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tribulations of medical data exchange
July 08, 2020

Integrated Healthcare Executive: The Trials and Tribulations of Medical Data Exchange Are at a Tipping Point

CDs were commercially released in 1982, rose in popularity over the decade, and reached peak success in the 1990s before being replaced by more convenient technology. After a 38 year career, it’s about time for the CD to retire, and it has in nearly every industry except health care. CDs, as well as faxes, are still used as the primary mechanism for data exchange in health care, especially between patients and providers, but the reluctance to change must end now. Federal policy and consumer demands intensified by the COVID-19 pandemic are breaking down barriers to exchanging medical data and patients’ ability to control their own health information.  

Patients Want the Data

As consumers, patients have grown accustomed to picking up their cellphone to access data, make transactions with businesses or share information. They expect health care to be the same, but the experience is drastically different. According to a recent Life Image survey, 40% of patients had to visit their provider’s office in person to submit requests for medical records. Additionally, 40% received those medical records on a CD. Since most non-health care interactions are streamlined through smartphones, this antiquated process can seem very cumbersome and frustrating to patients.

Reliance on low-tech exchange tools has a negative effect on care creating inconvenience, delays and increased anxiety, in what may already be a stressful medical situation. If patients cannot obtain their records ahead of important appointments, they may need to undergo repetitive appointments in order for doctors to have the information they need. CDs are often unreadable, lost or broken – creating more challenges to exchange medical information. All of these barriers result in added costs and lost time.  

Patient portals that store simple forms of medical data (such as lab results) have existed for some time now but they are limited in scope. Most portals cannot handle advanced data such as medical imaging, genomics or pathology and only allow patients to view their own information from a single facility. Patients cannot own and share their own data. In fact, 66% of patients in Life Image’s recent survey have a portal offered by a provider. However, only 13% of those respondents have received records through the portal, indicating low adoption on the provider end to use portals as a data-sharing platform.  

It is not enough to have a portal to access simple medical data especially when one is managing chronic or complex conditions where it is essential to compile a longitudinal history for care management or advancing research. The portal must be robust, matching clinically valuable data from different sources (such as EMR data along with diagnostic imaging and lab reports) together in one place to create a complete history of a patient.  

A comprehensive portal solution gives patients the opportunity to own and share basic medical information along with more complex imaging data. The portal should give patients a seamless way to manage their data requests online where they can confirm HIPAA and privacy consents, and then send a request to medical records teams. While the HIPAA Right to Access rule already allows a patient to access their records in the format of their choice (e.g. via an online app), additional federal laws going into effect in 2021 will strengthen this ability even further with big penalties for those who engage in information blocking.  

The new federal laws have an overarching policy goal: to give patients control of their data. Not only will this ownership spur innovation as it has in other sectors such as finance, it will make care coordination and research aggregation much easier. Patients with dispersed care teams, or that have seen multiple providers over time, can organize care from all providers in one place instead of separate portals for each provider or health system.

Aside from the long-term policy goals, there is an immediate and urgent need for this capability.

Antiquated Data Sharing Systems Demonstrate Their Shortcomings During Covid-19

Approximately 94% of patients seeking care at a hospital during the peak of COVID-19 in America did not have historical medical records related to underlying conditions available to share. During a highly contagious pandemic of an illness that presents differently for different patients, this data is necessary to help providers understand counter-indications, determine appropriate therapy and support post-acute monitoring. 

COVID-19 created a heightened awareness of the challenges to access patient information for both patients and their providers. While it is understood that it is essential to have quick and easy access to important clinical data that is typically buried within silos, action to make it more accessible has been slow-walked. When a patient has control of their data, for example through a patient-owned portal, this information is available in one place. Patients support providers by sharing health information from different members of their care team. This is great for episodic, routine care, but the value increases for chronic and complex conditions, such as cancer, respiratory illnesses or musculoskeletal issues where longitudinal clinical data and images are critical to informing ongoing care, treatment or therapy evaluation, or post-acute monitoring.  

Federal Requirements Demand the Data be Available

For decades, interoperability (i.e. more seamless data exchange) has been viewed as a threat to business as it will cause patient leakage. The reality is that as the world becomes more interconnected, interoperability in health care will catapult health care to the 21st century with easy access to clinical data for all stakeholders. Under Cures Act Final Rule finalized by the Health and Human Services (HHS) Office of the National Coordinator for Health IT (ONC), giving patients control of their medical data through smartphone apps and modern software will soon be required. The rule supports a patient’s right to securely access and control their electronic medical records and requires health care and health IT to advance APIs and technology to make that happen.  

Adopting robust solutions, such as patient portals, that combine different formats of data for a more complete patient narrative is readily available. Patient portals with sharing functionality are not intended as another burden for providers, but as a way to transition into a more modern form of exchange with patients. If a patient is at the center of care, they should also be the central hub for data control facilitating management and sharing across their individual care team.

Originally published on Integrated Healthcare Executive on July 7, 2020.

Matthew A. Michela, President and CEO

Matthew A. Michela

President and CEO