HIPAA (the Health Insurance Portability and Accountability Act of 1996) is one of the most frequently used terms in healthcare but it’s also one of the most misunderstood. While patients have had the right of access to their health information since HIPAA’s creation, the reality is, most patients continue to struggle to get access to their medical records and health information.
On April 5, 2021, the Office of the National Coordinator for Health Information Technology's (ONC) information blocking rules became effective as part of the 21st Century Cures Act. The goal of the information blocking rules is to get more health information into the hands and lives of patients, including, providers sharing consultation and discharge summary notes, history and physical notes, imaging, laboratory, and pathology notes as well procedure and progress notes.
Many physicians and caregivers have expressed concerns, frustration, and resistance to the implementation of the information blocking rules. The floodgates of patient data are opening. Having a good understanding of what information blocking is and how to prevent it is a critical first step. Internal workflows and communication strategies will also need to be updated to improve patient access as well as to reduce potential confusion and friction.
These five tips will help make this transition to modern healthcare data exchange smoother while strengthening the caregiver-patient relationship:
1) Patient Rights— Let patients know that they have a right to access their results and health information as per the information blocking rules. As of April 5, all healthcare providers, certified health IT developers, and health information exchanges (HIEs) must follow the regulations and share the data classes and elements designated by the United States Core Data for Interoperability (USCDI). It is important to be aware of generational and cultural differences where individuals may not feel comfortable asking their doctor for access to their health information. Remind patients it is their right! That right will include having health information sent to a health app of one’s choosing. Don’t forget to offer basic information on patient privacy when using health apps. Patients need to be aware that apps may harvest personal data and that apps are not covered by HIPAA.
2) Don’t Be Mad, Get Glad— Don’t get angry that patients are accessing their results and asking questions. Patient engagement is not about counting the number of clicks or minutes spent reading content or perusing a website. Patients taking charge of understanding their health information is real patient engagement and partnership in medicine! Recognize that patients’ interest in their results and health information is important to their success in managing their healthcare. Teaching patients and their carepartners about the importance and power of their medical records is a necessary step in supporting patient engagement, patient safety, and continuity of care.
3) Manage Expectations— When providers order a test, procedure, or surgery, patients need to understand what potential outcomes may be and what results may or may not be shown. Address what to expect if, for example, a biopsy result shows cancer and the next follow-up appointment isn’t until a week later. How should patients best move forward if there is an alarming result? Who should they contact at the practice? Advise if you will not be able to discuss alarming results over a call immediately or if it will require an in-person or virtual visit. Managing expectations when ordering specific tests and procedures is essential to the doctor-patient relationship.
4) Patient Preferences— Ask patients what their preferences are with respect to getting their test results and health information updates. Patients may wish to have access to immediate results once they are posted in the patient portal. Some patients may not. Whether it’s routine bloodwork or imaging or pathology results, many patients do want to know the intricacies of their reports. Some patients may wish for an in-person conversation. Make sure to include patients’ primary carepartners and advocates in the discussion about receiving results. Some patients may not want to receive their results but would like their carepartner or advocate to do so.
5) Patient Accessibility and Inclusivity— Does your patient need accessibility tools or accommodations, such as screen readers or a language interpreter in order to be able to access their results? Be sure your practice and workflows support the needs of ALL patients.
Addressing greater patient access to healthcare information proactively and earlier in the doctor-patient relationship can help better prepare and empower patients while reducing unnecessary friction and uncertainty.
For more information about how healthcare providers can align their patient communication strategies to the latest patient communication preferences, check out the white paper, "Patient Communication Preferences in 2021."