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- #considerthis
Patient-centred care is often promised, but how much influence does the ‘patient voice’ really carry in healthcare decision-making? When does patient input actually shape policy and practice? On this episode of #ConsiderThis Melisa Idris speaks with Manvir Victor, Founder of Vital Signs Asia, and Founding Chairman of the NGO, Patients for Patient Safety Malaysia. He also serves on the Malaysia National Patient Safety Council and is a board member of the WHO Global Advisory Group on Patient Safety.
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00:00Hello and good evening. I'm Melissa Idris. Welcome to Consider This. This is the show where we want
00:15you to consider and then reconsider what you know of the news of the day. Patient safety is often
00:21framed as awareness or education or even culture but patient safety failures usually point to or
00:29reflect how systems are designed, how they're governed and how they are incentivized because
00:35when patient safety fails who is it that the healthcare system is really designed to protect.
00:42So joining me on the show to discuss the issue of patient safety further is Manvir Victor who is the
00:47founder of the healthcare portal Vital Science Asia. He's also the founding chairman of the NGO
00:52Patients for Patient Safety Malaysia and he also holds an international presence as a board member
00:58of the WHO Global Advisory Group on patient safety. Manvir, welcome to the show. It's good of you to join me.
01:04Thank you Melissa for having me.
01:06I want to begin maybe by let's get getting the definitions right or understanding what it means.
01:13So when we talk about patient safety, when we talk about the patient voice, what are we actually
01:20talking about when we talk about when it comes to the everyday setting of healthcare?
01:26Okay I think first of all in some countries the terminology is a little different. In Malaysia it's patient, in other countries it's the consumer, it's the user, it's the person, it's the person, it's the person with the lived experience which also includes the family members because sometimes you're caregivers.
01:47You're caregivers, right? So you are the person who's in the system looking after someone else. So you are also a user, consumer of the system, right? So in Malaysia the word is used patient. When I first started in this journey 26 years ago actually when I fell ill, right? I started in this journey. I always used to say the word patient is very important. Now I've realized that over a period of time the word consumer is more important or user.
02:16Now the reason why is because healthcare was created to help people live their lives better. You're ill, you know, you need to get well, all these things happen. And healthcare, the word, is a one word. It's not two words. It's not health and care, it's healthcare, right?
02:37So it's fused together because the care needs to come with that, right? And a very key component of that is understanding what the user of the system is there for, right?
02:50And it's myself, it's family members, it's people who are suffering, right? So it's about that care, the health and the care that goes with it, right?
03:01So let's back this up a little bit and look at the landscape first, right? Now the world has about 8.2 billion people, right?
03:11Malaysia, our population is 34, 35 million, right? Healthcare staff in the world is 70 million to take care of 8.2 billion, right?
03:22In Malaysia, our entire infrastructure for health, private and public has about 350,000 staff, right?
03:33These are doctors, these are nurses, these are radiologists, these are paramedics, these are janitors, these are allied health, everything.
03:42Three hundred and fifty thousand taking care of about 34 million plus. This is a huge odds, right? How do you do that?
03:53So having the consumer involved in it, because I'm the guy who goes to the hospital, we've got family members, you've got friends who go to the hospital
04:03and we are people who see the system from the other side. We are the users of the system, right?
