The day I met Dr Ron Hsu was a difficult one. I remember a room full of doctors criticising PKB. Here’s how Ron remembers it:
Initially, I came across it in an audience of a local regional conference in which Mohammad Al-Ubaydli, chief executive and founder, attended to give a talk about Patients Know Best. The title of the conference was How to Reduce Emergency Admissions. And I heard his vision. And I also heard the practical issues that members of the audience had concerning Patients Know Best.
[…]
The practical concerns that people had with Patients Know Best were related in part to the philosophy and in part to the technology. The philosophy of whether a patient was core or central to their health care and the management of their health care was something that a lot of people had great difficulty with. They talked about capability. They talked about capacity of patients. They also included the idea that patients weren’t desiring to be able to do this kind of management of their health care. The technology aspect was linked with, and they were predominately all doctors, concerns about the fact that the NHS IT technology had all sorts of problems. And they had no confidence that technology would be of such a quality that would enable the kind of integrated information exchange that Mohammad was describing. It was almost as though, from their perspective, that Mohammad was describing a science fiction that wasn’t ever going to happen in real life.
I went home quite sad that day because of the amount and tone of questioning from the audience. Apparently Ron’s memory is that:
Mohammad did very well in fending off the concerns, criticism, and questions posed, the practical ones. Except for one, which is when one doctor said, I haven’t been trained in this, so I won’t do it. Effectively. And he tried to intimate it was straightforward and simple, and I knew he was on a sticky wicket. And I suspect he did as well. So I approached him afterwards and said that I’m getting in about 200, 250 students a year and, if you give it to me for free, then would you be happy for me to use it to show them how to use it?
For the record, I did not think I was on a sticky wicket because I still don’t know what the term means. But he is right that that question was difficult for me to answer. And his suggestion was a wonderful one and I took him up on it.
I continue to learn from how Ron teaches.
But one example was that one avatar’s household had Alzheimer’s disease. The volunteer put forward the notion that– They were reflecting on the fact that they had to put down their dog a year ago. And then just put one extra comment, which is, and I think my wife would probably benefit, too.
And that sent the students off asking, what do you mean? And exploring that. And realizing that this person who is a carer for someone with Alzheimer’s was actually thinking of euthanasia.
The students contacted us.
I contacted to make sure that the avatar, the volunteer, wasn’t relating something in real life, which they weren’t.
But from the students’ perspective, they didn’t know. So they were actually very concerned, not just for the avatar, they were actually concerned for the volunteer.
And we managed then to contact the Alzheimer’s Society, and they came and talked to the students. And so the students, in their first year, were being taught about a disease that we wouldn’t normally teach them until their third or fourth year. And they were getting quite advanced understanding of what it is to have Alzheimer’s and what it is.
So the unintended outcomes that we came across were around personal development and understanding the impact of disease on people, and a professional understanding of the ethical and moral dilemmas posed by interacting with people, let alone the e-interaction.
The transcript of the interview is below and is well worth reading.
Transcript
00:03.650 –> 00:07.261
My name is Dr. Ron Hsu, and I’m a Senior Lecturer in Epidemiology and Public Health at Leicester Medical School.
00:12.780 –> 00:16.629
(interviewer) Can you start by telling me how you first heard about Patients Know Best. How did you come to find out about this?
00:21.880 –> 00:25.590
Initially, I came across it in an audience of a local regional conference in which Mohammad Al-Ubaydli, chief executive and founder, attended to give a talk about Patients Know Best. The title of the conference was How to Reduce Emergency Admissions. And I heard his vision. And I also heard the practical issues that members of the audience had concerning Patients Know Best.
00:55.550 –> 00:59.010
(interviewer) What about those concerns was interesting for you in terms of the teaching you do at Leicester Medical School?
01:05.950 –> 01:09.370
The practical concerns that people had with Patients Know Best were related in part to the philosophy and in part to the technology. The philosophy of whether a patient was core or central to their health care and the management of their health care was something that a lot of people had great difficulty with. They talked about capability. They talked about capacity of patients. They also included the idea that patients weren’t desiring to be able to do this kind of management of their health care.
The technology aspect was linked with, and they were predominately all doctors, concerns about the fact that the NHS IT technology had all sorts of problems. And they had no confidence that technology would be of such a quality that would enable the kind of integrated information exchange that Mohammad was describing. It was almost as though, from their perspective, that Mohammad was describing a science fiction that wasn’t ever going to happen in real life.
