As patients strive to manage their own health and illnesses, many wonder how to get a copy of their health data to share with their physicians, load into apps, donate to researchers, link to their genomic data, or have on hand just in case.
Kenneth D. Mandl, and Isaac S. Kohane, (2016) Time for a Patient-Driven Health Information Economy? N Engl J Med 2016; 374:205-208
‘Data liquidity’ (“flow among data generators and customers”) is also one of the ways of achieving citizens science.
Among the barriers to data liquidity the article identifies:
Competitive intelligence might be released about, for example, high-value markets or hospital-acquired infections. Some organizations fear security breaches or leakage of patients from their provider network. Transferring data to another product may jeopardize the EHR vendor’s business model, as vendors may have trouble retaining customers if exclusivity is broken.
And technological approaches have fallen short. […]
And recent enabling factors (in the US):
Now, intersecting trends have set the stage for a fresh start. Nearly two thirds of Americans own smartphones, with online access, apps, and both local and cloud storage of data. As health care reimbursement shifts toward risk-based contracting, providers seek to understand the totality of patients’ experience, which requires aggregating data across care silos. As the clinical research infrastructure accommodates pragmatic studies and incorporates patient-centered outcomes in therapeutics development, patients are increasingly asked to report on adverse events and end points and donate health data to trials. Fortunately, the belief that it’s dangerous to allow patients access to health data is slowly dissolving, […]