2010.06.29 What patients want

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Dr. Mohammad Al-Ubaydli:   

It's a pleasure being here today. My name is Mohammad. I am the CEO and Founder of Patients Know Best. And I have been asked, why don't you come and speak about What Patients Want. And see if you can find the Mel Gibson reference in that title.

But the idea basically is to present my research on what patients have wanted from more modern healthcare system. And I say this as someone who has spent a few years in the USA, worked with 2,700 hospitals, and I just asked them, what are you doing with the patients online? I learned a lot of things from them, but I thought I could -- the best, large country in the world to apply them is actually England, not the USA.

So I want to walk you quickly through just quick introduction about myself and then we will go through what the implications are from my research in the UK.

So I trained as a doctor and a programmer, so I am basically a geek, and then I also spent a few years in the USA doing research on what healthcare systems and patients are doing.

But I am also a patient myself. So I have a long-term condition, and my doctors have spent, apart from saving my life, have spent a lot of time getting me independent. So they have taught me how to inject myself with a needle, even though I had a needle phobia. They taught me how to inject myself at home once every week rather than have to come to the hospital, which meant I was well enough that I could go to medical school or go on a holiday and just become independent.

They were able to give me all of those things. The one thing they couldn't give me is my medical record. And I have even had people in the healthcare system tell me, they can't give me the medical record because of Data Protection Act. And I tried to explain that the Data Protection Act is to protect them from getting my record, not for me getting my record.

But this was the frustration they faced. They wanted to give me everything they could, but the record they couldn't.

So I built a company called Patients Know Best, and the idea is basically to work within the NHS, so it's available for any NHS condition, but to also integrate with anything the private sector or the patient or the relatives wants to use.

So the first customers that we have include GP surgeries like Ramsey Health Center, who want to use it for online consultation with NHS patients. And London Medical, Harley Street, which wants to work with patients from all over the world.

And then you get people in the private sector like Bupa, who share patients with hospitals like Great Ormond Street Hospital, and they couldn't share the data because technically one is inside, one is outside the NHS, and legally how do you document the patients that you can share the data.

So we just say to them, both of you give the data to the patient, patient gives it back to both of you, and then you can do care safely and at a much lower cost, and the patient is getting a much better service. That's basically the company.

Here is what I will cover today. So I will go through some basic definitions and then I will go through what I think patient wants. And then I will show you some of the innovations that patients have me doing when they go and do what they want. Like PatientsLikeMe, which I mentioned earlier. And then I am just going to spend a few minutes discussing what the implications are for the NHS as we go into multichannel.

So basic definitions. You have got the clinicians looking after the patient and the patient. And the clinicians use things like Electronic Patient Records, which are basically software for clinicians to work with each other for the patient.

Then you have something like a Patient Portal, which was what my research was about in the USA. And these are the four things that patients really want when they deal with a particular healthcare system online.

So you can do the -- so if we go back to Jill's example of what she wants from her GP. She wants to be able to schedule an appointment, order a prescription refill, send some messages back and forth, and access her records.

    But the Patient Portal approach is fundamentally about, this is a tool that exposes the clinician's internal data to the patient, and the patient must go and access another tool for another team and they just end up with lots of websites, because they are cared for by multiple institutions.

So for me -- as I was sort of finishing off the research in 2008, this sort of headline caught my eye, which is, NHS staff had announced they had upgraded their secure email to 200 megabytes. And I was using Google with 6,000 megabytes, and I thought the user interface was better, and it was free.

So I started thinking, well, why are we trying to do Patient Portals when actually the patients have much better tools themselves they use, that are not just cheaper, they are actually higher quality.

So the Markle Foundation, working with the U.S. Connecting for Health, not the Connecting for Health in the NHS, came up with a definition for the personal health record, and the fundamental property is that it's controlled by the patient and then it interfaces with everyone else that the patient works with, whether it's the NHS GP surgery, or the NHS in general, or the private practitioner, or their relatives, or the social workers, anyone the patient chooses.

(00:04:59)

So what do patients want? Just on the idea of just using what the patients have. So when I started as a junior doctor I kind of was obsessed with handheld computers. I was so obsessed I even wrote one for chefs, just to teach them how to use it.

