talk about something really important. So, when it comes to patient experience, and particularly when we talk about our country, so yes, if we if we generally talk about it, this patient experience is basically that it's a time which is felt, which is spent by it's a it's a journey which is spent by a patient. And especially when a patient goes to the hospital and then that patient is going to have an experience, have an exposure, some perspective about the environment. And that includes so many factors within it. So the similar thing is applies over here as well. Patient experience is uh is perceived as something, some time, some journey, which is spent by, which is done by the patient him or herself, and that is uh influenced by so many things, like if we talk about the communication, if we at the healthcare system level, if we talk about um it's like responsiveness from the healthcare system and different other factors which are sometimes related to the healthcare system, and the other times related to the patient and not herself. So all these factors affect the uh patient experience, and that is the collective role. That is something which is collectively important from both of the ends.

SPEAKER_01 4:58

And you know what, and you're you're so right when you say that, and that is something that across the lines is the same. The patient experience is the patient experience, right?

Caregiving And The Weight Of Misdiagnosis

SPEAKER_01 5:07

So when it comes to the patient experience, the patient themselves, um, we go through our own thing, but you're a caregiver for your dad, and you've been a caregiver for quite a few people in your family. How does that patient experience affect you from the second level of being the one that's actually caring for the patient?

SPEAKER_00 5:27

Yeah, so if I particularly talk about my family members, like my father, who has been in a chronic condition for like a decade or more, and then my uh brother, who was 15 days is old, and he was um diagnosed with the congenital heart disease. So from that day, I have been taking uh a responsibility as a family member that someone needs my support, someone wants me to be at a particular level, someone uh in my family, a member in my family want to wants me to look at something uh in more detail after them. So this is something I I really perceived as a responsibility, an additional responsibility maybe not all of other people uh would get as a as a person. So um their experience as a patient is uh is entirely different. And and that actually affects the personality as well, I would say. Because most of the times I put my uh myself in their shoes and I understand I try to understand their situation. How would they be feeling when the when let's say their heart heart rate is high or their blood pressure is high? So, how would they be feeling? I try to understand their situation and act accordingly and try my best to uh you know control the situation, also to consol uh concern them as well and explain them the whole situation and let them let them like feel relaxed and safe and uh be okay with some of the conditions and start normalizing things. One of the main uh aspects I would say is that as a caregiver, I would have to uh I would have to play dual roles. Uh sometimes uh taking care of them and sometimes actually perceiving myself as a patient and understanding their situation and act accordingly. So this is the dual role I think I uh usually have to play. And uh my father was diagnosed with um diabetes back in 20 uh 12, 20, 2012, and then um uh after that um he was uh a few years back, he was misdiagnosed with two of the conditions, one of the neurological conditions. So it was misdiagnosed with Parkinson, and uh then it was treated for more than six months, and finally, with some biochemical analysis, it was found out that it is myctenia virus. And when finally it was diagnosed that it is mytenia virus, so the condition when when it was diagnosed correctly, it went it try to you know uh follow a na uh proper treatment. So the treatment then worked when the diagnosis was done correctly, and then I myself, uh, as a daughter, I I myself feel relaxed that finally the diagnosis was done correctly and now the treatment is working actually. So at a very early age, I was taking care of my brother as well as a family member. So I had an idea that uh how to give support to a patient uh who is um who is uh like he is, I would say my brother is um like he is the strength, has the strength and and and even more than me. So that is something I really feel and I appreciate it and try to um you know uh buck him buck him up uh most of the times. And most of the times I don't even usually have to do it because he bucks all of us up. So yeah, so this is the uh basically the uh you know mix up of the caregiving and the patient experience I have uh been exposed to so far.

SPEAKER_01 9:01

And thank you so much for that. And thank you for sharing what's going on with your you know, what's going on with your dad and you know what happened with the misdiagnosis and very often in our country, you know, based on a lot of times based on race, we're undiagnosed or we're misdiagnosed. And it takes someone that understands. I used to tell my mom, and she continued wrestling in heaven. I used to tell my mom all the time, I'm like, Ma, you are kind of one of the blessed because you have daughters that are in the medical and healthcare field. So we can help with, you know, with them giving you information and you not understanding it and you wanting to, you know, wanting to find out what's really going on. We can do the research for you. But so often in America, I know that there are patients that go misdiagnosed or undiagnosed until it's much, much, much too late to do anything because they don't know who to go to or what to say when they go to these people until they they sometimes get left out. And so I thank everyone that works, and I'm gonna thank you as well for not being that go-to person for your mom and your, you know, your mom, your dad, your entire family and your community, because I know that you're doing some work in the community as well. And making sure that patients understand when they're giving these diagnoses and stuff that doesn't look right, that they have a voice and they can speak and ask those questions. So thanks so much for being a loving caregiver that you are for your family.

