We all know about obesity. We can see fatness. Obesity belongs to all of us, and it’s a global problem. Politicians care about obesity. But who cares about blood pressure? Raised blood pressure may be a bigger risk factor for premature death and suffering than obesity, but people don’t see it. Blood pressure belongs to doctors. Well, it’s time for a revolution. The people must claim blood pressure.
Blood pressure has to be measured with a machine. Until recently those machines were found only in hospitals and clinics. They were strange machines filled with mercury, a dangerous substance. Sometimes the doctor would take (note the word, synonyms are capture, steal) your blood pressure, putting a cuff on your arm and inflating it. It was uncomfortable. You’d feel the pressure and your heart beating. The doctor with a stethoscope in his (no sexism intended) ears would stare at the column with numbers on a scale. Eventually he’d let the air out of the cuff. You could hear and feel the deflation.
“Is it normal, doctor?”
“Pretty well.”
“What is it?”
“About 120 over 90.”
“Is that good?”
“It’s good enough.”
Usually that would be the end of the conversation, but sometimes the patient might ask. “What does it mean, 120 over 90? What’s 120? What’s 90? What should it be?” The doctor would attempt an explanation, possibly using the words systolic and diastolic, certainly referring to the pumping of the heart.
Mohammad: Hi Willa! Thanks for your time today. Could you start by giving us a little background about yourself?
Willa: Sure. I’m a registered nurse with multiple degrees. My highest degree is a doctorate in nursing science. To give you a snapshot: I’ve been in health care, specifically in nursing, for 40-45 years. I’m a registered nurse, and have held positions from a staff nurse in critical care to a vice president of patient care information systems. In 2006, I left my vice president position at Sharp HealthCare, an integrated delivery system in San Diego, California, to become a faculty member at San Diego State University, where I am now a tenured professor in the School of Nursing. My nursing background includes clinical nursing, administration, education and research.
I’ve been in Health IT for about 20 years. I’ve worked in a variety of settings, including: hospitals, schools of nursing, and a clinical information system software company. I first became involved in HIMSS when I worked for the software company. My work with HIMSS began as a reviewer for the annual conference. I’ve since served on various committees, and ultimately got elected to the board of directors and then as the chairwoman of the board of directors.
We are pleased to welcome the Great Ormond Street Hospital Inflammatory Bowel Disease team to PKB. They will be using our software to improve care for their patients, as well as build a research registry for the disease.
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.
We recently sat down with Dr. William Yasnoff, a national leader in health informatics, to get his thoughts on the future of Health IT, especially around the critical problem of moving patient data throughout the healthcare ecosystem.
David:
Just to get started, could you walk me through your background and what you focus on now?
Bill:
I’m a physician, and I have a doctoral degree in computer science. More specifically, I’m a computer guy who went to medical school with the idea of applying computers to medicine, and I’ve spent my entire professional career developing large scale, first-of-their-kind health information systems.
I was medical director of AMA/Net at the American Medical Association in the late 80s. This was AMA’s first online electronic information system for physicians. Interestingly, it failed because there was no Internet, and we couldn’t reconcile the variable telecommunications charges with our customers’ desire for a fixed fee, unlimited usage service. We provided reference information, literature, news, etc., for physicians.
I then went on to develop the first successful state immunization registry in the state of Oregon in the 90s, which is still operating successfully today, funded by the Centers for Disease Control. They recruited me to Atlanta, where I spent five years developing the field of public health informatics, including co-editing the textbook in the field and organizing the first national meeting and consensus conference. Then, in 2002, I was called to the Department of Health and Human Services in Washington, DC., to work on national health information infrastructure (NHII) — I was the first full-time Federal official to be involved. With two years of hard work, including organizing a consensus conference around that issue, I was able to push the issue to the President and get the Office of the National Coordinator created in 2004. I then left the government, started my own consulting firm, NHII Advisors, and have been an independent consultant ever since. In 2006, I organized the nonprofit Health Record Banking Alliance to promote the idea of patient-controlled, community-based repositories of electronic health records, as a potentially successful approach to deal with the problem of an effective health information infrastructure, and have been working on that ever since, as well.
David:
That’s quite a fascinating background. So that we can jump straight into my favorite subject–Health IT–I’d like to ask you to walk me through the way you’d characterize the last five years of HIT, the way the landscape is shaping up and where you see it going over the next few years?
We are happy to announce the new PKB mobile App, which we officially unveiled at the March 2013 NHS Innovation Expo.
The Story Behind the App
We noticed that patients were accessing PKB on mobile devices quite frequently and that accessing their health record while travelling was particularly important to them. Similarly, our team heard from some patients with rare conditions that using PKB was the first time they felt safe enough to travel, as they had their full care plans with them at the click of a button and the ability to consult with their specialist while on the road.
These patients, however, were anxious about unreliable internet access, which might mean they couldn’t log in to their account. We always work hard to incorporate the ideas of everyone who uses PKB. In this case, we listened to their feedback and built the mobile App, so they could have a copy of their records stored offline on their cell phone wherever they may be.
The Benefits
Getting test results delivered on a mobile phone means patients can review the data before and after an appointment, so they are better prepared. It also makes sharing and consulting over the results with other clinicians or carers easier and more convenient.
How Can I Get a Copy of the App?
You can download the mobile App from the Google Play store. After you have downloaded the App, you will be asked to provide login credentials to your secure PKB account and create a secure pin, so that only you can access the App. After that, you can download your test results and access the data anywhere, anytime.
Patients Know Best is pleased to announce it has partnered with the Rare Genomics Institute (RGI) and will be working with patients at leading research institutions and academic medical centers around the US.
RGI is a non-profit organization that gives families afflicted by rare genetic disorders access to genome sequencing and expert analysis. They have recruited researchers and clinicians from top research institutions around the world and offer patients access to world-class genomic sequencing and interpretation services. Because patients working with RGI have complex care needs, RGI will use PKB as a secure platform to help them manage their care and connect their clinical, care and genomic analysis team all in one place. To learn more about Rare Genomics, please visit www.raregenomics.org.
Catherine Clapton
David Beyer
Dr Richard Smith
Dr Mohammad Al-Ubaydli
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Olivia Ralston