04:08and as we go in to use the system we find that things could be a little bit better right so
04:15this is the importance of having that patient voice is actually having the consumer voice to
04:21come in and tell them excuse me I think we can do this more efficiently better and and faster
04:28everybody wants things faster we are in this instant generation today right where everyone
04:34wants things faster so how do we get there right and unfortunately in my experience when I'm looking
04:41at it sometimes and I joke with a lot of my doctor friends there are too many doctors in healthcare
04:47and what I mean by that is a doctor is great when he's sitting across you and helping you
04:53with your illness he can't actually help you with your parking issues he can't actually helping
04:59help you with the time that you're spending in hospital right that is a whole different mindset
05:05but I guess it also very much contributes to the experience of healthcare yeah absolutely so
05:15when we go to a hospital and this is the complaint that everybody has is you know I have to go tomorrow
05:22to do my blood test at 8 30 in the morning so I woke up at seven o'clock so I jammed up the parking lot
05:29at seven a.m to go to take my blood at 8 30 and the counter opens at eight right and so there is
05:37this whole gamut of people there and how do we make this faster right now if you look at the airlines
05:45and I and I love the the the airlines uh comparison because ever since I started in healthcare a lot of
05:52people older people who are more experienced to tell me that we should compare healthcare to the
05:58airlines and and the safety record so I went a little bit bigger and I said let's look at the
06:03entire airlines you know we get in on flights 200 300 people it's seamless why are we able to do that
06:11seamlessly right where else two or three hundred people in hospital to take blood it's a jam right
06:18it's absolute gridlock there right so how do we use other industries to help process people faster
06:27are the other I love the airline comparison because you're right the this process is seamless there is a
06:33everyone knows the process so there's no really kind of uh vagueness about uh where to go what to do
06:41but are the are these apples to apples comparisons meaning are is healthcare this has does healthcare
06:51have the same kind of public interest um uh view or profit driven view similar to all these other
06:58industries well I I think at the end of the day healthcare is a human right you know someone is ill and
07:05they continue to be ill and they can be healed if there is a medicine to heal that person why are we not
07:10healing that person so now we it's an affront to that person to not heal that person so it's a human
07:15right right so it's not a profit driven it should not be profitable right but is there an incentive for
07:22it to be efficient and uh patient-centered of course it has the because if if you are efficient and patient
07:29centered you end up saving more people that's the core thing at the end of the day Malaysia we we have a
07:36fantastic access to health in the sense that um I think about 95 percent of our population has access
07:43to either clinic or clinic or anything within five kilometers of where they are that's fantastic right
07:49but do we have the equity because when we go to the hospital we have to wait for hours and hours and
07:53hours so this comes back to the the proposition of the the idea where you've got 350 000 people taking
07:59care of 34 million that's just I mean I I don't I don't envy the person who has to do that but being
08:06the 34 million and I'm going to the system and I'm saying how how can we make this faster how do we
08:12improve this right and having that patient voice in there to help them improve the system that that's
08:18that's all what we want right because there is an opportunity cost when systems are not efficient
08:24uh tell me manvir how much are how much influence does uh patient does the patient voice actually
08:32carry when you have these um when you think about the governance of of uh health care I'm just wondering
08:39what happens when you have a patient voice a patient perspective that is in direct conflict with
08:45the institutional priorities be it you know uh cost be it um investment or legal or risk even yeah well
08:55I this is where I think as a patient as a person as a human being the reason for that business is to
09:02save people's lives that's it it's not to make people fly from point a to point b right like the
09:08allies it's to save people's lives so the more people you can save the better you can give them life
09:13this is all great right so that is the core of what they are there for what the industry is there for
09:19is to create and have people healthy a healthier nation means a more productive nation
09:26right uh so I'll tell you that I was on dialysis for 10 years and being on dialysis mean that I couldn't
09:35work that I had to take from the system rather than giving back to the system now since I've had my
09:41transplant in 2012 I'm able to work pay taxes do all these things so my perspective sometimes as a
09:48patient is clouded in a way when I when I look at myself and say I'm a taxpayer I'm a voter then I'm
09:56a patient because I am a taxpayer and a voter 24 7 I'm a patient maybe one hour a day right so that
