Dr Brian Fisher is a GP at Wells Park Surgery, and project executive & clinical lead at PAERS Limited (Patient Access to their Electronic Records System – www.paers.co.uk). He realised that it was important to give patients access to their record and that this would involve solving a number of issues. Brian managed to secure some initial funding to get a project to look at this started. Dr Simon Henley-Castleden was appointed as project manager and funding streams and collaborators were investigated.
PAERS Limited is a small independent company set up by doctors to provide tools for General Practitioners to enhance services for their patients through the use of touch screen kiosk technology. It was established as a company in the summer of 2003, building on the success of Brian’s pilot project providing patients access to their own electronic medical record.
Currently there are two PAERS Kiosks available:
- PAERS Records: ‘A self-contained system which allows patients to access and navigate around their GP electronic medical record autonomously, and which provides them with the information that they need to understand the medical terminology.’
- PAERS Arrivals: ‘A self-contained system which allows patients to independently”Arrive” themselves for an appointment at the practice. The patient is informed of who they are seeing and the approximate wait until their appointment. The practice administrative system is updated to reflect the arrival of the patient.’
Brian presented a ligthning talk at the HealthCamp UK 2008, where he met Mohammad.
Download interview or listen to it
Transcript of interview
Dr. Mohammad Al-Ubaydli: I met you at the conference, but tell me more about who you are and how you got started in all this?
Dr. Brian Fisher: I have been a GP for 35 years and I stopped being a GP a few months ago.
Dr. Mohammad Al-Ubaydli: Oh, okay.
Dr. Brian Fisher: But I have been interested in relationships and power relationships between doctors and patients for a very long time, both at the collective and individual level. I first got involved in the idea of patients having access to their records when I went to my own GP, must be must be 25 years ago or so. When the GP gave me the paper records to my daughter and it just seemed to me such a sensible thing to do that we imported that idea into our practice. The practice that initially did this had stopped doing it a long time ago. I am not quite sure why. So, I have been interested really for over 25 years in the idea of sharing records and what we did initially in the practice was to give people their paper record permission to see them and they could… they were free to look at whatever they wanted to look at and of course, in those days they were handwritten or at least the GP records were handwritten. So, it was not always easy to understand whatever… what was being written there and then when we started going paperless, which was around… we started using a computer in 1990 and gradually got more and more paperless. Then it became obvious that we would have to do something about this record access process to make it available electronically rather than paper based. So, we set up a company and have started making this possible and now it is possible and really EMIS practice, that is 60% of the practices in the UK can now enable their patients to look at their full GP record online. I run the company with two other doctors and one of them is a genius programmer and the other one is an engineer and they work very closely with EMIS, which is the biggest provider of software for primary care in the UK. We are happy and wanted to work with other providers as well. often for a very long time waiting for the
Dr. Mohammad Al-Ubaydli: Wonderful! And so that… when you say is it is available today, would you be getting your money from the people who are using EMIS, paying for the extra service or the GPs fund deployment or …?
Dr. Brian Fisher: No. The current arrangement is that the company has two separate products, both of which depend on the ability to look into the GP system. So, the product that is actually selling is called an arrival kiosk and I don’t know whether you have been to your GP in the last year or so, but an increasing number of practices have a little kiosk as you come into the… little sort of computer screen, as you come into the surgery and instead of queuing up for 10 minutes just to say to the receptionist “Here I am. I have got an appointment.” You just tap on the screen and the system automatically puts you into the system, logs you in to the GP nurse or the nurse knows that you are there and you just sit down. So, you don’t have to queue up. Saves receptionist time, saves patient’s time. It works extremely well. It is done in a number of different languages and we can link it up with health information and so on. So, that’s very popular and that’s selling very well and that’s how we make our money.
Dr. Mohammad Al-Ubaydli: I see.
Dr. Brian Fisher: So that keeps the company well afloat and we share the profits with EMIS. So, they get some income from it as well and that enables us to increasing the extensive work that we are doing on record access and EMIS has been really quite visionary about it. So, they have sunk in you know a lot of thinking time, a lot of programming time, and we had to make this work well. So, they have also been subsidizing prices without any return at the moment. So, from our point of view, we are now at a stage where it becomes important to make it sustainable, that is, we have to find a way of making it pay in some respect, but at the moment, it’s free service to patients, it’s a free service to practices and we certainly if there are other ways of paying for it, we would like to continue that process. We would like it to be free to practice this on for patients.
Dr. Mohammad Al-Ubaydli: Okay. Let’s… let me get to the mechanics of this. My GP surgery I know has EMIS and I don’t know which version of the EMIS they have, but I know that when I am looking over the shoulders of my GP, it looks like the DOS version rather than the Windows version.
