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Sharing Information electronically with patients

Sharing information is important to improving patient access and control of their health records. Federal legislation and regulation has standardized requirements and compliance measures to encourage interoperability and seamless electronic transfer of health information.  Initiatives such as OpenNotes, have supported providers and patients sharing information.

Information Blocking Top 5

Practice Implications

  1. The rule
    Federal regulation prohibits healthcare providers, systems, and information technology (IT) vendors from blocking the exchange or access of electronic health information (EHI). A major component of this rule is the release of health information to patients including (and not limited to) clinical notes, laboratory data, imaging, and pathology reports without unnecessary delays which could be information blocking. Information blocking is defined as any practice which is likely to interefere with the access, exchange, or use of electronic health information except as required by law or specified in an exception. The intent is to improve patient access and control of their health records through standardization and compliance measures to nurture the development of innovative tools for accessing and using health data and to encourage and empower patient self-management with their own health data. Learn more with HealthIT.gov's updated FAQs.
  2. What needs to be documented and released
    Effective October 6, 2022, the rule requires actors, which includes clinicians, to release all electronic health information to patients under HIPAA unless covered by an exception or expressly prohibited by law. This is a change from the prior requirements where only defined clinical notes, labs, and other information, as specified by the United States Core Data for Interoperability v1 (USCDI) were required for release. Your electronic health record (EHR) vendor is also an actor and has tools and workflows to support this rule. Reach out to your vendor to get more information about how their features can help you meet these new requirements.
  3. Requirements:
    Providers/practices must list or update their digital contact information in the National Plan and Provider Enumeration System (NPPES). Additionally, software updates may be needed to your EHR to allow for the immediate release of this information into an electronic patient portal and through your vendor’s interoperability platform. If you do not have a patient portal, you need to be ready to provide the requested information via the method requested by the patient without delay or cite exceptions. Your vendor may also have additional functionality that will allow clinicians to have flexibility at the individual order and note level to prevent or delay release if it meets the physical harm or patient preference exceptions. If your vendor has not reached out to you about this functionality, you should contact your support team to learn more about how to implement these changes.
  4. Responding to requests for information from patients and 3rd parties
    Responses to requests for sharing information must be provided in a timely manner and documented. Lack of EHR capability does not absolve a practice from a timely response to each request. Responses should fulfill the inquiry in the format requested, in an alternate machine-readable format, or decline the request. If responding via alternate machine-readable format or declining the request, cite specific, individualized applicable exceptions, as described below, while avoiding generalized practice-wide policies. We recommend anticipating common requests and setting up automated processes to respond, preferably by leveraging EHR capabilities.
  5. Exceptions
    Exceptions: Each exception addresses a category of risk where not fulfilling a request for information could be considered information blocking and provides specific criteria to minimize that risk.
  • Preventing Harm: provider feels that withholding the requested information will significantly reduce risk of harm. Information provided may endanger life or physical safety of patient or another person
  • Privacy: request would violate HIPPA or state regulations
  • Security: provider may interfere with information exchange in order to protect the security of EHI. Practice has policy in writing or case-by-case review in writing and non-discriminatory
  • Infeasibility or Health IT Performance: Not able to provide information due to technical limitations related to software, uncontrollable events (e.g. PHE), or maintenance/downtime of EHR
  • Content and Manner: Information requested is not USCDI v.1 or cannot be provided in the manner requested (then must be provided in a different manner).
  • Fees or Licensing: significant cost associated with providing information