02:18.066 –> 02:21.005
(interviewer) And what did that mean for you teaching medicine students at Leicester?
02:22.730 –> 02:30.230
My stance to teach in medicine is that we could either work with a curriculum for teaching medical students from the 1950s and backwards, or we go from 2020 and onwards. And that was essentially the choice that I felt we were facing.
In 1950s and backwards, we’d take the traditional face-to-face consultation. The patient would spend time with the doctor and interact with the history taking, physical examination, differential diagnosis, initial management with investigations. And that would be a traditional format that people were used to both in primary care, community care, and in secondary care in hospitals and tertiary care centers. So virtually every doctor in the land, in fact, virtually every doctor in the world, would sign up to that kind of format.
I was thinking 2020, 2030, 2050, where is medicine going to go?
Because medicine traditionally has been a little bit like the church was before Galileo pointed out that the Earth was no longer the center of the universe. The church believed that all knowledge came from a sacrosanct script, a scripture of whichever nature, and all knowledge came from that.
With Gutenberg and the printing, the opening up of both the availability of knowledge and the change in the nature of that knowledge I would say was akin to what Mohammad was proposing. That no longer is health care knowledge within the domain of the health professional, and that knowledge was actually out there on the internet. And with the availability of that, it means that people are now able, if they wish to, to start looking at both their health, their disease, and the health care system.
The system itself– Quite a lot of the knowledge that health care professionals have is about the system. Who to contact, how to contact, et cetera, et cetera. So the vision I had was to teach medical students for the 21st century, as opposed to the 19th or the 20th century. And inside that had to be electronic communication.
And until Mohammad turned up, I just had this idea that it should take place, but I hadn’t realized that someone else had worked out how to make it happen. And I wasn’t talking just in terms of patient portals to a health care information system that’s in one organization. I was talking a patient centered health care portal, not an organization health care portal.
05:14.354 –> 05:15.020
(interviewer) OK. And can you tell me a bit about what happened next in terms of how and how you decided to bring that portal, Patients Know Best, into the curriculum at Leicester?
05:28.890 –> 05:31.310
Mohammad did very well in fending off the concerns, criticism, and questions posed, the practical ones. Except for one, which is when one doctor said, I haven’t been trained in this, so I won’t do it. Effectively. And he tried to intimate it was straightforward and simple, and I knew he was on a sticky wicket. And I suspect he did as well.
So I approached him afterwards and said that I’m getting in about 200, 250 students a year and, if you give it to me for free, then would you be happy for me to use it to show them how to use it?
And I think at that time, after a bit of further conversation, he realized that there was a benefit for both of us. One in meeting the vision I had. And the second in him realizing that if you could start to understand how to introduce it to an undergraduate curriculum, in this case it was Leicester and medical, but very quickly it could be any place, and it could be nursing and pharmacy and other health care.
Once he got into understanding how to do it, then there was a potential gain for him in terms of people couldn’t stand up and say, well, I haven’t been trained on it.
06:45.690 –> 06:48.000
(interviewer) And when did you first use Patients Know Best in your curriculum with your undergraduate students?
06:53.001 –> 06:57.930
It took me three years to get it introduced. And then I first introduced it in 2013 intake of students. And I used it in the very first week of them starting, which others had said to me was, for various reasons, they had concerns about it. But I thought, well, if you’re going to get someone to use, you might as well get them using it at the start, rather than introducing it later. So I had the advantage that they were obviously bushy tailed and keen. And that means that anything that gets introduced is going to be, oh, we’re going to do it. So I had that advantage. I also had the advantage that, rather than 200 students trying to interact on the system simultaneously, we had them organize in groups of about eight, so that we were just handling the groups. And each group was interacting with it.
So the introduction was in the first two years of our course. And we’re now looking at how we can extend that to further years in our course.
08:04.480 –> 08:06.710
(interviewer) So since you started using Patients Know Best, how many medical students have had experience of using that within their training?
08:12.560 –> 08:17.620
About 700 students now. Each year that comes in, we introduce it to them again. So we’re in our third group of students. And we’re planning for our fourth group of students in October.
08:28.950 –> 08:31.280
(interviewer) And can you describe how students interact with patients, and who the patients are, and when they do it during their course of medical education?
08:41.750 –> 08:42.289
Yeah. So we originally thought about using expert patients and then realized that we’d have to give them lots of diseases and they’ll be dead by end of semester one if we gave them a disease a week. So we realized that wasn’t a sensible way of doing it.
