Interview with Dr. Mohammad Al-Ubaydli, recorded by Dr. David Kibbe on 29 August 2008.
David Kibbe: Welcome, this is David Kibbe, Dr. David Kibbe, and you are listening to the first of our podcasts on the InterHealth Network. My guest today is Mohammad Al-Ubaydli who is the founder of a new web portal for patients known as Patients Know Best. Mohammad, thank you for being our first interview.
Mohammad Al-Ubaydli: Glad to be so, thank you.
DK: I’ve known you for several years. I know a little bit about your background as a physician, I know a little bit about your background as an informaticist, why don’t you give us a short overview of your career so far?
MAU: I went to medical school about 10-15 years by now. I graduated in 2000. When I first went to medical school, the thing that interested me was the use of computer science – chaos science – because the body is full of chaotic systems. But soon after getting into the hospital problems – actual chaos rather than chaos science – that could be improved by someone knowing a little bit of IT. And so I just began doing lots of projects helping people with computer problems that then improved patient care.
I guess the common thread through everything that I have been doing is that I like a technology that helps people in low cost commitment and really gets lots of people collaborating.
So the first thing I started with was just mobile computers. Just using Personal Digital Assistants and convincing every physician I worked with to just buy it out of pocket and then just working together and beaming information back and forth. And so that just really helped with handovers in the hospital.
The next thing is open source software because it is easy to install it and you get something that really supports collaboration across different institutions. The thing that grabbed me over the last couple of years, and this is where you and I have been working a lot quite closely is the advent of personal health records. There have been a number of developments in the last few years that mean that the investment for a patient of physician to use this is reasonably low. The common platform that are around really allow collaboration. This means that in the next 10 years there are tools that could really change how clinicians and patients interact. And I just find that very interesting.
DK: You know, you’re one of a growing number of physician informaticists. I hate that term. Physician technologists is maybe a better word: physicians who have gone through their training and become involved with computers, computer science, information technology. Do you feel like you are part of a larger group of physicians, and if so, how do you interact with those other doctors?
MAU: I do. I was lucky enough that even from medical school I was able to have senior people from that group help me out and mentor me. So through medical school I just joined the UK Health Informatics Society <LINK> and I have been on the Executive Committee <LINK> since then.
And then when I came to the States of course the thing I looked forward to was the American Medical Informatics Association. It is the largest in the world, really well established. It is interesting to see AMIA in this space because they were trying to create the same residency career path as there is for doing any other specialty in healthcare.
When I finished training in the UK, there was not that infrastructure. I will say that one of the reasons that I left the UK at the time that I did is that the UK was just beginning to implement those kinds of reforms and that kind of career path for informaticians. But whenever you get to that stage of really big changes I just predicted that the first few years it was going to be done incorrectly. So I thought I would just go to the States for a few years and lay low for a while and just join AMIA and then come back. And sure enough, coming back, there is that career infrastructure, there is that community of people working together.
DK: So you’ve been in the United States and now you’ve returned to England and of course collaboration can be international fairly easy at this point. I would be interested in your summary about the development of information technology in the United States over the past few years that you have been there. As you know there is some controversy about whether or not government policy with respect to information technology has been very wise or even productive or not. What is your take on the direction the United States has taken?
MAU: There are a number of things the USA does that are different to how other countries do things. And they have been really interesting for me to watch.
The first thing, in contrast to the UK – and the UK had computers in healthcare for many decades just the same as the USA but the UK was about family physician offices. That’s where the adoption around 2002 was about 95% of physicians’ offices had it. Whereas in the USA it is only the hospitals that have the capital necessary for the investments. And then of course you find this in the larger hospitals, the academic medical centers. So the USA has had the investment come from large hospitals rather than physicians’ offices and then the physicians’ offices get grandfathered by getting included in the hospital network. But you get that initial fragmentation, or regionalism, in the USA.