Dr. Brian Fisher: Yeah, that’s right.
Dr. Mohammad Al-Ubaydli: That is the older version of EMIS, is that right?
Dr. Brian Fisher: Yeah. The Windows version hasn’t quite seen the light of day properly yet.
Dr. Mohammad Al-Ubaydli: Okay and so, but they have not got a kiosk and so do I ask my GP to get a kiosk that can get this feature or do I ask them to just talk to you and then you will switch on the service for them? What should I tell…?
Dr. Brian Fisher: The kiosk that I described to you is purely for arrival. There is nothing that will allow you to look at your records. It’s just [Inaudible]. If you want to save time at reception, you say to the practice, “Yeah, I would like the kiosk please” [laughter] and they would certainly consider that because they are not expensive and they work very well. However, if you wanted an access to your records, that would… the practice would probably see that as a more daunting question. So, you would be very welcome to go to your GP and say, “You know, I have a long term condition” or “I travel abroad a lot” or “I just would like to have [Inaudible] with access to my records wherever I am, wherever there is a web browser, I would like to be able to look at my records and pull them up” and the GP and you would say to the GP, “I understand that the practice is already able to do this. All you have do is ask EMIS to switch it on.”
Dr. Mohammad Al-Ubaydli: I like it.
Dr. Brian Fisher: So, from a practice’s point of view the technicalities of it, the mechanics of it, are extremely simple.
Dr. Mohammad Al-Ubaydli: Okay. So, it is just a phone call to EMIS saying please switch this on, but once they switch this on, does the practice have to manage what’s my user ID, what’s my password; if I forget my password, I have to call the receptionist. How does all that get done?
Dr. Brian Fisher: Yes. There are two sort of largish areas that the practice would have to think about. One is the sort of administrative aspect. It is actually very simple to register somebody. The whole process takes about – if you have done it a few times, it takes about 45 seconds. These seconds are quite important in general practice.
Dr. Mohammad Al-Ubaydli: Yeah, exactly.
Dr. Brian Fisher: So, it is very… it is actually very easy to authenticate someone. What happens is that they… you put them in the system, they… the system then prints out a set of PINs and passwords that they need. It also prints out a consent form, an information form that the patient has to read, sign to say they are happy with it and the patient also has to invent a password of their own. Then they give that back to reception and then they go off and do record access. So, the persons at reception needs to be organized by the practice. It is not complicated, but it does need to be thought about. So, that’s one area. This is a simple administrative function that is required to authenticate each patient and we think it is important that each patient is individually authenticated for safety and security and I think patients recognize that.
The other area which is what… which I am more concerned about really is sort of cultural issues that are raised by record access. So, our extensive discussions with practices over the last year or so since this has become nationally available makes it very clear that patients are very anxious about record access. So, their major response is to think it is going to take more work. The worried well are going to be taking away a lot of time. It’s going to mean we have to write records differently. It’s going to mean that we have to think differently about whether we would put in say differential diagnosis so if you were to see somebody who had a common symptom, but you nonetheless were slightly concerned that there might be something serious underlying it, conventionally, what you would tend to do would be to write a note to yourself effecting a query connected with the colon or something, so that you would remember that and then you would be aware of it the next time you saw the patient. Well, that would be difficult if you didn’t explain that to the patient. So, doctors have to think about that sort of thing and this sort of background worry.
There are two fears in this background; one is that it will increase litigation. So, patients will look at their record, see all the muddles we make, and end up just suing us.
Another serious and important worry is that in English law, British law, there are aspects of the record that actually patients are not allowed to see and to comply with the law, you have to make sure that those things are not in the record and that’s a worry as well.
Now, for most of these concerns that are all very common and even with enthusiasts there were concerns about these issues. There are fixes and ways around all of them that we can engineer, but the most people will think really is that most of those fears don’t apply at all. So when you look at the evidence in the States, in Kaiser Permanente and in the Veterans Administration, they have been showing millions of patients their records for 5, 10 years now and in fact litigation is reduced. Patients don’t take more time. Records are not written differently. The record remains and should remain a technical document that is meant to improve communication between physicians. It shouldn’t be dumped down to the patient. It needs to be an efficient and technical communication. So, most of these fears don’t happen at all, but the key worry is really about being… making sure that what happens is in accordance with the Data Protection Act, is important and that does need a sort of thinking about from the practice. They do have to think all the time a patient could be reading this and that may mean that they do things slightly different. They have to be more honest or they have to be occasionally clearer about things or something. It depends on the particular doctor, it depends on the particular practice, but we should be doing this anyway. This is what the Data Protection Act says, this is what the GMP advices, this is what the Medical Defence Societies advice as well. So record access doesn’t actually change the situation very much. It is an extension of good practice, but it does mean that for many practices they have to think about it, they have to think about communication slightly differently. [Inaudible].
