Mohammad Al-Ubaydli is reducing the cost of healthcare, improving patient health outcomes, and reinventing doctor-patient communication. Through Patients Know Best, Mohammad’s technology platform allows patients to securely view their medical records and share their information with other doctors and family members, giving individual patients easy access to and control over their medical data.
A nova ideia
Patients Know Best provides individual patient’s access to and control over their individual medical records by providing clinicians and healthcare organizations with a platform to securely communicate and collaborate with patients and to deliver coordinated care. It is the world’s first patient-centered medical records system and is still the only one integrated into the U.K.’s National Health Service (NHS) secure network for use by any patient with any clinician in the U.K. or overseas. By increasing the flow of information to the person with the greatest stake in a successful outcome—the patient—Mohammed believes that the unnecessary use of the healthcare system will be reduced and overall care will improve. Mohammed’s goal is to make patients more active participants at the center of their care, rather than simply passive recipients, which will over the long-term increase the quality and reduce the costs of the healthcare system.
Patients Know Best empowers patients by making them the central foci of their healthcare. It enables patients and clinicians to send messages securely, to conduct consultations online and via Skype, to enter and view test results, to keep and view a patient diary and to upload and view important medical files. Patients can grant access to all their clinicians, providing a single patient view instantly, without duplication or re-entry of patient records. In addition to sharing their data with their medical team, patients can opt to allow key relatives and caregivers to have access to their record so that they can be kept updated. They can also choose to share their data with patient charities who are looking to carry out medical research or pharmaceutical companies who are looking to carry out trials. For the patients, Mohammad has focused on providing the right information to improve management of care, as well as information to help patients interpret the data. Moreover, the information is encrypted so that only the patient can access their data and only the patient can decide who else they would like to share that data with. For hospitals and insurers, he is focused on demonstrating significant cost saving by reducing unneeded care and mistakes.
As a long-term patient and a doctor himself, Mohammad saw the potential for Patients Know Best to impact the health system from personal experience. He designed the platform with the intention that it would one day scale to accommodate huge user numbers and therefore made sure that it was compliant with both EU and U.S. data protection legislation so that it could be used worldwide. Currently Patients Know Best is being used by departments in Great Ormond Street Hospital, the U.K.’s largest children’s hospital, Novartis, a pharmaceutical company, to conduct medical research, and UCL Hospital, the U.K.’s leading asthma care centre. Others have tried to centralize patients’ medical records through technological platforms, but Mohammad’s approach is different because he is fundamentally trying to shift more authority and responsibility to patients through the flow of information. His approach is beginning to show an impact on the complicated healthcare system, because it is tailored to the interests of each of the key stakeholders.
There are around 17.5 million people in the U.K. with at least one long-term condition such as asthma or diabetes. These numbers are only expected to increase, as are the number of patients with two or more conditions. As healthcare becomes increasingly specialized, with more and more patients suffering from chronic conditions, it is essential that anybody looking after these patients can quickly check that person’s current status and medical history. A large number of patients with long-term conditions are taking multiple drugs and have multiple test results at any one time. With this type of medicine good records are essential to provide good care.
However, most medical records are fragmented, incomplete, scattered and generally inaccessible to the person who has the most vested interest in seeing them: the patient. Every different hospital that a patient has ever visited will have a separate record of their admission. A patient’s general practitioner (GP) will also have an electronic record but this is separate from the hospital’s records, duplicating work and introducing independent errors. The patient’s practice might have old paper copies of previous test results and consultations but they will not be instantly accessible. This means that the current system of multiple, disorganized and often unavailable records is hugely inefficient. Furthermore, as clinicians are frequently pressed for time, medical records can end up being littered with mistakes. These can be simple mistakes such as the spelling of the patient’s name or the wrong date of birth to more serious errors such as the patient’s blood type or omissions about their allergies. Because the patient cannot see their record without asking for a copy, which is very difficult to get hold of, these mistakes often go unnoticed until a breach of care is made.
As a long-term trend, the cost of healthcare in all countries, including the U.K., continues to rise; healthcare providers must find ways to deliver care more efficiently. It is estimated that 20 to 25 percent of medical consultations do not need to take place face-to-face and even in real-time. In addition, patients are increasingly demanding to be able to communicate with their clinicians and manage their health online, as they do in all other areas of their lives. The more a patient can manage their own health, the lower the costs of healthcare. Patients Know Best offers tools to do just that by providing the option for online messaging and consultations, which can save valuable time for both the doctor and the patient.