10:04should be important for people to realize that a healthier me a healthier nation means that there's
10:10more people productive giving into the system rather than taking from it right so from a national
10:17perspective every country looks at it and says the sick people how do we reduce that sick people
10:22right so that's again health care because it's the promotion of health among the nation right so that
10:31a healthier nation can you imagine that I mean in maybe in a dystopian world or something that no one
10:37falls sick ever can you just imagine that can you imagine how happy people will be yeah right and
10:44that's what we want at the end of the day and you know so if you're happier all the time you probably
10:49have less mental health yeah there's a lot because without health nothing else matters right absolutely so
10:56so we've talked about the patient voice let's look at patient safety okay and how that um how that is
11:02centered in healthcare governance um when patient safety fails who does the system protect what happens
11:12when patient safety fails well patient safety is supposed to save the patient right now I have to be
11:20very honest in the sense that this is a 24 7 business you walk into the hospital with a stomach ache it could
11:27be a myriad of things that you have you know you could be having an ulcer that's going to burst you could be
11:32having appendicitis this is there's a ton of things that can happen to you just from walking in to an emergency
11:37with with a stomach ache so the doctor on call the person there he's got all these issues right and he does that
11:46not for one hour a day he does that all the time and I'm sure that in government our doctors are very very good really
11:54but they are stretched thin because you know they've got 30 40 50 patients to look at and then go for his
12:00ward routes and may maybe do surgery and maybe do follow-up so these guys see 50 60 patients a day
12:07so that the chances of any sort of mistake whether it's a doctor's mistake or the nurse's mistake or the
12:15pharmacist mistake is very high because you're you're literally a deaf country yeah you're operating at those
12:22levels right yeah so the chances of mistakes happening is very very high right but there are
12:28policies and processes put in place to make sure that it doesn't but let's say something slips through
12:35and it does I'm sure it doesn't every single day whatever clinic you are it does happen so when it
12:42happens everyone needs to sit down and say okay what they do is they call they call this a root cause
12:47analysis okay and RCA so they sit down they have this RCA and they try to figure out okay what went
12:53wrong where where was the the the mistake where did it actually happen how do we stop this from
13:00happening again and so now currently they all sit down the clinicians sit down and they understand
13:07better oh okay I made this mistake or you know I I didn't my writings don't great whatever it is you
13:12know those mistakes happen right because they are rushed but how do we solve it so it doesn't happen
13:18again tomorrow and this is what they do quite well having patients involved in it also does help them
13:26understand the patient's point of view right because I've met a 55 year old lady who had breast cancer
13:34she was terminal but she didn't want any medications she said all I want is to see my daughter get married
13:42that's it and then I'm done her daughter obviously didn't want that but that's what the mother said
13:48I don't want to go through chemotherapy because I don't want to lose my hair she assumed that's going
13:53to happen to her but so having that patient voice meaning that you have to give respect to that person
14:00I said okay this is your point of view okay this is what you want right and giving them that
14:05personalized choice to decide that this is what I want with what I how I'm doing things the same goes
14:11for medications that you give across you know I've had patients come up to me and ask me for advice
14:17and my doctor gave me 20 medications I'm a transplant patient so I've got about 20 25 medicines that I
14:24have to take a day right and if I stop taking one it causes another problem right but I have to be
14:31diligent in the fact that I'm taking it and some patients some other patients who are doing are having
14:36other illnesses they've just really the chore to take their medicines so they come up to me and I
14:41said you have to listen to your doctor you have to trust your doctor your doctor is thinking the
14:45best for you and he has given you this medication sometimes you need to be on it for the rest of your
14:50life sometimes because of lifestyle changes you can get off it but have those conversations with your
14:56doctor and a patient advocate has that ability to talk to other patients at their level okay I can spend
15:04more time with a patient than a doctor can merely because I don't have 50 patients to see a day maybe
15:10I have three or four so that really helps us be able to understand that patient a little bit better
15:15and tell them you know we want you to take this medication we want you to go through this process
15:20I know it's tough but listen to me all right are patient advocates um an inbuilt part of the
15:27healthcare system is this generally practiced worldwide to have patient advocates be part of
