Dr Mohammad Al-Ubaydli, in conversation with Healthcare World MD Steve Gardner, explains why healthcare systems should be built around the patient
Giving patients access to their medical records might appear one of the least controversial ideas in healthcare. Every appointment and test result contributes to the record, yet patients themselves often access only fragments of their own information.
Healthcare systems increasingly expect people to take responsibility for their wellbeing. Governments promote prevention, while apps and wearable devices help individuals monitor their health. However, providers are still largely paid for activity rather than outcomes. A better-informed patient may need fewer appointments or avoid repeated tests, with consequences for revenues and staffing models.
Personal ownership
Dr Mohammad Al-Ubaydli, known as Mo, founded Patients Know Best (PKB) in 2008 around the principle that healthcare should be organised around the patient rather than the institution.
“The patient is the only person who is present at every single healthcare interaction,” he says. “If you want continuity and coordination, you have to start with the patient.”
The argument is personal as well as professional. Mo is a doctor and digital health entrepreneur who lives with a rare disease that he largely manages himself. Direct access to information is not simply convenient; in some circumstances it can save lives.
Patients already hold their own financial information, so why not their health information? Mo believes healthcare systems underestimate the practical and economic value of informed patients. “At PKB we get paid to give patients their medical records because a person with their own information is actually cheaper to look after.”
An early conversation with a nurse revealed that giving patients their records could lead to job losses because fewer people would need help navigating the system. “I realised the system isn’t always designed to keep people well – sometimes it’s designed to keep activity happening,” Mo says. The challenge is to redesign services so that expertise is directed towards interpreting information and supporting decisions, rather than repeating investigations that are documented elsewhere.
Patients who understand their health may require fewer explanatory appointments and can act before an illness worsens. A complete record also helps clinicians provide appropriate treatment during an emergency.
The economics of prevention
Political support for prevention is widespread, but funding models rarely reward it consistently. The problem is particularly acute in insurance-led systems, where an insurer may invest in someone’s health only for that person to move elsewhere before the benefit is realised.
“The only party that has interest in the person over decades, apart from the patient, is the government – the sole organisation that stays with citizens for life,” says Mo.
Governments therefore have a distinctive responsibility for prevention and continuity of care. However, preventive policies can take years to produce measurable results. “Nobody notices if you quietly improve prevention, but everybody notices when the emergency department is full.”
Patient data
Debates about ownership can become unnecessarily complicated. “You can still say the provider owns the original record if you want,” Mo says. “Just give the patient a copy.”
Patients are often the only people able to combine information from every organisation involved in their care. They also generate increasing volumes of data through smartphones and wearable devices. Information collected continuously may reveal patterns that cannot be seen during occasional appointments.
“In healthcare we’re moving from snapshots to continuous understanding,” says Mo. “A doctor may see you for ten minutes every six months. Your phone sees you every day. Given that the most important indicator of accuracy is frequency, this is one of the most important reasons for individuals to have a copy of their personal medical history.”
Clinical interpretation
Greater access does not diminish the importance of clinicians. Their role moves from collecting information towards interpreting it and helping patients act. That change could be especially valuable in chronic disease and mental health, where long-term patterns may matter more than isolated consultations.
Outcome measurement remains difficult. Procedures such as hip replacements have defined recovery pathways, while improvements in quality of life or mental health are harder to quantify. “Health is more complicated than counting procedures,” Mo says.
Trust and transparency
Patients are increasingly aware of the value of health information and the risks created by hacking or surveillance. “People are right to ask questions about data,” says Mo. “Trust is earned through transparency.”
Patients should be able to see their information and know who can access it. Visibility increases confidence, while systems that allow organisations to view data but restrict the patient immediately create suspicion.
Mo would introduce a universal requirement for every provider to give each patient a machine-readable, coded copy of their information. As records become more digital and distributed across multiple organisations, the patient remains the only constant throughout the care journey.
For Mo, the debate is therefore about healthcare philosophy rather than technology alone. “The future of healthcare is not something done to patients,” he says. “It’s something built with them.”
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