By Cristin Gardner
Government scrutiny and changing expectations among patients have led to significant dialogue around patient rights to access and own their healthcare data. Demand from both parties, with support from technology innovators, is forcing change in healthcare. Every other industry has undergone a digital transformation that has made the consumer experience seamless, but healthcare has remained stagnant, dependent on outdated practices when sharing medical information. Modern technology is available, but institutional inflexibility has hindered advancement. Now with increasing pressure from these forces, healthcare is playing catch-up to meet a new level of patient demand for data access and portability.
Federal mandates are driving change
In February, the Office of the National Coordinator for Health IT (ONC) and the Centers for Medicare and Medicaid Services (CMS) released two eagerly anticipated rules focused on giving patients greater access and control over their own health information. That policy push was followed up in May with the Department of Health and Human Services (HHS) Office of Civil Rights (OCR) releasing expanded guidance for sharing data with patients under the Health Insurance Portability and Accountability Act (HIPAA). The guidance included a pivotal clarification — when a patient shares protected health information with a third-party app or requests their healthcare provider share their health data with an app, the provider organization is not liable for any subsequent use or disclosure of the data and is obligated to comply. This guidance explicitly removes liability from the provider and, therefore, eliminates perceived legal, privacy and security barriers in complying with a patient data request.
Patients expect more
Patients have come to expect that their medical information should be easily accessible through email or smartphone apps in the same way they’ve grown accustomed to in the rest of their consumer lives. Take women’s breast health as an example, as this area of medicine is heavily dependent on medical images. Every woman has unique breast tissue and comparisons to prior breast images are necessary in order to accurately detect cancer. Despite the importance of priors, one in four women do not have access to their priors at the time of screening, which leads to callbacks, unnecessary duplicate testing, and anxiety. Even more disconcerting is that women diagnosed with breast cancer will arrive at oncology or surgical consults without these past records. They simply can’t get them.
Poor patient experience and poor patient outcomes
Provider reluctance to giving patients digital access to their data stems from a variety of reasons, from resistance to change to data blocking in an attempt to prevent patient leakage. Regardless of the reasons, however, denying patients access to their data results in poor patient experiences and even poorer patient outcomes.
To fulfill patient requests, medical images are often shared using physical media such as CDs, which are now obsolete in the consumer world. CDs are often unreadable or damaged, and the onus is usually on the patient to pick up and drop off CDs. When health is at stake, many women cannot run the risk of waiting for CDs to be mailed or getting lost, so many women end up being the courier. If a woman moves to another geographic location, proximity becomes another barrier standing in the way of optimized breast health care.
Is healthcare ready to transform?
In today’s highly mobile and connected world, technology is not the problem. The technology companies that have orchestrated disruption on behalf of consumers in other industries now have their sights set on healthcare. They are applying the consumer mindset to meet patients where they are and support their expectations for a more seamless health experience.
While the ONC and CMS proposed rules are not yet finalized, the recent guidance from OCR clearly encourages data sharing and improving patient access to medical data. By clarifying the policy surrounding liability, healthcare organizations are now better protected as they support patient demands for easier access to medical information.
Digital platforms and cloud-based apps for storing medical information in a secure, HIPAA-compliant manner may soon become standard. Provider organizations must prepare for increasing patient demand to deliver data in this format, and for proactive government mandates that catalyze change and ensure compliance. Clinicians have an opportunity to positively influence the development of health-focused digital applications to best serve patients and the healthcare industry. Supporting patient access to medical data through more portable channels is the first step in this critical, consumer-driven evolution.
About Cristin Gardner
Cristin Gardner is Director of Consumer Products & Markets at Life Image.