Giving patients control of their own medical records and putting them at the centre of their own healthcare management makes sense for patients, for clinicians and for healthcare institutions wishing to improve the bottom line. In creating Patients Know Best, the world’s first patient-controlled medical records system, I have met a number of inspiring people. One doctor I met in 2006 taught me a very valuable lesson about why patients should be put back in charge.
A doctor’s story
This US-based doctor told me a story about a patient of his who had come to his surgery with chest pains. In order to rule out serious heart problems, he sent the patient for a full body (CT) scan. When he received the patient’s results – one in a large pile of many – the top line summary did not have the diagnosis he was worried about. Understandably, the doctor moved on.
However, at that particular time, that same doctor was experimenting with giving his patients access to their medical records. The patient had been given a copy of his CT results too – not something that would normally happen. “What is a thyroid?” the patient emailed the doctor, “Why are you asking?” came the response. “Because the last line on the report says I have a ‘shadowing on the thyroid’.” Instantly the doctor knew what the radiologist had been trying to warn him about – the possibility of thyroid cancer. An urgent biopsy confirmed early stage cancer but it was caught before it could develop further. In this case, giving the patient his medical results had quite possibly saved his life.
The patient as an ‘asset’
From that day onwards, the doctor began asking all his patients to look at their medical records. The doctor was not unusual in making a mistake – all doctors are human, so all of them make mistakes. Rather he was unusual in considering all patients to be ‘assets’ in their own healthcare management. Each patient needs to be consulted and made use of wisely – collaboratively – when dealing with medical problems. In this particular case, the patient had far more time than the doctor to dig into the detail of his results. I know that to this date, this particular doctor doesn’t feel safe practicing if his patients haven’t had access to their full records. As a matter of course, this doctor routinely asks his patients to look at reports with him. He considers the patient to be an essential part of his or her own care – a principle and a value that lies at the heart of Patients Know Best.
Over the following year I learned that the only way to bring together all of the data about the patient, from across all the teams that look after them, is if the patient is in control of his or her own medical records. This is not something that is simply ‘nice to have.’ Rather, giving patients back control is a means for clinicians and medical authorities across the world to solve many of the intractable problems they currently face – such as workload, safety and importantly, the ever-increasing cost of care.
The doctor’s dilemma
To think about how the NHS and medical institutions can benefit from giving patients back control of their medical records, let’s look a doctor’s typical working day.
In a modern hospital, a doctor’s day normally consists of a long list of tasks and constant interruptions. During the day, she’ll have a stream of pages from nurses in clinics and wards asking for input. There are calls from patients and their relatives; some asking questions, some requiring an update on treatment. She will also have calls coming in from other hospitals, health providers and GP surgeries with lab results piling up on her desk. She’ll also have to remember to chase a range of organisations for information and be expected to remember the specific condition of each patient in detail.
Of course, doctors are highly trained people and expect to be kept busy. However, with the explosion of medical knowledge, it long ago became unrealistic for clinicians to keep abreast of all this information and data. The only way to cope is through specialisation, which has led to many of the great achievements of modern medicine but it has also led to each clinician knowing more and more about less and less of each patient. For every condition, multiple treatments and solutions exist. Every year, the quantity of medical solutions increases and so does their complexity – placing a huge burden on the already over-stretched clinician.
The solution isn’t for the NHS to simply employ more doctors and nurses. Specialisation means that this problem will only ever keep increasing. The solution is to give patients control of their records and to change to a system where patient and doctor come together to decide on a course of action – to change from paternalistic medicine, where the doctor is ‘in charge’, to participatory medicine, a more collaborative approach.
We find that when patients or a patients’ families are given control of their medical records, they start managing the doctor’s work for them. They become like the doctor’s eyes and ears because they are receiving information continuously and they are the ones with the close personal interest in the patient’s wellbeing. They will tell the doctor what’s going on with a patient, saving the doctor’s time. They will come to the doctor with information about what treatments worked in the past for this particular patient, and what other specialists have been advising. They will guide a doctor to make the right decisions so the burden of a person’s entire healthcare is not placed only with one individual.
Handing over control
For example, a typical patient with intestinal failure – often a very complex condition involving multiple clinical teams – normally has his blood tests taken locally by his GP or local hospital. However, it is the ‘lead’ intestinal failure specialist at the teaching hospital who interprets and acts on these test results.
This means that the specialist must spend time chasing local hospitals for results – by phone or email – a time-consuming and error-prone process. Then, when the results arrive with the specialist, she must spend time interpreting the data and planning a course of action. She might have to tell the patient’s home healthcare provider – which operates outside the NHS firewall – what new or different medication to send the patient. That company might then have to contact the patient to organise delivery. However, if the patient had control of his medical records he could decide which organisations or clinicians could access it. Information would flow far more smoothly and crucially, the doctor’s valuable time would be saved – all saving the NHS money.
I’m living proof that handing back control to patients can save the time of clinicians and NHS money. I have a very rare – one in a million – genetic disorder that means that I have regular injections of antibodies to ensure that I can recover from illnesses if I become sick.
Throughout my childhood I used to spend a day every month in hospital with clinicians administering courses of antibody injections to me. Every month a team of doctors and nurses would have to look after me. Every month I would take up a bed for a day. Every month I would have to take a day off school, causing my family inconvenience and severely restricting my independence and freedom.
However, I am so grateful that my doctors trained me to inject myself with my antibody treatment. Now I can inject myself at home or at the weekend, when I’m working or travelling – whenever it suits me. The home injections take just one hour, once a week and I can even do it whilst walking around.