Culture Access And Consultation Time

SPEAKER_01 10:33

My next question is this from your perspective as both a scientist and a medical educator, what cultural or systemic factors most influence patient experience internationally? And how do these factors shape patient rights and responsibilities?

SPEAKER_00 10:51

There are so many factors. If we uh look at the care systems, they have they should have a complete framework, a standardized system, which is going to make sure that the patient who's coming in and going out has a level of satisfaction. Yes, and then the actual best health outcome as well. Not even the satisfaction, but also the uh uh best health outcome is important and has to be the goal of uh the you know the a good uh healthcare system. So uh the factors which uh I believe that most affect patient experience, they their access, their access to quality health care is really important. Their uh cultural uh, you know, beliefs. So their culture and their beliefs they are very important and they vary uh region to region. And here in Pakistan, they are they that particular aspect affects the most and most uh on this um patient experience. And um affordability is also a challenge over here as another factor which affects the patient experience so much. So when I I would like to go into the detail of this factor basically, because uh most of the governmental healthcare systems they are there for all of the public, but there uh you know when someone uh goes uh as a patient is having a particular pressure on their own that uh not even the pressure but also the question, am I going to have a good quality of care? Because I can see there are a lot of patients waiting in the waiting rooms, and they finally when they get into the clinics, and uh most of the times uh doctors they spend less than expected time during cancellation, and that is uh the most uh you know most important. So, what uh we perceive in in the in our culture is also perceived that when a doctor listens to the patient most um, you know, it spends most of its time uh in in the consultation uh uh process, so that actually helps a lot to understand actually the condition, the situation. So asking so many questions uh and getting so much information is particularly important because that gives you most of the picture background information, which otherwise no one knows uh about a first time coming patient in the clinic. So, this is one of the most important things that uh the the uh the interaction of the patient with the doctor and the time is spent in the consultation is really important. And uh culture cultural based thing is that this time is perceived as a most important time if someone goes to the clinic and uh he or she sees that yes, doctor listened to me very carefully, and he or she was uh responsive so much so that their half of their uh weight from the shoulders just just goes off, right? And they they see they feel like yes, this was uh their uh situation was not like so much stress, no, and they are supposed to be relaxed for some of these uh situations, and when they would be relaxed, the situation will be under controlled, and it things would be most of the things can be normalized. So most of the time it's psychological, and then it it works that way. So this was one thing. The other thing is that access and the affordability as well. Affordability is most of most uh uh important over here. Most of the public they are not capable of affording so much high fees uh is from doctors and the high quality care uh uh in the private sectors. So most of the so the uh availability of the technology is um we can say is more there in the private sectors, other than less than the uh you know governmental sectors, and uh their maintenance, um their uh you know compliance is questionable in those uh areas, and therefore people just think about that they should go to the the to the facilities which are more developed and well maintained, but they can't afford it. So this is another thing which affects patient experience as well, and then the whole healthcare system um as in in the whole uh picture.

Paying For Care And Trust Gaps

SPEAKER_01 15:20

You know, you're you're explaining Pakistanian medical system, the healthcare system as it is, and I so vividly see the same thing happen in America. And I know, you know, with us as far as the accessibility, the fees are so high so often that I mean, and we have we do not have universal health care in America. We pay to go to the doctor, we pay premiums and deductibles, and currently the premiums and deductibles are so high that unfortunately people are bypassing medical care because they just simply can't afford it. Um, there are resources here in America that people can go to, but just as you just explained, um, even in Pakistan, do you have half um universal health care or is it not universal?

SPEAKER_00 16:14

So I would say that that that is not universal because everyone has to go uh when wherever they are, wherever uh like if they get ill and they have to go to the clinic, they have to pay. There is no uh particular system that is uh you know universal in in nature that if they pay at at one time and they just go to the clinics and get proper health care immediately. And uh so without paying, or maybe the prepaid versions are available, that system is not in place so far.

SPEAKER_01 16:44

Oh wow. And and so it brings up another question in reference to that. Do you have this Pakistan have in America we have federally health qualified centers? So if a patient doesn't have insurance and they need to go to the doctor's office, they have the access, they have access to a federally health qualified center. The problem here in America is that a lot of patients that qualify for the use of a federally health qualified center have never heard of the word before. So when I bring it up, if I'm talking to a patient and I bring it up and they say, hey, I don't have insurance, it costs too much, whatever, I said, Well, have you gone to an FHQ City? And they're like, Oh, what? And so when I explain it to them, they were like, I never even knew that existed. Do does Pakistan have something very similar to that or no?