15:34a patient's experience yes in other countries they are uh very very well versed uh in some european
15:42countries when you want to build a hospital in in some place and you've got a budget of whatever 40
15:47million euros or whatever to build a hospital the first people you engage is the patients and you
15:51tell them okay we are building a hospital your committee what do you want it to look like
15:55what would you like in this because it's a community hospital then you ask the clinicians
16:01how do you want the surgeries how do you want that part because that part is going to be set
16:05set in stone but the the part that you are able to change is to make people comfortable coming to the
16:12hospital wanting to come to the hospital because some some places in in the world they don't want a
16:18car park they say no we don't want a car park we'll take the train in we want to do things like
16:23that so that is that community so there's no one size fits all but having the patients in other
16:29countries where you're able to uh share your opinion and then people look at it and say yeah
16:35that's a good idea let's let's do it that way we're going to spend money we're going to build a hospital
16:39let's build something that you are happy with you know because you're coming in when you're ill
16:45how much power does the patient have because again many people uh many people who are ill
16:50you know car car parks and ease of experience is not top of mind it adds to the experience it can be
16:57an inconvenience it can be it can be more than inconvenience it can be the worst part of the day
17:02but they're there with other worries on their minds so how much power does a patient have in
17:09i guess shaping what health care governance looks like do um hospital operators hospital
17:18governance boards do they listen to what the patient wants and what the patient needs in
17:23malaysia now they are starting to listen okay now they're starting to listen they are understanding
17:28that the patient voice is very important a lot of them that i work with tell me that you know people
17:34complain about their services because let's let's let's let's face it like you go to a restaurant the food
17:38is fantastic you don't tell anybody but the food is rubbish you will tell everybody right this this
17:44is the this is human nature right so they will get the bad reports and i tell them yes there are bad
17:51reports look at the bad reports and see how do i improve that did we make a mistake we improve that
17:56but where are the good reports where are the good stories because i've i've been this patient for 26
18:02years i've had good experiences i've had bad experiences but i want to remember the bad the good ones
18:07because i tell everybody i had this really good experience and everybody goes oh yeah and when i
18:15tell them that great experience they go like oh but you're the only single voice i say i'm not
18:19you're just not listening right you're not engaging with people and asking them what do you like about
18:25my facility is that part of your role so you are on um boards of safety councils nationally and also
18:32globally do you then engage with um healthcare leaders to say this is what we need this is what
18:41we like this is is that the role of these bodies so i i try to best enhance what they have right i try to
18:48best enhance and i ask them to also improve think the next level right um one of the things i always
18:54joke about is my grab app knows more about me than my hospital does it knows when i want pizza or
19:01whatever and it gives me those deals my hospital never does that you understand and they're two
19:08different apps but why is it that information is not used to better my life you know on one side i'm
19:15getting promotions and deals to to be unhealthier what's there to make me healthier so we live in this
19:23world today where it's a digital world everything's available and how do we keep that conversation
19:30going because at the core of this you're talking about healthcare what does what is the proposition
19:37that healthcare can promise you they cannot promise you an outcome you can't go into the hospital and
19:44know that you're going to walk out healed and everything's going back they can't promise you that
19:48what they can promise you is trust me the hospital that i will do my hundred percent for you that's
19:57trust right and trust takes a relationship it's not built overnight it takes time to build that
20:03relationship now as i walked in here today i realized that 30 years ago today i walked into astro
20:10to work here right and so you look at that brand of astro and consider this is one of the programs
20:16that now you're a trusted brand you're a trusted brand the people in this building have changed
20:22but the brand remains trusted and that is what exactly healthcare organizations are trying to do
20:30so it's not built on one particular doctor one particular ceo but an entire brand and it's that
20:37trust that astro has with millions of people right i i see so in my role as journalist i see i speak to a
20:45a lot of medical associations and there are associations that talk about the doctors
20:51welfare well-being and then nurses and allied health professionals and all the different