Dr. Mohammad Al-Ubaydli: Yeah. So, now you have raised a number of issues. Let me start on picking them and look at them one by one. So, the first one and I don’t want to go for the [Inaudible], it sounds like the administrative aspect is, you know, there is a reasonable way to deal with it and it may end up saving time in the long run anyway. So, for example, registration might take 45 seconds to two minutes if you are beginning, but in the long run, it might reduce time spent[Phonetic] at the reception trying to get your test result, that kind of thing.
Dr. Brian Fisher: Yes. In fact, there is evidence from the States that [Inaudible] it does save time and it also to some extent we think improves the outcome as well. So, it is pretty magic bullet really.
Dr. Mohammad Al-Ubaydli: Okay. That’s always nice to hear about, but a much bigger problem is the cultural one and I do like the way that you started the conversation by saying that you have been interested in power[Phonetic]what it is, the[Phonetic] issue that is going on here. [Voice Cross Over]. So let’s not go into this [Inaudible] study. Now, I have been in the States for the last few years and one of the interesting comments that I heard was that the reason that the Supreme Court is the most respected branch of the government relative to the Presidency, the Executive or the Legislature is the Supreme Court is still the only body that meets in private. So, you don’t see the deliberations and that is why the American public still respects the Supreme Court and in fact the more they see of their politicians, the less they respect them. So, that was one attitude now. I then mentioned about it to another American and he was furious. He was saying, “No. You must have open government. You must have transparency” and I agree with him by the way. I think that more transparency does need to be [Inaudible] , but let’s try and pick that. What would you say to a doctor who is worried that the more they see of what I write then the more I will leave myself open to problems? relationships between doctors and patients for a long time. So, I think there is… this is
Dr. Brian Fisher: Okay. It depends which problems you are talking about, but the most worrying problems would be I suppose litigation really.
Dr. Mohammad Al-Ubaydli: And I love these [Inaudible] you mentioned the Kaiser and the VA; millions have been seeing records, but actually litigations had went down, is that correct?
Dr. Brian Fisher: Yes.
Dr. Mohammad Al-Ubaydli: Is there a paper somewhere that we can look at that [Voice Cross Over]?
Dr. Brian Fisher: There is a… I have drawn that[Phonetic] from someone who visited Kaiser and they were told by Kaiser just recently and I also had a similar piece of information from a presentation at the Veterans. So, I know that both Veterans and the Kaiser have had that experience. To my knowledge, I haven’t seen a paper.
Dr. Mohammad Al-Ubaydli: That’s okay.
Dr. Brian Fisher: But this is an internal evaluation I think that they have done.
Dr. Mohammad Al-Ubaydli: Are you talking about the Veterans or the Kaiser [Voice Cross Over]?
Dr. Brian Fisher: Both; I think [Voice Cross Over] the same.
Dr. Mohammad Al-Ubaydli: The Power Point presentation that you have; is it an internal document or…?
Dr. Brian Fisher: I can … the Veterans Administration is available. The Kaiser is not; they have asked me to check with them if I release anything when I wanted to do that recently and checked with them and they never came back to me. So, I can’t release the Kaiser one, but I can release a single slide which a colleague having been to Kaiser has written, but [Inaudible] just says what I have just told you.
Dr. Mohammad Al-Ubaydli: That’s okay. One of the things we can do after the podcast by the way is when you start saying, there is a paper or there is a presentation and after the podcast, I am just going to get some of these documents from you that you are actually able to share; the private stuff of course not, but tell me… if you give me the Veterans presentation for example, we can actually embed that presentation into the podcast itself. So, if somebody [Inaudible] mentioned a bit of evidence, it’s right at the end of transcript so that I can read it[Phonetic].
Dr. Brian Fisher: Fantastic, okay.
Dr. Mohammad Al-Ubaydli: Okay? So, that’s one side which is that… and the VA is very good to look at because the VA is a government funded healthcare system just like the NHS; that is a very nice analogue and they are undergoing the same kind of time pressures that the NHS has. They don’t want the worried well taking away time from the sickest of the patients. A lot of the same queries that people would have at[Phonetic] NHS would apply to the VA, but millions of patients have been through that and it has been quite successful. Yeah, okay, it’s wonderful. Let’s go to the British law aspect of what part of the record is not allowed to be seen. Could you explain that in more detail?
