Putting data back into the hands of owners
Ever wondered why your physician owns the information from your blood work? Or why your dentist owns your x-rays. Or some financial services company owns your credit information? Most people forget that social media companies own the messages, pictures and videos that they post everyday.
he pervasiveness of this paradox is considerable. In healthcare, x-rays, lab work and diagnostic results of patients are owned by the facilities that administer them — yet the patient paid for the tests. In financial services, banks, lending institutions and various credit agencies own their clients’ information and charge them to view it. Online, an assortment of social media magnates owns every tweet, post and comment — and only begrudgingly returns them to their creators after many months, if ever.
Why is this the case?
Until recently, with the ability to capture, store and secure digital information, only the most well-staffed and best funded organizations could afford the infrastructure and expertise to furnish such data assets. But advances in consumer technology devices, cloud computing, security measures and internet adoption rates have substantially altered this paradigm.
Today, most people have a computer, tablet or a mobile phone that can access the internet, along with the ability to store gigabits of information and images securely in “the cloud.” These technologies have made it possible to put data back into the hands of their owners.
Should patients own their medical records?
In healthcare there is a growing desire for patients to own their medical records. Interestingly, this desire is not coming from patients, it’s based on the view from medical practitioners that patient care and quality of life is directly influenced by the ability of patients to access and utilize their data.
This view is core to the Precision Medicine Initiative, a White House program for personalizing healthcare treatment for individuals and groups that have historically been underrepresented. Its mission statement points out that “Success will require that health data is portable, that it can be easily shared between providers, researchers, and most importantly, patients and research participants.” The expedient exchange of diverse data types is critical to the success of this initiative, as it will provide a more holistic view of patient care while synthesizing what have traditionally been distinct entities and data types.
Numerous organizations are striving to create situations in which patients can access their data for second opinions, research studies and a synthesis of sources to facilitate more active patient involvement in care.
One of the more recent examples in this movement is Apple’s acquisition of Gliimpse, which provides the means for patients to store and access their healthcare data to assert more control of their own care. Gliimpse provides a platform in which users can store all of their healthcare data and share it with others. Apple’s interest in the company is aligned with its other healthcare ventures, which include apps for both monitoring and researching healthcare data.
These strides to put data back into the hands of owners share a number of similarities with a separate movement to re-decentralizing the internet, which involves some of the most notable names, companies and technologies in IT today.