What do clinicians and patients want from healthcare interoperability?

Published 2020.8.25

Section 4003 of the 21st Century Cures Act defines health information technology interoperability as

  • Enables the secure exchange of electronic health information with, and use of electronic health information from, other health information technology without special effort on the part of the user;
  • Allows for complete access, exchange, and use of all electronically accessible health information for authorized use under applicable State or Federal law; and
  • Does not constitute information blocking as defined in section 3022(a).

The federal regulations go into more detail about what information blocking and its eight exceptions. Our current interoperability efforts seem focused on sharing as many discrete elements about patient care as possible without specific regard to the value of the data shared. As we continue to refine the technical standards around different data types, most clinicians do not seem to be updating their clinical workflows when they see patients in the office to query emergency rooms, hospitals or other offices to determine what care might have been provided since a patient’s last office visit. Many clinicians state that most times they query for additional information, they are unable to find anything. If they do find something, the value of the information is questionable. In the worst-case scenario, the clinician receives volumes of information that could take more time to review than the scheduled visit.

Patients expect their care team to know what important healthcare events occurred that might affect their care plans moving forward. An emergency room visit or hospital stay may have uncovered new diagnoses or altered a treatment plan. New care team members may be needed to manage these changes. In most cases, patients expect the new information to be readily shared with an existing care team. Some questions might include:

  • Did I receive good care at the new facility?
  • Did the new team uncover a new problem or a more effective approach to an old problem?
  • What does this encounter mean for my expected quantity and quality of life?
  • Does this encounter require me to adjust my long-term management plan (medication regimen, health behaviors)?

Some care delivery organizations use emergency room and hospital encounters to suggest transferring all of one’s care to a new care team. Health systems benefit from receiving as many new patients as possible, and they may face financial losses when patients leave. Health systems might prefer to re-diagnose a patient or develop a new treatment plan rather than rely on another healthcare provider’s prior work, reducing the value of data sharing. Patients, employers and payers would prefer clinicians had some level of trust to carry over clinical information generated elsewhere, but I am not aware of any provider being penalized for repeating tests or ignoring a patient’s medical history.

Some of the lack of the value of healthcare interoperability may stem from a lack of clear communication protocols around handling external data. One process that includes the patient might be:

  1. When the patient is seen at a new healthcare facility, the patient (or caregiver) declares “My primary care team works out of the Sampson Clinic in Burlington. Their contact information is …”
  2. The new healthcare facility notifies Sampson Clinic that the patient was seen.
  3. Sampson Clinic asks for a copy of the medical records to determine what happened during the encounter.
  4. The new healthcare facility sends a copy of the medical records (Sampson Clinic’s request is protected under HIPAA’s treatment/payment/operations exemption).
  5. Sampson Clinic receives the information and reviews it.
  6. Sampson Clinic reaches out to the patient to let them know they have reviewed the encounter information from the new healthcare facility and is ready to discuss how the care plan needs to change (or not).

The CMS Interoperability and Patient Access final rule published May 1, 2020 includes policies for admission, discharge and transfer event notification to another healthcare facility or to another community provider or practitioner. The policy will go into effect on May 1, 2021. The Da Vinci Payer Data Exchange Implementation Guide Release 0.1.0 includes mechanisms for providers to request a patient’s medical history from the patient’s health plan as part of scheduling an appointment, an ad-hoc request or a Blue Button-like request for the patient’s entire record.

Proactive patients can serve as the conduit for medical records:

  1. When the patient is seen at a new healthcare facility, the patient (or caregiver) requests a copy of their medical records.
  2. The facility provides the records to the patient.
  3. The patient sends the records (or uploads them through a patient portal) to Sampson Clinic.
  4. Sampson Clinic receives the information and reviews it.
  5. Sampson Clinic reaches out to the patient to let them know they have reviewed the encounter information from the new healthcare facility and is ready to discuss how the care plan needs to change (or not).