The second thing that I have been interested by in the USA is how the attempt to get a national network has been going. The UK in 2002 decided that there would be a doubling of health care IT investment and they would divide the country into five regions and every region would have a big monopoly contractor. They had a full – I believe troublesome – but at least they had a plan of exactly how everything was done and be done and who would be doing it. Whereas the USA could not do that. But I think that is a strength in that the USA tried to begin by providing the correct incentives and a common framework and then unleash market forces to allow that collaboration to happen.
Now the downside is that there are quite a few competitive inhibitions to sharing information. And I think – and you know far more about this than I do – that has stopped the integration happening as quickly as I would have liked, both as a physician, and as someone who would have been a physician in the USA.
Now what is really exciting is the personal health records development.
DK: Well let’s go there, let’s talk about that, I want to know more about what you are actually working on now with Patients Know Best. Can you give us an idea of what you are trying to accomplish?
MAU: The idea is to provide an open source project whereby physicians around the world can collaborate on creating tools so the patient really does understand their illness. And you really want the patients to know best about what is happening.
The main problem – apart from the patient is ill, and they are too ill to know what is going on – is that even when they can take control of their healthcare, or they have a relative who can be informed, the information about their illness is just not that actionable. So I want the project to give the same decision support as the physician has in their head of when they look at their test result, what does it actually mean for the patient? And then the fact that it is open source, I would do a few diseases by myself, working with a few people at UCL in London, but it creates a framework that anyone can say “Mohammad has done diabetes, but I am really interested in HIV, or whatever, so I am going to create the HIV version of the Patients Know Best open source personal health record”.
The reason that personal health records are an interesting transformation – and by the way for part of this I am quoting you, you have been very educational to me over the last couple of years – is that the USA has bypassed the problem of centralization by saying: You know what, if we just give the data to the patient then the patient can shuffle it around the system and overcome all the barriers between institutions. So it actually allows the USA to leapfrog the rest of the world where in the rest of the world a centralized, government-led system allows integration. By taking the individualistic approach in the USA, I think that actually creates even more integration than if you tried to do a single top-down large integration system.
DK: We I would agree with you. I think that has almost happened as the only alternative given that most of the very powerful incumbent and traditional healthcare data holders have all thought of themselves as the big enchilada in the middle and it’s really made it impossible for anybody to centralize data in the United States. So I hope you’re right in that that pathway which has become sort of the only pathway in the United States helps – make the individual keeper, guarder or his or her own health information – I hope that works.
And I want to pursue something that you said. It seems to me that you’re thinking about Patients Know Best as a personal health record that is in some way actionable. In other words you are not just thinking about static information that is available for access but you want people to be able to use that information to learn or act or do something. Can you – I am not sure that everybody else would agree that personal health records do that. Could you elaborate on that a little bit?
MAU: Yes. So the current iteration of health records that you see from Google Health and Microsoft HealthVault are really about: Here is a copy of what the physician wrote about you, or what the lab found out in your test results. And that’s good, that’s a big development. The project that I am discussing builds on top of that platform. So I am not going to be discussing an alternative to Google Health or Microsoft HealthVault, I am talking about an open source project that relies on that foundation of Here is a copy of your data.
The next level is, well, you know, when your physician looks at your data, they don’t even, it’s not just that they look at this test result and they say “it’s abnormal”. It’s easy to give you the abnormal values. It’s actually, they look at these 3 or 4 test results and in combination with your diagnosis, they make the following inference. And that’s the kind of thinking you want to embed in the software.
So the first iteration of the software is going to be both the software side and the embedding of that knowledge and understanding in the user interface of the software. So the first iteration is basically me working in UCL medical school and we’re going to start with just the medical students and we’re going to grab a bunch of open source information from NIH – public health guidelines that are in the public domain – or in the UK it is the National Institutes of Clinical Excellent, we’re just going to grab all those guidelines and then we put them on the wiki in a way that can be embedded in a software user interface. And then that becomes the knowledge base for the personal health record of diabetes, and also will expand horizontally into lots of other diseases as other contribute to the wiki.
DK: Are you utilizing the CCR standard?