SPEAKER_00 17:36

So uh when it comes to the public who are salaried class, the salaried class, they not all of them, but a part of them are can get the benefit from this um uh insurance. Not all of them, not even I think I am also salaried, but I uh have no such kind of insurance. But yes, since I am um connected with an organization, certain amount is given as a medical benefit kind of thing. But that that unfortunately doesn't does not cover the whole uh expenses if God forbid, I just care uh just uh you know an accident uh uh happens and uh I just you know uh admitted maybe go to the emergency. So it they would uh support me, but eventually I would be paying all of it by my own bucket because it would be it wouldn't be another uh uh set of uh or maybe another uh you know um uh provision of any budget or something for me uh other than my salary actually. So this is something. So basically uh and and the those those uh uh salary class who are uh who are having that benefit of insurance, what they can do is if they are in need, they can go to the hospital, get admitted. Only the admissions are uh you know uh have the uh the medical benefit backup kind of thing. So uh not their consultations, not their normal consultations, clinics, uh appointments with the doctor, they are not covered. They would be only covered when they would go and admit to the hospital, and then the insurance can be utilized as medical benefits for those who have insurance. And uh when and yeah, and and yeah, and when I talk about those who are not doing any job or not salaried, so the only thing they have, the only option they have is a government hospital to care free of cost, health care, but again, their systems are not well developed, not well maintained. So the public is just um taking risks basically. And yes, you're very right, and they are not even aware of so many things, so just you they just say this the culture is basically they just say okay, that happens, okay, we'll we'll see it, for example. So they don't go to the hospitals over and over again because they don't trust actually. So this is how it goes most of the time.

SPEAKER_01 20:06

Yeah, you just brought up a a a big word that covers so much of healthcare and so much of the medical system, and that's trust. And a lot of times patients don't access, even when they are made aware of there's options that they can use to, you know, get health care, the trust level is just like totally broke. But from what you're you know, how you're explaining and what you're explaining to me, there has got to be a lot of people in Pakistan that are not receiving medical treatment that are just like, okay, so let it, you know, whatever happened, let whatever happened happen. Because they just don't want to stand a way to be is to come into life and like hold back on what you began and the promises that you have in front of you because you like, okay, so if I get things technically if I get a diagnosis, well, my life is over, right? Because I don't have health care and there's nobody to take care of me and nobody to treat me. And that's why it's important for us here in the United States to understand that yes, we have a very rapid um healthcare system, yes, it's expensive, yes, it's a whole lot of problems with it. But just listening to you talk about what the people in Pakistan have to go through, we have to realize we're not the only ones going through this. So when we look at inclusivity and we look at that word and what that word means and how that word is defined on a global level, is defined so differently. You know, I often say to people that I meet from different countries who I, you know, who are like saying, you know, I I would I would love to come to America. And I'm like, but why? Everything is so expensive. But just hearing you today. If I can say, right, and have healthcare, what do I do? So I went complaining. We do have something to be thankful for because at least we do have some absolutes. Some of those absolutes. But at least we do have some absolute that the people in Pakistan are both in Pakistan. You guys don't have access to it. So it's like I'm at the will of like something's gotta change here. So thank you for explaining it to me because for the longest time I've always questioned, I'm like, well, why are you trying to come over here? Why are you trying to come over here? Put a listen to you in here and you explain it to me. It makes perfect sense. It's like because you guys, why y'all are complaining of where I'm from? So thank you for that.

Scientific Literacy And Shared Responsibility

SPEAKER_01 22:53

My last question to you is as a PhD, well, actually not my last, my second to last question to you, is as a PhD scholar working in physiology and metabolic research, how do you use these scientific literacy and health education impacting patient experience on a global level? And what strategies do you think might help us close that gap between clinicians, caregivers, and patients?