Dr. Brian Fisher: Yes. So, the Data Protection Act says that there are two exclusions, one is patients are… people are not allowed to see data about them that the doctor thinks will cause them severe harm or cause severe harm to somebody else, severe of course is not defined. So… but it does have to be severe. I mean if you cut out, if you choose to cut out something… I am sorry, can I just backtrack a little bit? The DPA, these exclusions are in relation to something called a subject access request. What that means is the current situation before electronics [Inaudible] access was available is that if you want to look at your records, you go to your GP and the GP can charge you 10 pounds and has to get your records to you within I think two weeks and in that two weeks they have the opportunity to scan the records and exclude these two things that I am going to tell you about. So, the DPA specifically refers to subject access request and the two exclusions are, one I just told you would be a harm and the other things are rather subtle and is about third party information. You are not allowed to see third party information if the giver of that information wants that identity concealed. So, the example is if a wife comes to me and says the husband is drinking, but I don’t want you to reveal that I have said this to you, I have a legal duty to put that information in the husband’s record because it maybe important to his future health; so, I need to put into the record I have heard that the husband… I am told that the husband is drinking. Discuss next time or something like that, but in that particular situation I must not reveal the wife’s identity. If I do reveal the wife’s identity, wife says husband is drinking, husband accesses his records in six month’s time, I can be sued for that.
Dr. Mohammad Al-Ubaydli: Yes.
Dr. Brian Fisher: Is that clear?
Dr. Mohammad Al-Ubaydli: Yes.
Dr. Brian Fisher: There is no… no third party information can be revealed. It’s that… if the person wants their identity protected, then that has to be protected.
Dr. Mohammad Al-Ubaydli: So let’s talk about best practices and what we are talking about here is that regardless of electronic access by patients to the medical record, at any moment, any patient can pay 10 pounds and request their record and you then have two weeks in which to scramble to scrub out any information that would have been confidential? Is that…?
Dr. Brian Fisher: No. [Voice Cross Over]. There are two… just those two exclusions, severe harm [Voice Cross Over] and the identity of third party [Voice Cross Over].
Dr. Mohammad Al-Ubaydli: Yes, that’s what I meant by the confidential part. So, you have two weeks to exclude those two items. They have to scramble and go through all the records and make sure that you have not submitted anything that’s outside, that’s within those two exclusions and so it is far better to have written in the notes correctly that I am told that the patient… that the husband is drinking and than to have written about the wife and then to be scrambling to find the sentence about the wife to remove it; is that correct?
Dr. Brian Fisher: [Voice Cross Over] exactly got it and the DPA has been around now for 20 years or so. We should all be writing with those things in mind, but we don’t because the conditions are not [Inaudible].
Dr. Mohammad Al-Ubaydli: Sure, right and I am glad it’s that way around, but let’s see… I want to be able to get someone who is listening to this a sort of five bullet points, this is what you need to do the next time. So, a simple tip like you put “I am told that the husband is drinking” rather than “Wife came in today and told me the husband is drinking” and tips like that. Is there some way that we can give those sort of five bullet points or a short article about this?
Dr. Brian Fisher: There is a long article. [laughter]
Dr. Mohammad Al-Ubaydli: Okay.
Dr. Brian Fisher: What we have done is write… well, there are two things actually. There is a long article where we have written a set of guidelines onto the record access collaborative program, which has been endorsed by the DNC[Phonetic] Information Commissioner and Medical Defence Societies and that is going to go through the assurance[Phonetic] process. It will be assured[Phonetic] or will be finalized in many months time. They have got a long document there. It must be 50 pages or so. That’s available. I am waiting to release that for the people to comment on it and to think about it as long as people know it is a draft and it is still has to be assured[Phonetic].
Dr. Mohammad Al-Ubaydli: Could we put that onto the wiki [phonetic]?
Dr. Brian Fisher: I would be very happy to do that.
Dr. Mohammad Al-Ubaydli: Yeah. Okay.
Dr. Brian Fisher: There is also a shorter thing, which is advice we give to practices [Inaudible], which is much briefer and has some of the photodocuments[Phonetic] that people need when they are setting up for doing this. Let’s make it as easy for them as possible and that’s much shorter and so that could go as well. I think that could go as well.
Dr. Mohammad Al-Ubaydli: Wonderful. So, I will follow up with you about the references and the copies of the Veteran, but… and we will put the long version onto the Wiki with plenty of warning that this has not been assured[Phonetic] yet, but giving people [Inaudible] and then the shorter version, you are putting… would be happy putting that and that would be available for anyone to redistribute and include copyrights… without any copyright problems; is that correct?
Dr. Brian Fisher: I think it is. Yes. I think that is correct, yeah.
Dr. Mohammad Al-Ubaydli: Okay. You can double check afterwards, but we can go through that. Okay. That’s nice. Now, we have got some good best practices for someone who can do things. So, really the discussion isn’t should you do patient access? It’s patients already have access. Should you decide to make them to take advantage of the benefits of electronic access or not? But patients definitely have access and you need to be writing the notes everyday on the assumption they will be accessing.
