Patients Know Best was recently featured on You and Yours, Radio 4’s consumer affairs programme. The segment began with Jason Murtagh, a patient with a complex condition who uses PKB to manage his care, describing how PKB software helps him link up his care team and communicate with them about his condition.
This was followed by a short discussion between our CEO, Dr. Mohammad Al-Ubaydli, and Dr. Pallavi Bradshaw, a medicolegal advisor at the Medical Protection Society.
I’d like to briefly highlight some of the points Dr. Bradshaw raised during the segment. Her first concern was around security of patient data and confidentiality.
We believe that putting patients in control of their records actually makes things more secure. Doctors frequently need to share patient data with other providers, or even social workers or other carers, but aren’t sure if they can (and they always have to ask the patient). If the patient controls the record, they can invite those individuals in to the same spot and consent for them to effectively communicate and coordinate care. A patient-controlled medical record also means that if a patient has an acute problem or goes to A&E, the right person at the point of care has access to relevant and timely information.
Dr. Bradshaw further alluded to the so-called digital divide in mentioning that internet access hasn’t spread to every household in the UK. The facts, however, tell a different story. The UK is a global leader when it comes to digital access and it’s growing very quickly by the day, even among older populations. We recently wrote a post about just this issue, available here.
Mohammad and Dr. Bradshaw also covered the distinction between medical language, the kind that doctors use to communicate between themselves and the kind of plain English that doctors can use to educate patients about their health.
Patients Know Best enables both. Doctors should absolutely communicate with each other using professional medical language. Patients Know Best, however, also makes it possible to share information with the patient in a fashion they can understand and act upon. Our software, for example, automatically annotates lab results with explanations from the Royal College of Pathologists, as to what your doctor might be thinking if your test results are too high or too low. This means the patient can come prepared for their visit.
Another of Dr. Bradshaw’s points worth highlighting is the claim that giving patients their records somehow neglects those who are most vulnerable, the elderly and those with extremely complex conditions.
This claim misses the point. The status quo, in fact, is quite dangerous, particularly for these more vulnerable populations. Their records tend to be scattered across different institutions and silos, which leads to duplication and (sometimes grave) errors. Further, their care teams frequently have a hard time coordinating with each other on important medical decisions. Putting these patients in control of their records and allowing their care team to link up in one place enables safer, more efficient care.
We like to say that we give patients the benefit of control without the burden of control. So even if a patient, who might be elderly or without internet access, is unable to login to Patients Know Best directly, the fact that they’ve consented for their care team to be on PKB and communicate with each other is a huge leap towards improving the quality of the care they receive.
Here is the full transcript.
Julian Worricker: By 2015, every GP surgery in England will have to give patients access to their medical records. It’s a move that could change the relationship between patients and doctors, but already a website called Patients Know Best has started to help people to see and take control of their notes. It was developed for people with complex medical conditions, to help them keep track of their records and to bring together the health professionals who were treating them.
Jason Murtagh from Birmingham has a rare intestinal condition and has to attend various hospitals across the UK, including some St. Marks in London and Salford Royal. He’s been using Patients Know Best for a year.
Jason: My lead consultant at St. Marks felt that it would be really beneficial to me, because I’ve always had tried to carry copies of my notes; this way’s just easier. It’s more immediate, it’s just collated everything together in one secure site. Clinical care exists over several centers for me. I’ve got doctors looking after me in several hospitals because the condition has, over the years, caused complications which need other specialists to be involved. If I’m going to see a consultant whose expertise in a certain area that they are familiar with, then it’s really helpful to have information to hand, to show the new consultant, if you like, any information that he needs to have to sort of deal with the problems that I’ve gone to see him about.
Last October I had a … it basically turned out to be pneumonia, which is bad enough for anybody but in my complicated by the fact I have to have intravenous antibiotics, regardless of the level of pneumonia. Initially, I wasn’t sure whether it was flu. So after a few days, I posted a question on PKB and sent it to all my consultants, my GP, everybody. Just some advice and basically within a half an hour I had one of the care team from St. Marks get to me and say, “It could be flu but we need to get some blood checks.” Basically within a day, my GP came out to see me; I was off to the local hospital. They knew what was going on, they knew what St. Marks had recommended and they knew what my GP had found when he came to see me. Everybody knew everything before I got there.
Subsequently two weeks later, when I came home, the consultants in Russell Hall had already posted on PKB my discharge notes.
Julian: At the moment only 61 practices in England offer online access to their medical records. It’s Patients Know Best, the way forward. The site was founded by Dr. Mohammad Al-Ubaydli, who also has a background in medical software. Good afternoon.
Dr Al-Ubaydli: Good afternoon.
Julian: Why did you start this site?
