What the pharmacy knows -- Data bonanza for pharmacies and middlemen -- The covert alliance -- Patient power -- The dossier on your doctor -- Supreme Court battle -- Studying patients over time -- Fighting for patients -- How safe is "anonymized"? -- Korean War over patient data -- The patient's data tower of babel -- 21st century advances -- Intimate, anonymized, and for sale -- At the bottom of Niagara.
Summary:
Hidden from consumers, patient medical data has become a multibillion-dollar worldwide trade between our health-care providers, drug companies, and a complex web of middlemen. This great medical-data bazaar sells copies of our prescriptions, hospital records, insurance claims, blood-test results, and more, stripped of names but still containing identifiers such as year of birth, gender, and doctor. As computing grows ever more sophisticated, patient dossiers are increasingly vulnerable to re-identification, which could make them a target for identity thieves or hackers. Paradoxically, comprehensive electronic files for patient treatment-a key reason medical data exists in the first place-remain an elusive goal. Even today, patients and their doctors rarely have easy access to full records that could improve care. In the evolution of medical data, the instinct for profit has outstripped patient needs. This book reveals the previously hidden story of how such a system evolved internationally. ...This investigative narrative seeks to spark debate on how we can best balance the promise big data offers to advance medicine and improve lives, while preserving the rights and interests of every patients. We, the patients, deserve a say in this discussion. After all, it's our data.-- Book jacket.
This resource is supported by the Institute of Museum and Library Services under the provisions of the Library Services and Technology Act as administered by State Library of Iowa.