But the thing that I found was that, our phones on the ward were more sophisticated than the pager system, and they were a lower price, and actually we could set up a network amongst each other to share encrypted data amongst the doctors for handovers, that was safer, and everyone could do within their personal budget. Whereas, I would have to wait a really long time to get the hospital to buy a single centralized system for everyone. We could just build something ourselves that was much better.

And the patients have these mobile phones. There are more mobile phones in the UK than there are people. They are using them for every aspect of their lives. And if you look at, the NHS has already begun using for their appointments, for example.

But if you look at clinics that have begun sending test results about STD tests, Sexually Transmitted Disease tests, and if they ask the patient, do you want us to send you the result as an SMS or do you want us to call you? And more than 90% of the patient say, I would like you tell me as an SMS.

And if you compare -- if the result is negative by the way, you just tell them it's negative and they are done. If it's positive, you don't tell them through a text message, you tell them, please call the hospital.

But if you compare how long it takes for a response from the patient when you say please call, and a voicemail that says please call, they are saying, literally, the minute I have sent a text message, my phone starts ringing, because the patient gets the message and calls back saying, what was the positive test report?

So patients have these mobile phones that are incredibly sophisticated, which we ought to be using. They also have video conferencing. It’s been around for years with Skype. So the biggest feature request that we had when he had online consultation of Patients Know Best was, the doctors and the patients saying, I want to do a video conference on Skype. So we are adding that in August.

They have this already, it's in all these homes, and it's available in high fidelity video conferencing.
The observation I have about Gmail is that, it's much bigger and with a much better user interface. And then if you look at something like Facebook, so this is back when they had about $300 million of investment, and more than 300 million users. And they were basically exchanging more megabytes of photographs each minute than trying to send out 60 million x-rays every minute.

So right now this is exchanging more data at a lower cost than any national healthcare program is capable of doing for a PACS system, for example.

So why aren't we using this? Let me show you some of the tools that patients end up using if you look at a healthcare domain.

So as I already mentioned, PatientsLikeMe. So if you go to PatientsLikeMe, you can find a number of patients from the UK, who went to an American website and published all their HIV medical records, for anyone to look at.

And the fundamental point they are making is that, for that personal clinical safety, they get better treatment if everyone can see their record than if no one can see their record.

Now, I disagree with that. I think part of the reason they are doing that is they are not being given the tools within their healthcare system to share the data safety. But basically, beyond a certain amount of illness, the danger to your health is that the person who needs to know your health doesn’t get the record. And that actually if you get other patients looking at your data and they are saying, well, my doctor does it this way, you get a leveling up of care as patients begin to understand what the best care is and make those suggestions back to their clinical team.

This is a website called RareShare, and there are European analogous websites coming along. Because basically, if you look at rare diseases, often the people who know the most about the illness are actually the patients. There are few clinicians who are experts on the disease around the world, and actually even those clinicians, there are such a small number of patients, they are actually relying on the patient to tell them, what happened when I gave you this medication, what's the real world way in which this medication works?

So they go on these websites, and I basically, in my new book, I recommend to doctors, just go on the website that learn from the patient. Not to go on the websites that can teach the patient what they should be going. Go and watch what they are doing and learn from them and teach your clinical team about it.

And then you have websites like 23andMe. So these ones, for a $1,000 you can send them a sample. They will sequence it and they will begin to give you interpretations.

Now, at the moment they are limited by -- it's quite a high price, $1,000, and actually the inferences you can make from genomic sequences are not very useful. Most of the advice they tell you, by the way, is to exercise more and lose weight. You don't need a $1,000 test to tell you that.

(00:10:06)

But they are getting more sophisticated and the important point is that, the sequencing costs are improving at Moore's Law. So every 18 months the price drops by half. And the analysis of the software improves by Moore's Law as well. So every 18 months it doubles in the quality of advice that it gives you.

So in other words, in 15 years time, this cost will cost $1, and the patients will have a 1,000 times better advice on the website.