20:56components that make up healthcare who's fighting for the patient who's fighting for patient rights
21:05patient education how how would we as patients know what it is that we can and cannot demand for
21:11in a healthcare setting so unfortunately we learn about this through negative things you know when
21:17when when somebody sues the hospital and then you find out hey this kind of mistakes happen
21:21because they do they do but it's not very public is it uh there are a lot of cases that are becoming
21:27public now our medical litigation is going up year and year right so because because we're getting
21:33more ill we're getting more age society a lot of these things happen and when when hospitals don't have
21:38enough space it means that you're running at full capacity chances of mistakes are are there right
21:45so it's not that they're intentionally it just does happen it's not perfect right it cannot be perfect
21:52because it's human it's built around human beings doctors nurses whatever patients they're all humans
21:59right so having that there is very important for people to understand that this is where the landscape is
22:06the doctor or the facility did not mean to harm me but the harm did happen we find out about the
22:15what our rights are when it's a bit too late but what we are trying to do is have those voices
22:22also there to tell people you're doing the right thing yeah you're up against it there are so many
22:28people in your hospital but you're doing the right thing here you're doing the right thing there
22:31how do we improve on it right man is there um enough transparency when miss when medical harm
22:40happens unfortunate as it is and human as it is when medical harm happens is there transparency in the
22:47system that everyone knows and can learn from what it is so that patients know this is a right and then
22:54the system also knows we need to correct this in a word no i would like them to be more of that
23:01because you know you look at it and you understand the mistake and you you probably tell everyone
23:05we made this mistake you made this mistake because i can tell you there are a lot of times when
23:10i've had situation myself where when a doctor tells me you're supposed to take this medicine at 10 o'clock
23:15and i forget and i take it 11 o'clock so that's my mistake right but i have to own up to it and i tell
23:20my dog oh i forgot to take this medicine or i didn't take it correctly you told me to take it this
23:24time but i did so we we are also responsible for it so we do contribute to that mistake being made
23:32so if we are transparent everyone can sit down at a table and say yeah okay i made this mistake you
23:36made this mistake how do we move forward from this how do we have accountability there's not enough
23:40transparency there we don't have that and i would blame the lawyers okay talk to me about how um
23:46the the what disincentivizes that transparency i think the fear of litigation it's the fear of
23:55litigation that people are afraid oh if we own up to this mistake we're going to get sued for it
24:00but i think you know um if you think about it from a different point of view if if there are people are
24:08like myself and i and i am here sitting down as a patient advocate advocating for health care
24:13right now i've been telling you that doctors are up against it nurses are up against it all these
24:18things right and i'm telling you they will make mistakes and they're honestly a lot of them that
24:23i know are trying to do their absolute best sometimes somewhere there is a gap they don't mean for it
24:30to happen but it does happen right so how do we improve that if we don't recognize that there is an
24:38issue we can't solve the issue and that is where the lack of transparency frustrates me because i see
24:44it's happening if it happens three times i'm like okay so are you waiting for the fourth time fifth time
24:49sixth time well is there anything you would change to make transparency a bit better a bit easier make
24:56it easier for all parties to talk about what happens when patient safety fails so part of what who does is
25:04is to have patient advocates like me and we are training more patient advocates and these patient
25:09advocates are supposed to sit down on hospital boards there's a there's a board of visitor in the
25:14hospital so the board of visitor in the hospital will have the director of the hospital a few key
25:19people the clinicians and the nurses but we also should have patients sitting inside there to give
25:24the patient's point of view as a consumer user of service in that hospital say hey wait a minute you have
25:29this great plan about uh starting a blood test at seven o'clock in the morning but there's no
25:34parking spaces because at six o'clock it's going to be how do we do this process faster so the patient
25:41who's using the system who's sitting down there and waiting for three hours that's the point of view
25:46that we have to hear thank you so much for being on the show giving us an insight into why it's so
25:52important that we center the patient voice in health care i appreciate your time thank you so much
25:58that's all the time we have for you on this episode of consider this i'm melissa idris signing
26:03after the evening thank you so much for watching good night
26:05you
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