Dr. Al-Ubaydli: I started just to solve my own problems to be honest with you. I’ve got, like Jason; I have a rare condition myself. I went to medical school and trained as a programmer, so I’m basically a geek. I wrote six books about using IT in Health Care. One of them was about how do you get patients access to medical records. Just given my experience, as a patient, with a rare condition where I had to teach everybody who’s looking after me what the others had been teaching me.
I thought it would be very useful, if I could have my record and I could share it with everyone. I literally wrote the book about how to do it, but then was frustrated and everyone was doing this. You mention the 61 GP practices; I thought if I wanted this to spread, I’d have to start it myself. It turned out there are millions of people, all over the world, who have the same difficulty. It’s just making it available to those patients and their clinical teams.
Julian: If I was to log on, what would I see? How would I use it?
Dr. Al-Ubaydli: Well, for the patients, actually then, I tried to in old day to train them. They wouldn’t let me. They would take it out of my hands and say, “Oh this looks like Facebook.” I would say, “Yes, you can add a friend, add a doctor, you can’t poke your doctor. It’s the same idea of building your medical team around your condition.” It also shows you all your medical records, which has been explained to you in plain English. You don’t just get a number of your lab results. It explains to you what that word means and then if you’re low or high, it explains to you, according to the Royal College of Pathologists, what they want their patient to know about their low or high blood result.
It allows you to look at all your record, understand it and then build your whole medical team around it.
Julian: Let me bring another view in on this because listening to you is a Dr. Pallavi Bradshaw, a medico legal adviser, at the Medical Protection Society. What do you think of this?
Dr. Bradshaw: I think in principal, it’s a fantastic idea. MPS is certainly, along with our members, is supportive of patients having more control over information about themselves in order to be able make decisions. There are however, some concerns that we have surrounding online access. First security issues, obviously ensuring that there isn’t any breaches of confidentiality, the fact that this may not be so wide spread as originally hoped, given that 5.2 million of households in the UK don’t even have internet access. Often it’s the most vulnerable people who require more information about their health care and also to have conversations between their multi-disciplinary team.
Something else, that Dr. Mohammad has just touched upon is that, having to explain things in plain English, whilst that is an ideal; if you just think about medical students, in their first year of medical school learn 10,000 new words; doctors communicate with each other and with other health care professional’s using medical terminology on a day to day basis and I think we mustn’t lose sight of the fact that the medical record is there primarily to assist doctors in the multi-disciplinary team to give the treatment and continuity of care. Adding that extra layer of having to write things in a way that patients would understand may of course increase the burden.
Julian: I’ll come back to that in a moment because it’s an interesting point. What about the security issues, Mohammad Al-Ubaydli, how do you deal with that?
Dr. Al-Ubaydli: A lot of the doctors actually like it because it solves security issues. For example, your GP will naturally share your records with a hospital team or an A&E department for the safety of the patient, but I don’t always sure can they share with a social worker or community nurse. They have to check with their patient every single time. What they find is, if they give the control over the access to the patient, someone like Jason for example, the first thing that he does is he joins up his local team, with his London team, with his nursing team. He carries it with him, wherever he goes. It tends to solve the security issues of inappropriate access, as well as solving the security issues of, does the right person have the information they need to treat someone like Jason, when they come to see him in A&E?
Julian: What about that language issue that was also raised by Pallavi Bradshaw?
Dr. Al-Ubaydli: We get a lot of this from clinicians who initially concerned; they want to focus on delivering the right care for the patient in the fastest way. We explain there two things by the medical language. The medical language that is standard you carry on using, you should not change in anyway what you do for the patient. When I was talking about explanations, I automated this software, can translate what is in clinical jargon into English … as plain English that you and I can understand. Then there’s the abbreviations, which are ambiguous, so two specialists may use two abbreviations to mean two different things. Those ones, we actually say, you shouldn’t use abbreviations. That wouldn’t just help the patient, that would help the whole multiple disciplinary care team that would often get confused by ambiguities, so solved those ambiguities but don’t translate the rest the language.
Julian: I’m back to you, Pallavi Bradshaw on that. I suppose when we look forward to 2015, when all GP practices in England have to give patients online access to their medical records, you could argue that this is surely an incentive to those doctors to be more clear and concise so that patients do know what they’re saying about them.
Dr. Bradshaw: No absolutely, I think that there’s always that risk that doctors aren’t clear in the way that they explain things. Hopefully, this may assist in that sort of breakdown in communication, but ultimately, certain people like Jason, obviously is very educated about his condition and is very interested. As I say, a lot of the people but will be benefiting from this, for example the elderly, children with multiple complex conditions, may not be in the same position to be able to appreciate a lot of what is written. It’s really about training doctors and patients to understand what is in the medical record.
Julian: Thank you both very much for coming on, Dr. Mohammad Al-Ubaydli and Dr. Pallavi Bradshaw.