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
- Sharing information with patients (federal information blocking prohibitions)
prohibits healthcare providers, systems, and IT vendors from information blocking, which is defined as any practice likely to interfere with the access, exchange, or use of electronic health information (EHI); actors (including clinicians) must release all EHI to patients unless covered by an exception or expressly prohibited by law. This rule requires the release of all EHI to patients, including clinical notes, laboratory data, imaging, and pathology reports, without unnecessary delays. Your EHR vendor will have tools and workflows to support this rule. Reach out to your vendor for more information on how their features can help you meet these requirements. Learn more with . - Required EHI to share can be more than you think
as “electronic protected health information (ePHI) to the extent that it would be included in a designated record set (DRS).” A designated record set is a group of records including medical and billing records about individuals; records maintained by or for a health plan that includes enrollment, payment, claims, etc.; or records used to make decisions about individuals. If information is individually identifiable, maintained in or transmitted by electronic media, included in a designated record set, and is not excluded from the EHI definition, it is considered EHI. - Disincentives if found to be information blocking
In June 2024, the Department of Health and Human Services for those found to be information blocking. In addition to the specific disincentives listed below, names, addresses, the nature of the information blocking, and the applied disincentive will be published publicly online.
- If a Merit-based Incentive Payment System (MIPS) eligible clinician is found to be information blocking, they will not be a meaningful user of certified EHR technology and will receive a zero score for the Promoting Interoperability (PI) category of MIPS. Given the historical weights and thresholds of MIPS scoring, a zero score for the PI category will make it difficult for the eligible clinician to avoid a negative Medicare payment adjustment.
- If an Accountable Care Organization (ACO) or ACO provider participating in the Medicare Shared Savings Program is found to be information blocking, they may be deemed ineligible to participate in the program for at least one year.
- 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 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. - Exceptions when declining requests may be permissible
There are eight where not fulfilling a request for information would not be considered information blocking if specific criteria are met. These criteria should be carefully reviewed. Selected key exceptions are highlighted here.
- Preventing Harm: The provider documents that withholding the requested information will significantly reduce the individually determined risk of harm; and that the information provided may endanger the life or physical safety of the patient. Exceptions for substantial physical, emotional, or psychological harm are allowed when applied to persons other than the patient or as requested by a HIPAA-defined personal representative.
- Privacy: Request would violate HIPPA or state regulations.
- Security: Providers may limit information exchange in order to protect the security of EHI. The practice must have a non-discriminatory policy in writing or a documented case-by-case review.
- 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 EHI or cannot be provided in the manner requested (and then must be provided in a different manner).
- Fees or Licensing: Reasonable costs and licensing conditions are allowed as long as not discriminatory, opportunistic, exclusionary, or other criteria.
Provider/Patient Implications
- 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 for implementing patient portals in your practice, view HealthIT.gov’s . 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. - 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 a better understanding of health conditions, remembered the patient’s care plan, and felt more in control of care. Lastly, be mindful of local laws that may impact if a patient’s , most commonly a parent of a minor, can receive information. For example, a state law may provide an adolescent the ability to seek mental health treatment without parental consent. - You cannot delay results
Expectations about when electronic health information (notes, results, referrals, etc.) 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 health care 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.” - Exceptions to the rule
A provider who engages in practices that prevent individually determined 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. - Reporting process
Anyone can report suspected information blocking via the . The will investigate each claim on a case-by-case basis. If they determine information blocking has occurred, the actor will be referred to the agency through which the disincentive will be applied. Though the AAN advocated for actors to be able to demonstrate corrective action instead of facing penalties, the final rule did not specify an appeals process specific to information blocking; actors that are found to be information blocking are referred to follow the appeals process for the agency that has imposed the disincentive. The AAN will continue to advocate for minimized burdens facing providers and seamless sharing of electronic health information.
Additional Information Blocking Resources
- - Melissa Yu, MD, FAAN, discusses information-blocking rules
- - Published by the AMA as Part 1 of a 2-part education series
- - Published by the AMA as Part 2 of a 2-part education series
Practice Considerations Sharing Notes
While the majority of studies have looked at the 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 releases.
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:
- Top 5: ONC Information Blocking Practice Implications
- Top 5: ONC Information Blocking Provider/Patient Implications
- Additional Resources
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 .
How Will Providers Be Informed?
好色先生 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.