Efforts by the government to introduce an electronic records system in the past have dramatically failed to deliver results. In 2002, the Department of Health launched the NHS National Programme for IT, which was an £11.4 billion (US$18.5B) initiative to move the NHS toward a single, centrally-mandated electronic care record for patients and to connect 30,000 GPs to 300 hospitals, providing secure and audited access to these records by authorized health professionals. In due course it was planned that patients would also have access to their records online through a service called HealthSpace. However, in September 2011, the government announced that it would be dismantling the program. The initiative’s failure was attributed to the fact that it did not have enough buy-in from key healthcare professionals, which prevented it from addressing the needs of local NHS trusts.
Companies like Google and Microsoft have also tried to create online portals where patients can store their medical information. However because these sites are not connected to the NHS—or indeed to significant numbers of clinician teams—their value is limited. In 2011 Google announced that it was withdrawing its service called GoogleHealth and Microsoft’s Healthvault seems to be having little impact on the broader healthcare system.
The concept of patients being in control of their medical records is challenging for healthcare professionals, as it involves a mindshift in the way that clinicians relate to and engage with their patients. Common reasons cited by professionals as to why patients should not be in control of their data include: patients are not trained to understand their records, they do not want the responsibility of control, and doctors are to be trusted to decide instead of the patient. Mohammad believes that these arguments are simply a smokescreen to avoid the real issue of patient control.
Mohammad has deliberately developed a multistakeholder approach to tackle this problem to avoid the mistakes and failures of others who have tried this in the past. He has carefully thought through every stakeholder’s perspective so that he does not neglect any single party. As a patient with a long-term condition, a doctor and an IT professional, he is able to bring a unique perspective and skill set to the issue. He has insight into what each party will want from Patients Know Best having worked with doctors, hospitals, and healthcare companies.
Mohammad knows that the issue he is trying to tackle is sizeable and is always careful to break the problem down into small steps so that clinicians do not feel like they are making a huge change. In setting out to get clinicians to use Patients Know Best, Mohammad approached the leading specialists in each field first. Once he had convinced the experts it was much easier to get other clinicians to follow suit, just as once he had convinced one hospital department it was much easier to convince the next. The journey to getting Patients Know Best to be integrated into the NHS was long and painstaking for a number of reasons, including the fact that Mohammad had to make sure the platform passed the strictest privacy and legal regulations. However, that he accomplished this will be absolutely critical to the organization’s long-term success in the U.K.
Mohammad’s short-term goal is that one million people will control their medical records through Patients Know Best by 2014. He believes this will be the tipping point in the U.K. To achieve this scale, he needs to win large contracts, providing services to entire hospitals and healthcare systems and spark greater awareness among the general public. Perhaps one of the main reasons why electronic medical records have not already become widespread is that patients have not shown that they want a better system. Mohammad plans to tackle this issue by launching a campaign called Myhealthmyrecords, which will work with the U.K.’s leading patient charities to harness their supporter bases to illustrate the shortcomings of the current system and the opportunities there are to improve it.
In line with U.K. legislation, patients are currently allowed access to a copy of their medical records but only when their doctor has checked and signed every single page to make sure there is no information, which could be harmful to the patient. Through Myhealthmyrecords Mohammad wants to pick a day when he will get as many patients as possible to ask for a copy of their records at the same time, effectively crippling the system. The aim is to prove that the current system is inefficient because the doctor is the person in control of the patient’s records. When the doctor is the person in control of the data all the patient can do is read the doctor’s records. The patient cannot join these up with records from hospitals or other caregivers and they cannot control who uses the records. Mohammad is therefore in favor of patient control of records not simply patient access. This control is key because it means patients allow the movement of data between healthcare institutions, and it is this movement that improves workflow: it reduces the need for appointments, eliminates repetition of tests, minimizes medical errors and increases patients’ satisfaction. For Mohammad the issue of patient control is fundamentally a moral imperative, though he rarely discusses it in those terms. He understands that the only way to affect change is to understand the mindset and the incentives at play for each stakeholder and provide a solution that best addresses their needs.