Dr. Brian Fisher: Yeah.
Dr. Mohammad Al-Ubaydli: Okay. I am going to ask about some of the benefits in a second. I still want to go back to what you mentioned. You are interested in the power[Phonetic] relationship between doctors and patients. Could you talk about your interest in that thing? Some of the things you have been doing in the last few years before setting up the company electronic record access?
Dr. Brian Fisher: Okay, well, I am interested in a number of different levels and the way I think about it is the individual level and the collective level. It has always seemed to me the right thing to do is to give people as much information as they want in order to enable them to share decision making with their doctors and then commissions[Phonetic] generally though it seems [Phonetic] kind of right and sensible, but amazingly enough in the last 10 years, there has been a tsunami of evidence that shows that not only is this a sort of morally good thing to do, it actually makes huge sense from a health point of view as well. So, at the collective level, I have an interest in how local populations can influence the design, development of improved systems of care. So, how patients with heart disease could improve the way we deliver care for heart disease, how patients in a practice could have influence over the policy developments of the practice, and I have been very interested in the idea of community development, which is a technique that has been running for 50 years really in developing countries, and has been kind of exported to the West in the last 10 or 15 years or so perhaps and I have been very interested in that as an approach to not only to giving people a say in local services, but also in bringing people together, so generally community elements[Phonetic] goes out to places like the [Inaudible] or pubs and clubs and talk to people, bring people together, and help them to think more about their health, but in the process of bringing people together, you are developing social networks and the evidence for the health protected nature[Phonetic] of social networks is really substantial now. So, it looks for instance that if you have links with other people be that friends, clubs, then you are likely to live longer. You halve your risk of death in the next year[Phonetic] if you belong to… if you have social networks. If you don’t, if you have fewer of those, then your risk of death is higher, almost as powerful as stopping smoking. So, these are really big issues to me… things to me and I have been very interested in promoting the idea of community development, particularly in PCP land and I think finally after 20 years of thinking about it, that is now getting into Department of Health thinking, so it also links with Health Inequalities, it links with social cohesion. It’s a bridge really between PCPs and local [Inaudible] and so on. So, that area is fertile ground really it seems to me for both health improvement and local involvement.
Dr. Mohammad Al-Ubaydli: [Voice Cross Over] So, that’s fascinating. I remember when I did my house jobs, I… part of that was working with the GP and one of the interesting things was one of the GP surgeries locally setup an obesity group and they pointed the group… they initially just… [Inaudible] by Alcoholics Anonymous, so there would be a weekly meeting and they would just discuss their issues, but the idea was for them to help each other with weight loss. What was interesting though is that it soon changed from a weekly meeting to help each other lose weight to the patients just wanted to be around each other, just a social aspect, the social network of working together was very important. Now, I have to say that the… the story the way it was told to me was, actually they stopped trying to lose weight and they just hung around each other because they decided that there were lots of normal people who were overweight, [laughter] but apart from that side effect, I am intrigued by you saying that having that social network halves the risk of death; that it is almost as powerful as stopping smoking. Could you… is there a paper that was published about this?
Dr. Brian Fisher: There is a lot of information about it. Yes, I can give you books and books and books on this now.
Dr. Mohammad Al-Ubaydli: [laughs] Okay.
Dr. Brian Fisher: So yes, the best, the book that set people’s imagination going around this is it’s quite famous now in these kind of circles called Bowling Alone.
Dr. Mohammad Al-Ubaydli: Oh yes.
Dr. Brian Fisher: By Putnam.
Dr. Mohammad Al-Ubaydli: Yes.
Dr. Brian Fisher: So this is an analysis of America; nothing to do with Europe and it is a casual analysis which shows, well just what I said already, that if you have links, links to people are disappearing in the US and that has implications for a whole range of misuse[Phonetic] including health, that’s including crime and economic recovery and so forth as well[Phonetic]. So, this idea of people meeting with[Phonetic] each other, trusting each other is a sort of central glue that holds society together and makes the society as one of the features that makes society healthy.
Dr. Mohammad Al-Ubaydli: I can [Inaudible]. So, I read Bowling Alone a couple of years ago and most of it is from what I remember is was basically Putnam lamenting the breakdown and the… well, people used to bowl together. That was the point of the title[Phonetic], but just lamenting the group activities. Now what was interesting is because he continues to write about this topic and it’s usually in a lamenting tone, but I was interested by is actually is it that people stopped bowling together or is it that they still do things together; they are just not called bowling, they are called being on Facebook or they are doing things online together and so the question is could GPs be taking advantage of the social network tools on behalf of their patients as a new opportunity as opposed to just mourning the loss of existing activity that we used to do.
