Health IT, Hospitals, Pharma

Rare disease survey: Physician-patient networks could cut down diagnosis time (infographic)

A new report is recommending developing more online networks as a way to shorten the […]

A new report is recommending developing more online networks as a way to shorten the more than seven year timeframe to diagnose a rare condition.

The report by drug developer Shire envisions these networks as connecting specialists with patients and their primary care physicians.In a survey of physicians in the US and the UK, more than 85 percent in the UK and 76 percent in the US said it’s difficult to coordinate with other physicians when managing a patient with a rare disease. More than half of US physicians said there are not enough opportunities to network with physicians who treat rare diseases.

And it’s not just physicians and patients who need more help. Almost all payers in the US and UK that were surveyed said they don’t have enough information to determine the standards of care for rare diseases and that it is more diffi cult to decide what coverage to provide for these patients than others.

Among the reasons why it takes so long to diagnose a rare disease are, not surprisingly, they occur so infrequently that a lot of physicians lack experience identifying them and don’t recognize the symptoms. That means patients have to have several diagnostic tests as part of the process to identify them. Patients may go through as many eight primary care and specialist physicians. And even when a diagnosis is reached, there may be no treatment options.

Although some networks have been started to improve recruitment for clinical trials and patient centered communities for people with rare conditions have been launched, there has not been as much momentum as chronic conditions like diabetes because fewer people are affected by these conditions and the patient community for any one condition may be spread across  the globe. The report estimates that there are 350 million people globally with rare diseases.

To help address some of these pain points, a new Scandinavian startup Find Zebra is drawing attention to the quandry of identifying rare conditions with the launch of a search engine for clinicians that’s designed to be more comprehensive than Google by utilizing publicly available databases from rare disease research institutions.

[Photo Credit: Big Stock Photo Healthcare Network]

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