By Cristin Gardner
Retrieving complex medical records, including imaging, is typically a burdensome process for both patients and radiologists. Disparate health systems don’t help matters. Patient leakage and competitive pressure complicate the challenge of balancing patient access with relinquishing ownership of data.
It is widely recognized that separate health institutions do not communicate well with each other when it comes to sharing medical data and images. Patients experience frustrating hurdles, are often required to duplicate efforts and jump through hoops because of confusing or outdated policies, and run up against other complexities that often lead them to give up and carry on without their medical information.
With technology at our fingertips and medical data access rights supporting patients, one may ask why it’s such a challenge to share medical imaging. Health care is notoriously resistant to modernization and dependent on outdated technology and complicated institutional processes that create data silos and challenges for patients.
The majority of health care organizations in the United States still share complex imaging records with patients via CD. Medical records may be complex, but the solution to this problem is simple: Update institutional policies for sharing medical records and adopt readily available technology to support a more streamlined patient experience. As a bonus, solutions that enhance patient access to data will bring many institutions back into compliance with the HIPAA Privacy Rule.
Navigating a Perplexing System
Health care may be one of the only industries that still requires an individual to fill out forms and navigate multiple steps to obtain information that specifically pertains and lawfully belongs to them. Every provider organization or health system seems to have different medical record request policies. This is the first hurdle. For example, a patient may request records with a simple e-mail at one organization but have to endure a complicated manual, wet-signature process at another.
This can be confusing, as patients do not know what to expect and may lose track of medical request processes. While it would be difficult to expect all health systems to adopt the same process for requesting medical records, technology is helping to move the industry toward a more streamlined process.
Navigating an inconsistent and confusing system impacts some areas of health care more than others. Take breast health and cancer screening, for example. Over the course of 20 to 30 years, 60 million women in the United States are imaged regularly as part of breast cancer screening. For breast cancer detection, diagnostic imaging records from past exams are critical. Doctors rely on past mammograms and clinical reports for comparison.
Without these prior records, a doctor may be unable to determine the difference between a normal area of tissue that is benign but unique to the individual and an area of concern that must be further examined to rule out the possibility of breast cancer.
Accessing these priors is so challenging that more than 25% of women arrive at breast screening appointments without their prior records. These women are significantly more likely to receive a callback for additional testing, with 95% of these callbacks resulting in false-positives.
When women are armed with an understanding of the importance of this information and supported by the health care industry with easy access to their medical records, the results can be lifesaving, reducing false-positives while increasing the chance of catching breast cancer earlier, before it has spread.
Providers Are Decades Behind
Another hurdle is institutional dependence on outdated technology. While most provider organizations have adopted EHRs, nearly 80% are still sharing patient records and diagnostic images using CDs. Many others are using hard copies and fax machines to send health information.
These delivery methods, which are not easily shared and no longer exist in any other consumer-facing industry, generally make life miserable for patients. Nevertheless, they are commonplace due to HIPAA misunderstandings and stale institutional policies. Resistance to utilizing updated formats for sharing medical records leads to frustrated patients and can contribute to poor care outcomes.
Why are providers stuck in the past? For decades, it was difficult to find easier ways to share medical records. CDs, which were more digital than traditional hard-copy film, were the best option at the time. As digital-sharing technology evolved, the process of burning and mailing CDs became more deeply ingrained into medical record workflows.
CDs are expensive and inefficient, but as the saying goes: Better the devil you know than the devil you don’t. Change is uncomfortable in the short term even if it’s the right choice in the long term. Any change in process is perceived to compete with other organizational initiatives and can be temporarily disruptive. This is a systemic issue embedded in health care institutions.
When health may be in jeopardy, these hurdles create additional stress and anxiety for patients. Provider organizations should work to accommodate and alleviate stress when possible, including having simpler, more accessible processes for obtaining important medical information. Today, there are many cloud-based digital applications available for sharing medical information while maintaining HIPAA compliance.
When the 60 million women who receive regular mammograms all follow doctor’s orders and come to appointments prepared with their prior records, tens of millions of CDs are circulating around the health system. How many of those are unreadable or damaged? How many patients lost the CD or never received it in the mail?
Failure to replace CDs with a more viable option is hurting the patient experience and creating delays in care. Research has proven that when a woman is able to share her prior breast health exams with her provider, together they can make informed decisions and create significant clinical, experiential, and economic value.
Breast health clearly demonstrates the importance of patients owning their medical information. Over a lifetime, a woman will need to create a longitudinal record of her care. She will more than likely visit multiple providers and her records will accumulate in different places.
However, regardless of her breast health status and whether her exams are for routine screenings, high-risk monitoring, treatment, or posttreatment follow-ups, her current doctor will need her past breast health records to develop a comprehensive analysis and make informed, accurate care decisions. When a patient is in control and owns her medical records, this process is streamlined and simplified. When patients have this information on relevant digital platforms, hurdles to gathering the information are further eliminated.
Now more than ever there is a push for a more interoperable and patient-accessible health care environment. Regulatory agencies are proposing rules and updating guidance that supports patient access to medical data and eliminates current challenges plaguing the health care experience.
In February, the Office of the National Coordinator for Health Information Technology (ONC) and the Centers for Medicare & Medicaid Services released two highly anticipated rules focused on giving patients greater access and control over their own health information.
Shortly after the announcement of those proposed rules, the Office for Civil Rights (OCR) updated its HIPAA guidance to reflect the growing adoption of mobile apps that can store and share medical information. In April, OCR released expanded guidance for sharing data with patients to include clarification surrounding compliance with requests to share health information via apps, stating that provider organizations are not liable for subsequent use or disclosure of the data and are obligated to comply with the patient's request.
By defining the responsibility and liability of sharing medical data with patients through third-party mobile apps, OCR is supporting patient access to their health information through relevant formats, while protecting provider organizations once the protected health information leaves their facility.
While the ONC rules are not yet final, the shift to easier patient access and OCR guidance is clear: Clarifying policy surrounding liability protects health care organizations while supporting consumer demands for easier access and transparency of medical information.
Meeting Patient Demand
By acting as their own advocate, patients are taking control of their health data. The health care industry can support this effort by developing more portable methods of gathering, owning, and sharing medical records and health information. Patients have grown accustomed to accessing any information they need through digital formats, especially via smartphones. They expect health care information to be available in the same way.
Technology is not the problem—mobile apps and other cloud-based platforms are available. Consumers expect provider organizations to meet their demand and share medical information through these relevant platforms.
The gap between patients and their medical records should no longer exist, but patients are at the mercy of the health care system when it comes to accessibility. Technology and the government are helping to close the gap.
Digital innovation will continue to transform health care. Government mandates will further catalyze change. The sooner provider organizations adopt new technology and policies, the faster hurdles will be eliminated, and both patient care and experience will improve. The industry must work to eliminate these hurdles, put patients at the center of care, and provide tools to help them move across the system with ease.
— Cristin Gardner is director of consumer products and markets at Life Image.