Dr. Brian Fisher: Absolutely. I think that’s… yes I think the point is what most people have taken from Bowling Alone is not [Inaudible] what it says, but what can we do to make a difference given that we seem[Phonetic] to be quite important aspects of health and life. There were some indications that it can be done electronically, but I don’t have a lot of evidence about it. So, what I do know is there was a study which gave elderly, housebound people computers, it must be 10 years ago I think… no, no, it can’t be that long ago, but anyway, a few years ago, gave a computer, 20 minutes of instruction about how to go online, and just left them to it, monitoring with that commission[Phonetic] what websites they looked at when they were using the computer and so on. What they found was that these older people who were completely unschooled in IT started using this enormously. I mean they don’t… they don’t sleep very well. So, they are up at 2 or 3 in the morning tip-tapping[Phonetic] away across the world and it made a huge difference to their lives. It reduced their pressure. It made them feel more engaged with the rest of the world and it was a very positive experience with very little outlay. I have patients I know who started writing blogs and things just as part of their own kind of therapy maybe [Phonetic] and it’s made a huge difference. So, I think there are all opportunities here. I just don’t… I don’t know how useful it will turn out to be, but I think it should be explored and in fact as part of this work in the records I spoke to Connecting For Health[Phonetic] and they are quite interested in pursuing this. So, I think you know I would welcome further thinking about it.
Dr. Mohammad Al-Ubaydli: Interesting. If we think about how much it costs to give somebody a computer and access, we will be looking at [Inaudible] companies for example, for 30 or 40 pounds a month, they give you a computer with Internet access and so, let’s say it’s 40 pounds a month, then if you could reduce a patient’s depression for 40 pounds a month, [Voice Cross Over] that’s easily worth it. Right?
Dr. Brian Fisher: I don’t think it quite works like that. [laughs]. It’s one of the factors that would make a difference.
Dr. Mohammad Al-Ubaydli: Yeah. No, absolutely [Voice Cross Over], but it attempts to… [Inaudible], especially because the people, the problem is that often when you are sick, let’s say sort of everything happened at the same time, so you are sick, so you can’t work, you can’t earn money [Voice Cross Over]
Dr. Brian Fisher: Sure. Absolutely right yeah.
Dr. Mohammad Al-Ubaydli: And so the people who most need this technology are also the ones least able to afford it and to deploy it.
Dr. Brian Fisher: Yes, yeah.
Dr. Mohammad Al-Ubaydli: Okay. I know that there is a website in the States called patientslikeme.com. I don’t know if you have seen it, but it’s a thriving community [Voice Cross Over].
Dr. Brian Fisher: [Voice Cross Over] I haven’t checked it out yet.
Dr. Mohammad Al-Ubaydli: It’s getting a lot of buzz. What’s interesting about it is that patients declare certain things about themselves and then they cluster in certain patient communities and it’s not that your record is available for everybody to see; it is that you make statements. So, I am a… you say “I am a diabetic” if you feel like it and then you say “These are my sugar test results from the last few days,” because you wanted to, but when the patients start comparing each other’s test results, when they start comparing each other’s treatment and start sharing tips on “Well, I find switching to this food does this” or when they start participating in research trials because they are all in the same patient community, something very powerful begins to happen. This is only in the USA as far as I understand, but I just wonder what could be done in the UK from a set of current diseased population[Phonetic].
Dr. Brian Fisher: Well, I think it is definitely worth pursuing and there are lots as you know, I am sure lots of patient communities now, so, it is not all that difficult to find diabetics through Diabetes UK or through patients.co.uk. So you can get conversations with other people a bit like you. What I don’t know is whether those kind of things happen as you [Inaudible], but probably they do and… [Voice Cross Over]
Dr. Mohammad Al-Ubaydli: What’s interesting is what happens when you go above a certain critical match of [Inaudible] and people working by themselves just agreeing to congregate and aggregate in a particular place as… so patientslikeme just try to do that kind of aggregation in the USA. So to me what’s interesting is when those patients congregate, they provide, even for rare diseases, orphan diseases, they provide that community for the researches and the commissions who are trying to advance to the next phase and just because you have a bulk of people even for something that’s rare, you concentrate them all in one go.
Dr. Brian Fisher: Absolutely. No. Absolutely you can see the advantage and the benefits and the potential disbenefits of both [laughter] [Inaudible] you have no idea what the… you know do you know if there is any research [Inaudible] and the outcome?