We did think about using members of public or non-clinical people or non academic people to actually come forward and portray their life, as it were, and the household. And the fear then struck me, that it wouldn’t fit to be taking 18-year-olds who have come out of school. And if they placed any information on Facebook or any social media, I was basically going to get sunk because I’ll have breach of confidentiality and I’ll have a scandal on my hands. And it was then that I thought of, but why don’t I use it behind an avatar. If I create an avatar household, then the volunteer could operate in that avatar. And any release of information, inadvertently or deliberate, to a social media site, for example, the complaint could come in.
But it would have to come in from an avatar who doesn’t exist. It would have to come in to an organization who is trying to track an avatar that doesn’t exist. And the person who’s actually had the information released wouldn’t necessarily be too bothered. And the student wouldn’t know that whatever they released, whether it was an avatar or any real information regarding to a real person who was completely anonymous to them.
And, in a sense, hiding the needle in a haystack made that I was able to protect the volunteers from any breach of confidentiality.
The way we worked initially in the first year, I had 12 avatars for 24 groups. And each avatar would be paired up, we would have two, with one pair of groups. And one week they’d interact with one group, and one week they would do the other group, and then switch alternate weeks. And I went to the module leaders of the varied courses and said, right, you’ve got weeks 1 to 10.
Tell me a question that you would like the students to explain to someone just so that we could be clear, or you could be clear, that they understood whatever it is that the concept is. I don’t want a fact yes/no question. I just want some conceptual question that they would have to explain a concept.
And they all did. The first two semesters, they gave me 10 weeks of questions, each one. And then I just placed question with avatar, and they would just ask the question and students respond back.
So it’s a form of asynchronous text communication. It was like a discussion forum. The requirement was that the students had to reply within two working days. Otherwise, the volunteer, in the face of an avatar, could actually issue a complaint.
And that has happened. And when I told the students that the avatar was thinking of complaining, I think the longest was 30 minutes before a response came flying back through the system. And, of course, no complaint taken.
But it took– for some of those students, it was a bit of a shock to realize that someone’s going to complain about them. And it was the first time that that had happened to them. So they were given a dose of real medicine, as it were, which includes the fact that if someone feels like it, they can complain about you, and you have to handle what comes now.
12:33.381 –> 12:35.630
(interviewer) And how did their, your medical students, interaction change in the second year?
12:39.606 –> 12:41.480
The first year, because we are predominantly science based in the teaching, that format of science based questions came through. And in the second year, we’d already taught them, as they went through the first year, about history taking and physical examination.
And so we introduced to the avatars a condition, a concern. And we gave them all the other aspects of that condition. So if it was someone with weight loss, and this weight loss we knew was going to be linked to depression, we will give them the other symptoms. And we would say to them, you just introduce, say, I’m losing weight. Just start the first one off. When they come back to you, you’ll find the answers in all the other bits that we’ve given you. But if it’s anything you’re not certain about, ask and we will help you out. And we know what the origin of the weight loss. And we’re going to see if the students can come back.
And the other aspect that we’ve introduced was that the pharmacy students, which is at De Montfort University, which is the other university in Leicester.
And they were also being taught clinical skills, so their tutors were quite keen to get involved, and also the interprofessionals. So the format was that the avatars would consult the pharmacy students as though they were consulting a community pharmacist.
Then after a week, they say, oh, I will consult the medical students who could see what the pharmacy students had done. And then the medical students have a go. And then, after one week, the situation would be engineered so that the avatar says, oh, well I’ll go and see my GP. And as you know, since it takes two weeks to see a GP, they get two weeks away from the students, and during those two weeks, myself, as a doctor general practitioner, would insert a GP consultation note.
And then the avatar would ask both pharmacy and medical or one or the other, what does this mean?
What does that mean? Because everyone could see the GP consultation notes. So it’s as though it was introducing the idea that interprofessional working meant the ability to see each other’s process of questioning, and also see each other’s notes. And that the patient is able to see all of it and then ask questions according. So the raison d’etre for introducing a software like Patients Know Best to students was to enable them to understand how electronic interaction, or e-interaction, in a professional capacity differed from a face-to-face interaction. And we thought that that was actually quite simple. We didn’t think that it was actually very complicated.
It was only when we got into it did we realize that it was much more complex than we originally anticipated. And that both students and ourselves were learning the price being paid of not having face-to-face interactions. And that this price was paid in the quality of the consultations.
And, in fact, things like how many questions do you ask when you post a discussion post to the patient became problematic. Some student groups were taking one question at a time. They were going to take forever to ask anything.