Of course, this training also dramatically reduced the cost of treating me. Today, I only have to visit my immunologist once every six months and this will probably reduce to once a year over time. By training me and trusting me, my doctors gave me back my independence, saved their own time and saved significant amounts of money for the NHS – and there are scores of other patients with similarly complex conditions who would benefit from doctors handing over control of their healthcare back to them. Complex conditions are common: 30 million patients in the USA and Western Europe have a rare condition.
St Mark’s Hospital patient Jason Murtagh has a conditioncalled Visceral Myopathy, a highly rare chronic disease which means that his gut fails to properly absorb nutrients – indeed the condition is so rare that few gastroenterologists will encounter a case in their careers.
Diagnosed in 1988, Jason’s disease involves him being reliant on a line that administers nutrients directly into his heart – a process that Jason has been trained to administer himself via aseptic technique.
Jason is cared for by the UK’s two national Intestinal Failure Units (IFUs) – St Mark’s Hospital and Harrow and Hope Hospital, Salford – as well as regionally by a small but knowledgeable clinical nutrition team at Russells Hall Hospital, West Midlands.
Jason’s treatment involves the coordination of several expert clinical and medical care teams in different geographical locations. A process that since April 2012 has been made easier, due to the adoption by St Mark’s of Patients Know Best, the world’s first online patient-controlled medical records system.
Operating like a secure medical Facebook and available over any internet-ready device, Patients Know Best enables the patient to decide which medical professionals can have access to their medical history. It allows patients to communicate directly with clinicians via a highly secure messaging system and through a notice board facility where issues can be discussed collaboratively between patient and the medical teams – teams that could exist anywhere in the world.
“Before, long emails used to fly around with lots of people copied in. Sometimes people would forget to copy in others, other times emails would just get lost,” explains Jason. “With Patients Know Best, everyone is kept in the loop and we can bounce ideas off each other – and I can join in the discussion too. Potentially, using Patients Know Best is going to minimise the time I have to spend going to consultations and meetings. I’m already spending less time having to explain background information and what’s been going on since my last consultation because we’re all up to speed.”
Jason also values being able to post up thoughts and queries to Patients Know Best when they occur to him – when he’s on the move – rather than saving up questions for a meeting or email.
“Patients Know Best suits me because I can access it on my normal smart phone or computer – I don’t need any special equipment. If I’m out somewhere and I think of something, I can just upload my thought and I’ll probably have a response when I get back home. Patients Know Best offers a non-intrusive way of asking questions or putting forward a comment or suggestion, and for my doctors it means that they don’t have to spend time answering emails or phone calls. You can raise things that you might think are not serious enough to raise in a consultation and I feel more confident putting forward my theories on why I’m feeling a certain way on a certain day. I know doctors find that kind of information useful but it’s not normally the kind of thing I would have brought up in a meeting when time’s short.”
Patients Know Best also enables patients to record and track their condition and post results up immediately – giving clinicians a view as to how a patient is living with his or her condition over time. For example, Jason posts up daily readings of his blood levels so all his doctors can access the results and discuss issues between themselves.
“Before I may have sent an email with my results to one doctor but for one reason or another, that message might not have reached anyone else. Now I can post my results up and know that everyone involved in my care can see my results and can see how my condition is progressing and reacting to different treatments.”
Whilst Jason already scans all his medical outpatient notes and letters and uploads them to Patients Know Best, St Marks is now planning to do the same with all of Jason’s future notes. This means that going forward, every doctor or medical professional involved in his care can see the information – a process saving clinicians’ precious time and the NHS money, paper and postage.
One of the side effects of Jason’s condition is that he often experiences problems in other areas of the body such as the pancreas, liver and kidneys. He also must consult with highly specialist heart and chest surgeons to ensure his nutrient line is operating effectively. Whilst Jason normally works through St Mark’s – as they have an advanced knowledge of his underlying condition – it still involves him having to consult a range of clinicians who are most likely treating a Visceral Myopothy patient for the first time. However, Patients Know Best now gives him the confidence and reassurance he needs that doctors can access his full medical history – wherever he might be.
“Very few doctors properly understand my condition so going to an unfamiliar medical team can be terrifying. I can have a severe and potentially life threatening reaction to everyday drugs. With Patients Know Best, it’s very reassuring that I can reach my entire medical team anywhere in the world – this makes me feel far more independent. Through Patients Know Best, I’m effectively carrying my entire medical history with me wherever I go in the world – and that’s very reassuring.”
Jason’s doctor, Dr Simon Gabe, consultant gastroenterologist at St Mark’s Hospital said: “This is a very real development for patient care and it’s interesting to see how excited patients are about using Patients Know Best. The ability for them to give easy access to their medical records, treatment plans and also to be able to ask questions to the medical team gives them a sense of security. It also allows us to engage with patients as well as GPs and other medical carers, to the benefit of each patient.”
About Patients Know Best
Patients Know Best is the world’s first patient-controlled medical records system. It is a fully secure online tool that enables patients to better organise, manage and control their own health care provision. It also saves the time of physicians through allowing secure, online consultations. Founded by Dr. Mohammad Al-Ubaydli, a Cambridgetrained physician, programmer and author of seven books on IT in healthcare, Patients Know Best has won awards for its focus on patient care. Patients Know Best’s first customers include Great Ormond Street Hospital, St Mark’s Hospital, NHS South Devon, Novartis and Alkaptonuria Society. Patients Know Best integrates fully into the NHS secure network and is available for use by any patient with any clinician, anywhere in the world. Patients Know Best complies fully with UK NHS and data protection requirements as well as the EU data protection act and US HIPAA legislation for dealing with medical data. Patients Know Best is a social enterprise business and Dr. Al-Ubaydli is an Ashoka Fellow.