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The consent process for opting out of care.data should be clear and transparent, and patients should be the first to have access, says Mohammad Al-Ubaydli
The case the government makes for care.data, that allowing medical researchers access to patient data will result in new cures, is a hard one to oppose. If the case were so simple then most people, including me, would welcome it.
The question that the care.data effort brings to light is a simple one – why has the NHS moved so quickly to provide patient medical records to third parties and so slowly to provide data to the patient themselves? For me, this is entirely the wrong way round.
The consent process for opting out of care.data is neither clear nor transparent. The questions page states that the record will not contain information that can identify a patient – and it's true that NHS number, postcode, full name etc will be removed. However, it's also true that each patient's record will be linked to a "meaningless pseudonym that bears no relationship to their 'real world' identity".
The information being shared by care.data is substantial. They exclude sexual health data, such as HIV diagnosis or abortions – but they include mental health data. They exclude written notes – but they include actual diagnoses, medications and laboratory results.
In addition, the records will be shared with third parties a patient might not want to have their data. HSCIC public assurance director Dr Mark Davies has already said that, in the eyes of the law, the government can't distinguish between a request by an insurance company and a medical researcher to access the database. For them, it makes no difference. But it makes a difference to the patient, who could, would and should distinguish. Indeed, at the moment the patient isn't even allowed to see data in their own record that third parties will have access to.
Government representatives repeat in interviews that they need to open a debate on care.data – so let's have the debate now while plans have come to a temporary halt. We know from other countries that a proper discussion on government-controlled data leads to different outcomes. ...
The government says that care.data can bring huge benefits. If so, it needs to prove what these benefits are and start by giving the patients themselves data about their own bodies.
Dr Mohammad Al'Ubaydli is the CEO and founder of Patients Know Best
Researchers at Vanderbilt University Medical Center have used natural language processing technology in an electronic medical records system to identify patients with multiple sclerosis and collect data on traits of their disease course.
The work is significant, researchers say, because much remains unknown about the course of the disease, which varies widely among patients. “Most research studies have focused on the origin of the disease, partly because of the difficulty in ascertaining sufficient longitudinal clinical data to study the disease course,” according to the study published in the Journal of the American Medical Informatics Association.
“Electronic medical records may provide such a tool. We have previously shown that genomic signals of MS risk may be replicated using EMR-derived cohorts. In this paper, we evaluated algorithms to extract detailed clinical information for the disease course of MS.”
The study used algorithms based on ICD-9 codes, text keywords and medications to identify 5,789 patients with MS, and collected detailed data on the clinical course of the patients’ disease to measure progression of disability. “For all clinical traits extracted, precision was at least 87 percent and specificity was greater than 80 percent.”
... right subject matter experts and refer acceptable data sources to resolve the concerns. These huge overall health care facilities will have an enormous department of accountants, billing professionals and coding specialists.
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