The CMS Interoperability and Patient Access final rule includes policies for a patient access API that includes access to claims and encounter information (including cost) and a subset of their clinical information. CMS will enforce these new requirements starting July 1, 2021. The final rule also includes policies for a payer-to-payer data exchange to include US Core Data for Interoperability version 1 at the patient’s request beginning January 1, 2022.

First, the receiving provider has an opportunity not to request the encounter records. This reduces the likelihood that the sending provider will be pushing out information unnecessarily. Second, these data queries and responses are occurring outside the encounter. This gives the provider an opportunity to review the information and consider how to best incorporate the information into the care plan. Third, the workflows assume there is a way to share this information securely. Fourth, both workflows end with the receiving clinic contacting the patient to notify the patient how the care plan might have been updated or how the care plan might need to be updated. This should reassure the patient that the encounter information was reviewed.

The suggested processes have their challenges. First, the encounter record may not be complete at the time of the data request. Encouraging treating providers to send updated files to requesting providers may not be feasible. Second, these processes imply every participant is motivated to request records and respond to those record requests. Although electronic processes may reduce the likelihood the process will fail due to a human lapse, there will still need to be some human intervention to review the records and make decisions about changing the care plan. Third, there is no simple way to judge the quality of medical records returned. If the encounter record is full of checkboxes or lacks details explaining the rationale behind specific decisions, the work to request the records may outweigh the value in receiving them.

Regardless of how medical records are transferred to a care team, the care team needs to make some judgements about the information received. Much like patients, care team will have their own questions:

  • Is the information accurate?
    • Is the new information consistent with other elements of the patient’s condition?
    • “Objective” test results – quantitative lab reports, radiology images
    • “Interpretable” findings – radiology interpretations, clinical documentation
    • Inferences (diagnoses, disease severity, treatments) based on objective test results and interpretable findings
  • Is the information relevant?
    • Should the practice reinforce any suggestions from the outside encounter?
    • Does the information suggest a change in the patient’s care plan to improve the patient’s quantity or quality of life?
    • Does the information suggest a change in how the practice perform its own work to prevent or detect disease among other patients?

Most care teams would probably view external records (especially interpretable findings and inferences) with suspicion. More specifically, clinicians are unlikely to stake their professional reputations on the findings or interpretations of others. Health information management leaders will want to denote external records explicitly in separate folders or with large headers or watermarks. Some objective test results and inferences from others that are consistent with the current treatment plan may be easier to incorporate into the care team’s decision-making compared to other information that may not be consistent with the care team’s existing approach.

This complexity in how healthcare information is ingested suggests that fully electronic interoperability as defined by the federal government may not improve American healthcare. Patients expect care teams to take a holistic view of their conditions and help determine the diagnostic and therapeutic tactics that maximizes their chances of improving their quantity and/or quality-of-life in ways that are consistent with the patients’ preferences. Tracking information across care settings may or may not add value to that task. When patients transfer their care to a new provider, they expect their existing care team to help orient the new care team to the patients’ care path to date. Medication lists with medication allergies, problem lists and recent laboratory results may start that knowledge transfer. A concise summary that includes indicators of disease severity, prior therapeutic maneuvers and patient preferences would add to that information sharing. Providers use external encounter information to update their own assessments and help them consider new courses of action. Transferring external records into another electronic medical record in a preferred format may or may not add value to that task.

But a patient may appreciate the portability of their medical records for other reasons. In a healthcare system when payers change provider networks monthly and employers change health insurance providers frequently, migrating medical records to new providers is essential. The electronic handshakes to pass healthcare information from one location to another may help transport data easily, but the data will still need to be reviewed for validity and relevance. Ideally, patients will gravitate toward practices that assess patient preferences and review medical records with patients before assimilating them into their electronic medical record systems. The electronic transfer of healthcare data serves as a starting point for a discussion about prior medical events and possibilities to achieve better health in the future.