Dr. Mohammad Al-Ubaydli: I don’t know. The only research I tend to know about is that what actual researches have benefited from having access to these communities [Voice Cross Over] and that it’s just very easy to find trial subject, it’s very easy to demonstrate aggregated demand for pharmaceuticals companies to make investments or even to provide lobbying so that you can say that we would like extension to the patent period for an orphan drug [Voice Cross Over] because it’s [Voice Cross Over] the patients care about, but there is not many enough patients for the traditional 17 years of a drug [Inaudible]. But I am not aware of well actually what happens if you go online so much and you are making use of these communities, what’s the side effect of doing that.
Dr. Brian Fisher: Okay, well. Sounds like a good trial to do[Phonetic] [Voice Cross Over].
Dr. Mohammad Al-Ubaydli: I can say. One of the things I am happy to do with the wiki and the podcast is just, as these bits of information filter in, we just have a single [Inaudible] place that when you ask this question in a year’s time, I will be able to just point and say “Oh, just that page is where we put something about that.”
Dr. Brian Fisher: Okay, very good.
Dr. Mohammad Al-Ubaydli: Right. I think we have come to the end of the podcast. Let me just ask what do people worry about that they should not when they use these things as far as you know and what should people worry about that they current don’t? More than… I think you discussed some of the common things that people worry about and you have got a lot of literature on how to dismiss that, but what people worry about that they don’t come… [Inaudible], but actually because of your experience you think, “Ah, that’s the way you are going to get into trouble.”
Dr. Brian Fisher: Good question. I have… patients… we haven’t talked about patients very much. We talked about information[Phonetic]. Patients worry about taking responsibility and I think that is a real worry. Patients… I mean it is a worry for them; not a worry for me, but it is a worry you know that they are looking at this and it’s kind of involved them in having more choices and that’s a concern in a way maybe for some people. Patients do worry that this is not [Inaudible]. So, again we have spoken to patients who say this isn’t my record, this is a doctor’s record and I shouldn’t be messing about with it really. Patients sometimes go into it and then find that there is stuff in that that they… that upsets them. So, this is not severe harm, but this is upset. So, it might be that they had forgotten they had a termination 30 years ago. So, that sort of thing and we know that patients with psychiatric problems have more upset looking at their records than patients without psychiatric problems.
Dr. Mohammad Al-Ubaydli: Actually, I wanted to ask you, the psychiatric problems especially, how do you find what should be shared, what should not be shared? And if the…?
Dr. Brian Fisher: Well, my point is that there is no should about it. [laughter]
Dr. Mohammad Al-Ubaydli: Yes.
Dr. Brian Fisher: The DPA is clear about what shouldn’t be shared and that’s what we need to think really.
Dr. Mohammad Al-Ubaydli: [Voice Cross Over] role of psychiatric diagnosis, those psychiatric patients still has full access, full rights to everything they find.
Dr. Brian Fisher: Yeah, they do and [Voice Cross Over] unless you feel they could be severe harm[Phonetic] [Inaudible] them. I mean our experience as I have been sharing with people records for over 25 years and we have censored nothing in that time. We are full general practice. We have… we now have 9000 patients. You know we have a full range of people [Inaudible] and the restriction we have had occasionally is to give people information at the time of our choosing. So, it maybe that you get a chest x-ray that shows a cancer of the lung, which you had not anticipated and well, you don’t really want the patient to see that in the middle of the night. So, you obviously contact them, you don’t let them look at that x-ray until you have spoken to them first. [Voice Cross Over] So, there are some aspects of that and the actual system safeguards against that. In fact, so it is not possible for somebody to see terrible results without the commission[Phonetic] having seen it first, but… so that’s an issue. You know you have to, so that there might be occasions when you would want to figure out the timing, but our experience and that the same in the[Phonetic] States is that really aren’t any restrictions that you could generalize about. You can’t say no psychiatric patients, you can’t say no people with [Inaudible] to people who got depression, it just doesn’t seem to work that way and shouldn’t work that way, but without particular[Phonetic] system, the GP can’t choose who to give record access to and the patients can’t choose whether they want record access or not. So, there is a freedom in that. That answer your question?.
Dr. Mohammad Al-Ubaydli: Yes, it does. I am just… a lot of things you are saying, I am typing it down as you speak. So when you are talking about the severe, sorry, the critical diagnosis that is being released in the middle of the night, just so we get those details, so the hospitals example might have done a test on the patient on request of the GP and that test result does go electronically from the hospital to EMIS of the GP and that same EMIS system does send the information electronically on the web to the patients should they log onto the website next time.
Dr. Brian Fisher: No. It will only allow the test results once the commission has okayed it. [Phonetic]
Dr. Mohammad Al-Ubaydli: Correct. So, one by one they are commission [Phonetic] okay’s it . So how does that, how do you make sure that commission[Phonetic] isn’t spending a lot of time okaying routine [Inaudible].