SPEAKER_00 23:21

Yeah, so uh as as far as my research is concerned and my educational background is concerned, um, physiology has been my field since um since a decade, I would say. And uh that helped me a lot understanding about uh human body, their normal physiological system, and then when you understand the normal function, then you better understand the abnormal function as well. So that uh makes the understanding it's strong that one has to have a balance in the life because our body, the nature works on the balance. I would I believe that. And that balance is uh necessary and that can be implemented. We can at least try to maintain it at every level. So this was one uh aspect that I I on on a daily basis I try to implement, and uh and that another thing uh that is basically the uh foundation for understanding the healthcare system and uh improvising it and more making more development into it. Uh and how would that be on the both of the ends on this healthcare system and and on the patient uh level end as well. So it's not only the uh system which is faulty, I would say, but also it comes to their patient's responsibility as well. Because when uh the healthcare system is strong, they are taking care of the patient's uh dignity, their uh privacy, their security. If they're doing it, on the other hand, uh uh the patients are also supposed to be adherent to the treatments and be communicative in nature so that the whole of the system works in a balance. So uh both uh at the both ends, but but first the system has to be strong, and what I can see the main difference between the developed countries and with the other with our country is that the that system difference. So system has to be first uh in place and that has to be monitored on a regular basis so that um so that we can make sure that yes, as a system you're working fine. Now it comes to uh it the focus comes to be on the patients as well, so that they can we can make them that you should follow a particular treatment plan or particular diet plan or something and so on. So uh they would when they would say see that yes, the system is uh you know monitoring something, yes, we would better be able to, we should be doing this and that, and this way we can uh make improvements in the system and and at both both levels. So this is this was one thing which I could um uh understand and I can feel that would make improvement as a whole.

SPEAKER_01 26:09

Thank you so much for that.

A Three-Year Vision For Patient Voice

SPEAKER_01 26:11

So I am going to actually ask you the last question because I do realize that we're we're on borrowed time, right? Um, in reference to systems, and I'm so very, very thankful that the internet held up on both of our ends for both for our um discussion today. And it's this um you were a part of the PPA program, which is the Patents Professors Academy program. You completed that program last year, which helped you with the public policy piece of what's going on here in America, what's going on in Pakistan, how the two systems link, and how they are separated. When you're five, I only want to put you on a five-year vision board. I want to put you on a three-year vision board, and I want you to speak from your heart, and I want you to speak how you think, whether it's in Pakistan or whether it's in America, how you think what you learned through your involvement with the program and once a PPA public, once a PPA alumni, always the PPA alumni, and you know that because you can reach out to anyone in that program and ask them questions, and they'll always, always answer you because you took the time to get thoroughly trained through them. So my question to you is your three-year vision plan, whether it's in America, whether it's in Pakistan, what it where do you see yourself and where would you hope that you will be able to grow the most so that you can help the Pakistanians living in America as well as the Pakistanians living in Pakistan? Where do you see yourself at in three years if you had, if you were granted your wish, where would you see yourself at?

SPEAKER_00 28:01

So I would like again, first I would like to thank you to give me a chance to be a PPA graduate. I love that program and I am honored to be a part of that program. That PPA Profess Patience Professor Academy that gave me so much of the experience and so much chances to meet people who are so much experienced, who are experts in their fields, and who can help whenever they that is required. So it was amazing to be uh to to understand actually that even living over here, understanding system out there, and uh, you know, identifying areas in our system which can uh which can be improved uh according to accordingly, basically. So basically, what I think is that framework which was taught in that program was brilliant. The tennis trap framework was the the most important and the basics of uh of uh of the whole uh system how it should work. And patient voice and patient experience is something I could learn from PPA. I never ever learned about it before, only PPA taught me what is patient's voice and what is patient's experience actually, and the importance of caregivers as healthcare partners. So, what I think is that uh what in in the in the near uh three years, uh what would be the uh what would be the possibilities and what would be the improvements I would say uh can could we make uh to improve the overall system is that uh patient experience and patient voices like this, the sessions like these should be uh uh uh encouraged and should be you know uh implemented in near future so that patients themselves can talk about their conditions, their experiences, their challenges, how do they feel, how do they tackle with particular conditions. So, whenever any any kind of uh situation happens with a patient, that patient actually represents that situation. And when a patient talks about his uh condition, that is the most purest form of the experience, I would say. Not even I, as a caregiver, can explain that condition, as uh as a patient can explain that condition, and that is something I really appreciate and I could, you know, uh get a good idea of when I taught uh when I just uh attended that uh PPPA program. I was amazed to see uh so many patients over there uh sharing their experiences and actually helping the healthcare system to improve. And that is the thing which is missing in our system, I would say. No patient voices. I at this moment of time, I I feel that uh patient voice is missing actually, and that is the thing which can uh make the make the most improvements in the system in the next three or five years, I would say.

SPEAKER_01 31:02

Okay, so you answered that a little bit, but I want you to tell me what you where do you see yourself at in the next three years in reference to helping encourage that patient? Where does Saba see herself fitting in at as far as helping the patient experience get known, whether globally or internationally?

