As a patient with a rare disease himself, Mohammad quickly realised he was often repeating his story and explaining his condition to the healthcare experts he routinely saw. These healthcare professionals relied on him to provide accurate information about his condition and like many patients, he therefore, became the ‘expert’ on his own health.
From this experience, Mohammad understood that patients not only have the power to change their own health destinies but they also hold the key to a more sustainable and responsive healthcare system which better meets the needs and expectations of citizens. However, to make this a reality, they need access and accountability of their health records.
With a bold aspiration to empower patients to ultimately ‘know best’ and backed with independent research to demonstrate the benefits of this approach, in 2008, Mohammad founded Patients Know Best.
From the beginning...
It was just a normal day, like any other when in 2007 a patient with chest pain arrived at Vanderbilt University Medical Center. Dr Jim Jirjis ordered a CT scan to rule out abdominal aortic aneurysm, a very serious condition. As usual, that day Jim was busy helping many patients, so he focused on the first line of the radiology report: “No evidence of AAA”.
Dr. Jirjis orders a CT angiogram to rule out aortic dissection for patient with ripping chest pain
Dr. Jirjis reads ‘no aortic dissection’ in radiologist’s summary and sends to patient through MyHealthAtVanderbilt
Patient reads ‘thyroid lump’ buried in radiologist’s full report and sends message to Dr. Jirjis asking ‘what about my thyroid?’
Biopsy reveals thyroid cancer and cancer successfully excised
The patient was fine. Jim ordered a biopsy of the thyroid which confirmed the cancer diagnosis but thankfully, it was early enough to remove completely.
From that day, Jim began asking all his patients to register. The ‘patient and professional are a team’, he would explain. The professional needs the patient to look at the data with their professional. Together, they would spot the problems and together, they would plan the solutions.
I started Patients Know Best in 2008 – a year after hearing the story of Dr Jim Jirjis. I had spent a whole year researching for hospital IT directors how to make records available to patients, and another year begging them to do so.
At that point, I knew how important this would be for patients. I could see it so clearly from my personal experience as a patient with a rare disease how this would have helped me get better, safer, more convenient care. And my research showed how much money this would save healthcare systems. Jim’s story also showed how this would reduce stress on professionals.