Dr. Brian Fisher: We have to do it anyway. I mean it goes into a holding place in the EMIS record and it won’t get into the record until the commission [Phonetic] Inaudible]. The commission[Phonetic] has to look at every single test result, so you know that’s just kind of routine really. What is interesting in the record access is that if you, there is an option, which obviously most all commissions[Phonetic] use, which enables you to comment on the test and it’s meant to be there really for… to allow the commission[Phonetic] to see, but it is extremely useful as a very brief way of communicating with the patient. So test results are really quite complicated [Inaudible] sometimes, so just because it is abnormal it doesn’t mean you have to do anything about it, and sometimes if it is normal, it means you do have to do something about it, just depends on the context. So, it’s also very helpful to be able to put a comment saying that this is abnormal, but don’t worry, let’s repeat in two months and if it’s normal to say you, no need to do a cystoscopy or something and so it is a very… it is a way of communicating and keeping people in the loop and understanding what’s going on, but the basic thing about the test results is that in the system it is just not possible for the patients to look at them until the doctor has. However, I have been assaulted by lots of people who say to me that it is highly patronizing and we shouldn’t engineer the system this way. We should engineer it in such a way that patients could have access without the doctor having to look at it, and I think in some practices naturally it[Phonetic] takes a little while for the doctors to look at the results, so there is a delaying there which the patients don’t like. So, we think that in our particular system probably what we will do is to engineer it so the patient can have a choice, that if they want to look at the raw data without a GP comments, without a GP haven’t seen it, then they can as long as they realize that [Inaudible] situations it could be quite scary.
Dr. Mohammad Al-Ubaydli: You had mentioned two other ways that [Inaudible] being done in the USA[Phonetic], so one of them and they very much depend on the local culture, so this might not be appropriate for a GP setting, but in a country center in Texas, which is a large test referring[Phonetic] center, referral center, even before electronic medical records, medical notes were always kept next to the patient’s bed.
Dr. Brian Fisher: Okay, yes.
Dr. Mohammad Al-Ubaydli: So at any moment, even in the middle of the night, the patient was always able to look at the records and it was built on a culture of transparency that the patient has cancer, it’s a serious disease, and they should always be empowered to understand what’s going on and nobody is going to hide any information from them.
Dr. Brian Fisher: Good, yes.
Dr. Mohammad Al-Ubaydli: And so when they made the online testing house record[Phonetic] version, everything went there anyway. Obviously the patients appreciated having accommodation with that physician, but it was always important the patient gets access to the record instantly. They knew they had a serious disease. They weren’t going to be any surprises about, “Oh, I do have cancer.” The second approach is in Vanderbilt University Medical Center [phonetic], and there they did a triage of test results. So, on one end is test results which are pretty quite routine[Phonetic], so if you are diabetic and it is a sugar measurement, tests just go to you instantly or Hb A1c that it’s neutral and there should be no delay and the other end is something like an HIV diagnosis, which you need to have a discussion with your physician about rather than finding out online about it and then in the middle there are grey areas, where for example you could be tested for a biopsy for a tumor to find out what’s going on and that… they would like the physician to discuss it with you; however, what’s done is that… there is a two week delay; if the physician looks at it within two weeks and okays it, great. If they don’t for any reason, for example the physician is on holiday or they forgot or just the workload, then the patient gets the result anyway after two weeks and that sort of… it’s a buffer against being lost in the system. I don’t know how that applies to the NHS or GPs, but it is just… I mean we don’t want the test results until[Phonetic] [Inaudible] the hospital, but that’s kind of interesting authentic models[Phonetic].
Dr. Brian Fisher: Yes, absolutely. That’s right[Phonetic]. Thank you. [Inaudible].
Dr. Mohammad Al-Ubaydli: I will see what I can really [Inaudible], but I did in the States I wrote a book about this.
Dr. Brian Fisher: Oh, really? [laughs] [Inaudible]
Dr. Mohammad Al-Ubaydli: But unfortunately I don’t own the copyrights of the book, but I can find the original references in which that people discuss things with me and then I can, I want to put that onto the wiki gradually basically. So, I would really like to do a second podcast with you that’s for patients. So the patients can now begin signing up or thinking about doing this kind of thing. What good habits should they know about, what things should they worry about, and what should they do with their GP.
Dr. Brian Fisher: Very good.
Dr. Mohammad Al-Ubaydli: I will get in touch with you if you don’t mind just about arranging the second one, but this particular interview has been really helpful to me and I am… thank you very much for your time.
Dr. Brian Fisher: That’s a great pleasure and an honor to have done it.