Patients Know Best earns revenue by charging stakeholders, such as hospitals, patient charities, home healthcare companies, and pharmaceutical companies to give them accounts for all their patients. From the start, Mohammad was aware that he needed to register the organization as a company because of the huge amount of investment needed to compete with the likes of Microsoft. Mohammad’s first concern when setting up Patients Know Best was to protect the patient data from investors. Because the data is encrypted at the patient level, the company is effectively prevented from profiting from patients’ data as they cannot access any of the records. Mohammad turned down venture capital to grow Patients Know Best and is committed to gaining social investment to scale his work. He is currently looking at adequate governance mechanisms including the idea of golden shares to lock in the social purpose as the primary driver of the organization. Mohammad believes that Patients Know Best’s role is to prove that patient empowerment is feasible and achieves results in driving down costs and improving the quality of healthcare. What is most important to him is the proof of concept and the creation of an ecosystem that will drive what Mohammad sees as an inevitable and critical trend—patients being in control of their records.
While Mohammad is initially focused on reaching scale in the U.K., his ambitions for Patients Know Best are global. Indeed it is the kind of innovation that will start to deliver dramatic social impact once it reaches critical mass. For example, if 50 percent of the NHS used Patients Know Best, it would save approximately 250K tons of carbon emissions per year. With large numbers of patients using the platform, the potential for medical research becomes truly exciting. Currently one of the biggest costs to carrying out medical trials is getting the consent of patients. With Patients Know Best this could be done quickly and securely as patients could provide their legal consent online.
Mohammad is a serial entrepreneur with a proven track record of innovation in the field of computing and medicine. He has written and published six books and is a trained physician and an IT programmer.
Mohammad’s parents were pro-democracy supporters who were exiled from Bahrain in the 1970s. This meant that he spent his childhood moving from country to country. He lived in Yemen, Kuwait, Syria, Lebanon, Cyprus, and Iraq before moving to the U.K. at the age of 10 so that his father could complete a PhD.
He struggled throughout his youth with a rare genetic immune deficiency that doctors had difficulty diagnosing. Because the family moved so frequently from country to country and because his symptoms were so unusual, his mother decided to start keeping a meticulous record of his condition, which she took to every appointment. It was this record which eventually enabled doctors to diagnose his condition at the age of 15. As a result of his illness Mohammad lost some of his hearing and had to start wearing a hearing aid. He spent long periods of time from school and had to study independently so that he didn’t get too far behind. Mohammad began to use computers at home to help him with his schoolwork. He found computers and technology to be an equalizer, which helped him to keep up with his peers.
At the age of 17, Mohammad read Chaos: Making a New Science by James Gleick, which first introduced the principles of chaos theory. Mohammad saw that chaos theory was having an impact on every scientific field as practitioners learned to use software to build new models. The one exception was medicine, despite the book giving numerous examples of the human body as a series of chaotic systems. He decided to take a gap year before going to university so that he could take a programming course at the local polytechnic, which had a chaos science expert. He then went on to study medicine at Cambridge University. As a medical student he was often sought after by professors for his programming skills. He would offer to help them write software for free so that he could better understand what they were working on and give away everything he developed free online. Studying medicine was frustrating for Mohammad who was quick to spot the inefficiencies of the healthcare system and disillusioned by the reluctance among some medical professionals to use technology to make their work more effective.
As a medical student Mohammad was surprised that none of the big publishers provided handheld computer versions of their medical textbooks. When he approached them to ask why he was told that there wasn’t enough demand. Mohammad set out to prove them wrong by publishing a book himself, which could be read on handheld computers. He then set up a website called MedicalApproaches.org which allowed him to distribute the book free of charge and received thousands of downloads from around the world. Shortly afterwards medical publishers started to make their textbooks available on handheld devices. While still an undergraduate Mohammad went on to found HandheldsforDoctors.com which allowed him to earn an income through lecturing and writing freelance articles on the subject. He encouraged his local hospital to get handheld computers and wrote a piece of software which made the handover process during shift changes more efficient and safe while still ensuring patients’ privacy by encrypting their data.
After graduating Mohammad wrote another book teaching doctors to do what he had done with handheld computers but he couldn’t find a publisher to print it. Instead, he bought a book on how to set up a publishing company and set up his own firm, Idiopathic Publishing. After being reviewed by the British Medical Journal he sold the rights to the book, which has since been translated into several foreign languages. Mohammad is a prolific writer and continues to self-publish works that he wants to give away free of charge.
Mohammad later moved to the U.S., where he worked for the Advisory Board Company, a leading consultancy firm. He set up a wiki site for the company in his free time, which allowed staff to search the company’s notes online, revolutionizing the way they stored their intellectual property. Coming from a family of academics, Mohammad always felt that he wanted more business experience. After leaving the company and dealing with hospital executives, he felt ready to set up Patients Know Best.