Now, the main point I want to make is, medical schools do not improve -- they don't double in quality every 18 months. So these patients in 15 years are better at genetics than any medical school can possibly produce.

So the advice is, actually when the patient comes to you with these printouts from these websites, which are actually quite nicely explaining things, in a way that your medical school public heath professor never explained. Read it. It's actually quite useful for you and it will be very appropriate for you to understand what's going on.

So how should healthcare systems adapt given that? So for us the idea was basically, if you center all the data around the patient and share it with everyone else; inside the NHS, outside the NHS, inside of healthcare, outside of healthcare, and in particular, the patient begins to bring in their relatives, who for technical and legal reasons have not been allowed to participate.

So the example I give is, if I call my GP surgery to ask for my wife's test result, they won't give it to me, because I am obviously not my wife. But if any women, knows my wife's date of birth, calls the surgery, she will get the test result.

And the reason that they do that is, basically they have to check, was their consent and are you the patient's representative. But they also can't actually reliably document for a long time with the consent.

But if you start with something like a system that has the patient's data, and which the patient began using through showing the photo ID and a consent form. And then the patients says, I give this patient access until I revoke their access. Then you have a technical solution and a legal solution to involving everyone the patient wants to involve.

So what does that mean? I think we should switch from how the clinicians are managing the patients, to how the patients are managing the clinicians.

My experience as a patient with a rare disease is that, my doctors are basically asking me, what should we do next? And the reason they ask me is, it wasn't because I was a doctor, it's just that I was the only person who turned up to all the appointments.

So they asked me a month ago what happened, a year ago when you had this infection -- this is what happened yesterday, by the way, I went to the GP, because I have a cold, and I said, 18 months ago I had this infection and this antibiotic didn't work and this one does work, so do you have that antibiotic? The GP said, thank you very much, let me prescribe if for you right now. It was just easier for everyone, and she could see everything in the records anyway.

But it's not just rare diseases. So rare disease is not actually as rare as people think. In aggregate, there are 30 million people in Western Europe and USA who have a rare disease, and actually, even supposedly a common disease like diabetes, you tend to have diabetes with something else, in a particularly unique way, and another social circumstance that affects it, and still when you go to your doctor or nurse, they still ought to ask you, what happened the last time?

Because they have only got six minutes with you or ten minutes and they have got a stack of notes and it's too complicated for them to understand in that short space of time. What they need to do is ask you what happened and the patient will help them. If the patient also has access to the tools, that can be helpful.

The second thing is that mass customizations should be going forth. So Nigel already mentioned that it will be great if healthcare system was in the industrial age, but we want to get to the information age, it’s the next one.

And the key is, the assumption in industrial approaches is that, the custom thing is expensive and error prone, because you haven't got a machine doing it.

Actually, if you look at something like Dell, where they start building the machine the minute you choose your own unique combination on the website. They build it at the lower cost and a higher quality than their competitors.

And Toyota does the same thing. For them, their motto is that quality is free. That actually if they build the custom car in a system that assumes mass customization, they do so at a lower price and a higher quality.

So in healthcare what we are seeing is a move between paternalistic medicine, where the doctor tells you what to do, and in theory that you do what they told you to do, to participatory medicine, where the patient is part of the team that's coming up with the solution, the relatives are part of the team, everyone the patient finds useful is part of the team.

So they are providing the custom information that means that you deliver much safer care, at a much lower cost, than if you are trying to manage everyone with the same protocol.

This is not about consumerization, where everyone, quite rightly, worries in a socialized approach to medicine, where you want to treat as many people in the best way. People worry that if you go to consumerization, you are given the most expensive treatments, just because somebody asked for them.

15:21 as research shows and as a Director is that there is an ethical way; if you explain to the patient what's going on, they will often want the more conservative approach, but they just need the tools to understand that. And if you give them those tools, they will get the customized care, that's a lower price, and a higher quality.

So with that, thank you very much for inviting me. And I will say at the end, because I mentioned this last week in NHS Confederation, if anyone today wants to help a doctor by telling them about Patients Know Best, and if they mention NHS Confederation, we will give them a free account and they can start doing this tomorrow with their patients.

Thank you very much.