Good Project: Patients Know Best

Patients Know Best: Putting Patients Back at the Heart of Health Care

July 31, 2013

Dr. Mohammad Al-Ubaydli, Founder and CEO of Patients Know Best, sheds light on why Patients Know Best is at the forefront of personal health care. With the mission that ‘patients know best’, this social enterprise is helping put patients in control of their medical records to the benefit of everyone, including clinicians, researchers and charities.

In the 21st century, our doctors are better trained, our procedures more sophisticated and our devices smarter, but we’re still missing the mark on something crucial to the welfare of patients—integrated care.

Medicine is intricately specialized. Millions of medical practitioners occupy ever narrower niches of practice and knowledge about the human body. This specialization arose in the past few decades because no one person can possibly handle the modern deluge of information.

It is this division of labor and knowledge that has enabled many of the miracles of modern medicine. But as clinicians know more and more about less and less, they miss something fundamental—the patient as a whole. It is only the patient and their carers that possess the full picture of their health. Only the patient has been to all the appointments and can tell each clinician what every other clinician has been doing.

For example, I have a rare genetic medical condition. As a result, I receive help from multiple specialist clinical teams in various settings. When I get an infection and see a physician, he or she often panics, unsure of how to treat me. So, to help the physician, I tell them what drugs I am currently taking, which antibiotics work, and which doses to use. I can help them help me in my treatment not because I happen to be a doctor, but because, I am a patient. I am the only one who went to all the appointments. So I know my condition the best. It is around this principle that I founded Patients Know Best, a patient-controlled online medical records platform that puts the patient back at the heart of managing their own care.

Patients are already at the center of managing their own care, but the healthcare industry has yet to catch up with this basic truth. Our current system is designed not around knowledgeable patients in control of their health, but extremely specialized doctors with a narrow field of vision. To fundamentally improve healthcare delivery, we must re-design the system itself around the patient.

Before this can happen, however, the medical establishment needs to change its attitude towards patients. Doctors must stop claiming that going medical school gives them all the answers. They must also get much better at involving patients in their own healthcare and take them seriously when they arrive with internet research or information from new online communities and social enterprises such as Health Unlocked, Patients Like Me or Crohnology among others.

To make participatory medicine work, we must first give patients control of their own medical record. Healthcare is inherently interdisciplinary and takes place both across time and space. The current Electronic Health Records EHR market sells software to hospitals as the center of data, which is great for documenting care, but not coordinating it. This inevitably leads to massive fragmentation, as patients generate medical data at different institutions, settings and over time. Making patients the locus of their own medical data, however, allows the data itself to move to where it needs to go for proper treatment. Patient controlled medical records are the best practical and legal way to share patient data through the healthcare ecosystem. It is also the right thing to do.

–Dr. Mohammad Al-Ubaydli is Founder and CEO of Patients Know BestFor more information visit

Join the conversation: check out what Patients Know Best had to say during a live Twitter Q&A during A Good Week 2013 here.

via Good Project: Patients Know Best.

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