And other students gave a whole long list. And what the patient did, or what the avatar did, what they did was they generally just answered one or two, but ignored all the others. And the students didn’t come back and say, but you’ve ignored my other question. So even something as practical as that was causing problems. And we were obviously learning about how are we going to show students what is an optimal number. And how are you going to read into your interaction with the patient what is an optimum.
Some would prefer single, double questions, and some would prefer long lists at the start, and things. So it made the consultation much more complex. In addition to that, when patients had free reign, our volunteers realized that their anonymity gave them free reign to do anything. So we had domestic abuse, alcohol abuse, child abuse.
Now, we hadn’t taught the students this. And, in fact, it was the students that came to us and said, oh, we think we’ve got a problem. And then described it. And I would have to contact the volunteer and tell him to calm it down because otherwise social service is going to turn up looking for this avatar that didn’t exist.
And, of course, they responded appropriately.
But one example was that one avatar’s household had Alzheimer’s disease. The volunteer put forward the notion that– They were reflecting on the fact that they had to put down their dog a year ago. And then just put one extra comment, which is, and I think my wife would probably benefit, too. And that sent the students off asking, what do you mean? And exploring that. And realizing that this person who is a carer for someone with Alzheimer’s was actually thinking of euthanasia.
The students contacted us.
I contacted to make sure that the avatar, the volunteer, wasn’t relating something in real life, which they weren’t. But from the students’ perspective, they didn’t know. So they were actually very concerned, not just for the avatar, they were actually concerned for the volunteer. And we managed then to contact the Alzheimer’s Society, and they came and talked to the students. And so the students, in their first year, were being taught about a disease that we wouldn’t normally teach them until their third or fourth year. And they were getting quite advanced understanding of what it is to have Alzheimer’s and what it is.
So the unintended outcomes that we came across were around personal development and understanding the impact of disease on people, and a professional understanding of the ethical and moral dilemmas posed by interacting with people, let alone the e-interaction.
The e-interaction almost was irrelevant to this. It was just a medium or a platform on which these things were being picked up.
18:58.904 –> 18:59.570
(interviewer) OK.
Fantastic.
And just finally, in your opinion, what are the ingredients to make this successful in other medical schools or where other health areas are taught to students? So what are the ingredients to make it successfully deployed within curriculum elsewhere, in your opinion.
19:25.200 –> 19:27.300
Yeah. It is very much similar to many business models. So a clear vision as to what it is that the person is wanting to achieve, in simple terms that everyone can understand, and then someone who actually believes it and is willing to, or what wishes to drive that vision.
So a champion for that. There’s a considerable amount of logistical aspects to this. And organizing, basically, three groups of people. Organizing the volunteers, or avatars, or patients, because it doesn’t have to be though avatars, organizing the students, and organizing the educators, whether they be clinical or non clinical educators. And then the questions that would be prepared would have to be organized between the three of them and how to monitor it. So having a good angle on logistics is important.
So the fourth one would be the ability to interact with people and explain to people what’s happening. Because the software itself was designed for use in reality. We never got a test software or a pilot or education-based. It was actually the live system itself.
So in terms of education and how education runs to a timetable, you have to explain, or I have explain to Patients Know Best people, look, this has to be done now. I know it’s not someone’s life at risk, but, in fact, in education terms, it would delay things considerably to not put this in place.
But also the setup would be different between that one and the reality thing. So being able to communicate and understand other people to do that. And those are the starting ingredients. Getting it to fit in with the curriculum. Getting people to appreciate they’re learning something. And we did this with a reflective session where tutors actually looked at the consultation, which is a massive advantage of this medium. Because normally a tutor would have to be in the room to watch an interaction. Essentially based like a [INAUDIBLE], but in teaching session. In this instance, we actually had the text, so tutors were able to review this months after it occurred. And the students couldn’t deny that they’d said something or they missed something.
So when the volunteer or the patient avatar had placed something in text and the students hadn’t picked it up, it could be shown on the screen, and the students couldn’t say, oh, well it did or didn’t happen. So it’s a massive advantage to us to have it on text.
22:25.459 –> 22:26.788
(interviewer) Perfect.
22:26.788 –> 22:27.307
OK.
22:27.307 –> 22:28.015
(interviewer) Yes. It’s perfect.
22:28.710 –> 22:29.600
And you got what you want?
22:29.600 –> 22:29.880
(interviewer) Yeah.
22:29.880 –> 22:30.588
That’s excellent.