MAU: Yes. Both Microsoft and Google both support the CCR. Microsoft also supports CCD. CCR is the one to go for, it’s gotten lots of support from health care institutions and it’s simple enough to understand and compute on. It’s the standard that I prefer. And I believe you have been one of the founders of the standard yourself.
DK: Yes, indeed, and we’re always interested in how people are using it. So, I think I get the picture here. Who else do you foresee that you might be collaborating with with respect to open source software. Who would be the logical programmers and developers, interested parties for content that you would hope to attract to Patients Know Best?
MAU: The first iteration, the thing that would really get people to attach to it is one or two proven projects. So I’m actually reaching out now to CXOs in hospitals in the UK and USA and I’ve got a couple in the USA and a couple in the UK. So if we run a development with them, if we say OK, your diabetic patients, I’m going to do a trial with you whereby we put that information and we allow them to understand their illness at the same time as sending information back to their physician so they don’t have to just rely on the paper record, as usually incomplete or incorrect source. When you get that kind of success, then you’ll got other programmers and others interested in other diseases interested. But if you are asking Who can contribute today? There are a couple of ways that they can take part. And it depends on how fanatical they are about this.
So the first thing is that we have a social network which is network.patientsknowbest.com.
DK: Let’s get that again: it’s network.patientsknowbest.com?
MAU: Exactly. That’s a social network for anyone interested in personal health records in any way. So whether you are working on a proprietary system or a system that doesn’t use Google Health or Microsoft HealthVault or the CCR, if you have the slightest interest in personal health records and you are based anywhere in the world you should join that social network. Because it just means that you can connect with other programmers, clinicians, managers, investors, people who are working in this field.
The second thing is wiki.patientsknowbest.com. And that’s going to be the knowledge base about people’s understanding of personal health records. That’s going to be filled with case studies of what people are doing, where we explain what the different websites can’t do, what the technologies we can build on, there’s going to be code dumps, every bit of information that I or others find is helpful for developing personal health records, that’s going to be available there.
The other two parts are the ones that I am working on now at UCL. One of them is going to be the knowledge base that provides the decision support system and if anyone would like to take part in that I can send them a private invitation. And then the second part is nutritional information. So I’m starting a global attempt to grab all the nutritional information on packaged food and include the barcodes. So the patient can just start putting in the barcode and say Oh, I ate one pack, or half a pack or whatever. And that’s going to be coming on nutrition.patientsknowbest.com in a couple of months’ time. But the idea there is if you ate something then just put it down. And then somebody else can use that information when they are trying to document what they ate.
DK: Super. So it seems to me that you are really moving the bar here or whatever the appropriate term is, advancing the personal health record, by making the information more useful to the person, to the individual, and as you say making it actionable.
MAU: Yeah. I’d really like this to be a community effort. So you have people like Google and Microsoft who have done tremendous work in terms of easing the barriers to someone building their own product, but not everyone has quite realized that this change has happened. And so the idea is to build a community where people can understand that and they can contribute to each other’s successes because of the work they have already done.
DK: Wonderful. Well, it’s been a real pleasure talking with you today and I want to wish you all the best with Patients Know Best. I’m excited about it and I hope to be one of the members of the community. May be you can give us one more time the way in which people can get connected and become part of the community.
MAU: Yes. The easiest way is just to go to the main website, that’s http://www.patientsknowbest.com. And patients is plural. And from there you will get the wiki, the knowledge base, the social network and of course there will be our celebrity blogger, podcaster, Dr. David Kibbe on there as well.
DK: Well Mohammad it’s been a pleasure, are you going to be coming over to the United States anytime soon?
MAU: Yeah, I should be working with a couple of hospitals there so I’ll be coming back and forth a lot.
DK: Good, well I hope to see you, and perhaps I’ll get a chance to get over to Great Britain as well.
MAU: I was going to say, I’d like to arrange for that, I think the work you’ve been doing on the CCR is really important for here in the UK so we’ll get that figured out somehow.
DK: Great, well thank you very much.
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