Provider/Patient Implications

  1. Use technology to aid in communicating with patients
    Electronic tools such as patient portals are one way to implement secure and rapid exchange of health information to patients. While patient portals do not replace the need for a face-to-face or a telehealth visit, this tool may help quickly communicate with patients.  For a guide on best practices on implementing patient portals in your practice, view HIT.gov’s playbook. Telehealth visits may also be another mechanism to provide timely access to discuss test results or address other concerns as health data becomes rapidly available to patients. Access telehealth resources. 
  2. Considerations when sharing notes
    Since HIPAA, patients have a legal right to access information in their medical records in a timely fashion. The current rule expands this access to immediate electronic availability of notes for patients. Summarized studies from the OpenNotes initiative have shown only a minority of patients contacted their physician’s office perceiving an error after reading their clinical notes. Additionally, a majority of patients and their caregivers reported better understanding of health conditions, remembered the patient’s care plan, and felt more in control of care.
  3. You cannot delay results
    Expectations about when data will be available, how to handle potential next steps, and timelines on when you and your practice can communicate with the patient should be discussed and documented as early as possible. Consider working with your healthcare administrative leadership and physician colleagues for standardized language to be included as part of clinical notes and patient portal disclaimers and for policies to handle rare exemptions. Discuss with patients upfront prior to ordering a test (imaging or lab) about what you are looking for and what the next steps are if the test is either “positive” or “negative.”
  4. Use of team-based care
    Employing care teams is another approach to help communicate and counsel patients as data becomes more readily available. Examples include appropriate utilization of advanced practice providers with physician support and/or supervision, as well as re-evaluating messaging protocols with clinical staff. One tenant of team-based care is to ensure everyone is working “at the top of their license.” Access team-based care resources. 
  5. Exceptions to the rule
    A provider who engages in practices that prevent harm to a patient or another person will not be considered information blocking, however, this is a strict definition. This type of exception is not specific to a test or result type but applies to an individual patient and individual piece of information. For additional details about exceptions, see the AAN’s Practice Implications Top 5.

Additional Information Blocking Resources

Practice COnsiderations Sharing Notes

While the majority of studies have looked at release of primary care visit notes, neurologists may be interested in implementing note release in their outpatient practices. Opening the chart to the patient can be considered in the same manner as any other medical intervention, with specific benefits and risks. This toolkit provides general and specialty-specific considerations for implementing note release.

Learn More:

Can You Share Notes?

Most electronic health record (EHR) programs have this functionality built in; some smaller EHR programs may not. Check with your vendor if you are unsure about the capability in your EHR.

Who Will Share Notes, and What Will Be Shared?

Notes are often shared with patients via patient portals. Beginning November 2, 2020, new federal regulation prohibits healthcare systems and providers from blocking health information from patients. As a result of this information blocking rule, the immediate release of health information including (but not limited to) clinical notes, laboratory data, imaging and pathology reports will now become immediately available to patients who are signed up to a patient portal.

For more details about this rule, what needs to be released, and limited exceptions:

Consider the types of information to be shared:

  • Progress notes
  • Telephone calls
  • Nursing notes
  • Imaging and Pathology reports
  • Laboratory data
  • Notes written by nurse practitioners, physician assistants, and ancillary staff

Additional Considerations

Special circumstances exist with regards to non-physician, trainee, and advanced practice provider notes. Processes by which certain notes must be cosigned or reviewed by attending clinicians should be reviewed. Notes should only be considered completed when cosigned by the attending physician. Notes for mental health, from confidential departments, and accessed by proxy should also be reviewed. Processes for inpatient or outpatient notes may differ. Check with your EHR vendor, healthcare system, and state regulations regarding requirements for these special circumstances.

Learn about additional considerations.

How Will Providers Be Informed?

Education is key at this stage.

  • As with any new intervention, some providers will be reluctant to allow patient access. They may fear an increased workload due to patient questions regarding the note. Initial studies did not show an increase in time spent with patients or answering questions after the visit.
  • Providers may need guidance to adjust their documentation style to one that's more "patient friendly."
  • Remind providers that patients can already access their progress notes via a signed release of information request.
  • Consider counseling providers to hold initial consultation reports from release if sensitive diagnoses (e.g., Huntington's disease, conversion disorder) are being considered and have not been discussed with the patient.
  • Develop FAQs to address provider concerns.

How Will Patients Be Informed Notes Are Available?

"Big Bang" Roll Out 

Consider wide notification of patients, with clinic posters, brochures, patient messages, advertisements.

"Quiet" Roll Out

Patients could receive individual notification after their visit is complete via portal message or on their After Visit Summary.

Consider sending patient reminders that a note is available for viewing after a visit is complete.

ADDITIONAL RESOURCES