SPEAKER_00 31:25

Um, when I personally uh like I talk about uh focusing on myself, I had an idea in my mind for uh and I didn't um share that idea with anyone so far. It's the first time maybe I am sharing with you that is the physio club or physiology club, you can say. So that club is is just a primitive idea. Maybe it would be implemented. I I tried um sharing that as an idea in some of my applications as well, but they were not accepted somehow. But uh I have that particular uh framework in my mind that there has to be a physiology club, there has to be a physio club that can work as a uh as a medium for some some you know some kind of mix of the things which can be a barrier, uh uh, you know, uh you can say bridge between the healthcare system and the patients. So this physio club is giving going to give uh an information set of information which uh is now at this moment of time is missing, which has to be there at the patient level and has to be there at the uh the healthcare system level. And I can uh recall one more thing which may I'm just um just slipping from my mind that uh there has to be a connecting person who is there in the community, which connects the healthcare system with the patients, and that is the mean that is the medium which I feel myself would be in next two, three or five years, who is actually making a connection between these two things uh in a different innovative way, and that innovative way would be a club, a club which actually disseminates the information, which is accessible for everyone, and uh which is you know very user-friendly as well. So, no uh technical terminologies, no uh fancy terms which otherwise layman is unable to understand or the normal public is unable to understand, but it has to be so much easy for normal people for like public so that they actually understand what they should be doing and what they should not be doing, at least. So do's and don'ts are really important, and that has to be uh informed very well in a very timely manner, and this is something I I feel that I could be doing in the next three to five years, near future.

Building The Physiology Club And How To Help

SPEAKER_01 33:53

You know, Saba, and I can say this, right? You know, there's nothing to stop you from getting it done. I actually see you with the club doing exactly what you just mentioned because in working with you over the past three years, I know it's within you, and I know that you lead not from a place of the outside world, but you leave from within. And so a lot of times it bothers you because hey, I'm trying to leave from within and nobody's seeing me. Just yet, right? There's a time and a place for everything. Just yet, nobody's seeing you, and nobody's seeing the importance of having a physiology club. So that means that if you're listening to our discussion today, whether you're in America, whether you're in Pakistan, if you understand the world of physiology, if you're like, I agree with her, yeah, there needs to be a physiology club, no matter where you are in this world. Reach out to Tabus who's on LinkedIn. If you need to reach out to her through myself, you can also send me a message and say, hey, Sandra, um, I heard from Taba the, you know, one that we had on an international discussion. I would love to speak with her in reference to this club. There's all types of clubs and groups, thanks to the internet, the wonderful world and social media a lot of times can be used for beneficial things versus in beneficial or unbenicial things. And that physiology club coming together, maybe bearing, you know, being the founder of it and making it a reality is only a step away. So you have my support as far as the physiology club. If there's anything that I can do, you know, to help you get that club going. Just, you know, you know me. You understand? This is what I'm trying to do. Help me, please. And you know, I genuinely will answer you as as much as I can to try to assist you because I know that you're bleeding from the heart. I know that you're in, you know, a different country. I get a little, I've gotten a little bit better understanding of what's going on in Pakistan. And I know if it's going on in Pakistan, it's going on in so many of our other brother and sister countries who are struggling with health care and struggling, trying to keep their people alive and trying to bring the best health care that they can so that those patients receive the best medical care. Because you have to go through health in order to get to medical. And that's the business of understanding, understanding and then making it happen. Healthcare is understanding, medical is making it happen. And so to actually see that trajectory path going forward in other countries, it gives me a great deal of pride knowing that one person who's behind that pushes you. And there are others, but one person that's behind that push to making sure that that trajectory of health to medicine is gonna work for all patients. So

Kindness As The Closing Principle

SPEAKER_01 36:54

thank you. And as we end this film, as I always say to everyone, please be kind. Add being kind to the top of your list of things that you must do in order to get the information out, in order to make people comfortable, in order to make this world just a great, great place. Um, be kind. It's free, doesn't cost a thing. Please be free always. I'm free, please be free always. Please be kind always. Once again, it's free. Thanks, Saba, so much. I so appreciate you.

SPEAKER_00 37:28

Thank you. Thank you so much, Sandra, for having me and giving me a chance. It was a pleasure to talk about this uh really uh you know important experience. And uh I just want to say thank you for uh always being there and supporting me and you know identifying potential in me, which even I can't say. Thank you so much.

SPEAKER_01 37:51

You're welcome. You have the rest of a great day.

SPEAKER_00 37:53

Yeah, you too.

SPEAKER_01 37:54

All right, take care.

SPEAKER_00 37:56

Bye bye.