Health information exchanges (HIEs) are increasingly successful at aggregating patients’ information for providers and hospitals. The Office of the National Coordinator for Health Information Technology’s Final Rule on the 21st Century Cures Act requires HIEs to allow patients to have access to all their data at no cost. The Delaware Health Information Network has already built a patient portal called Health Check Connect. Now is time for all HIEs to do the same.
Patients stand to benefit in multiple important ways from accessing their data via an HIE.
Health Care History is Easier to Share
Patients who receive all their care from one organization with one electronic health record may find little value in an HIE. But patients who see a new provider in a different practice are likely to be asked about their prior health care history. Even if their new provider is not already using the regional HIE, the patient using the HIE patient portal can share their records immediately with the new provider. The ease of that experience may even encourage the provider to sign up with the HIE.
HIEs protect patient privacy by limiting information lookup to providers who have signed a confidentiality agreement. HIEs can further encourage patient trust with the transparency of a portal where patients can see all the data that has been collected on them. Even if they are not interested in their own data, patients may be interested in seeing which providers have accessed their data.
More Control Over Personal Data
Although HIPAA allows HIEs to share patient data among providers and hospitals without the patient’s consent for purposes of payment, treatment and operations, the industry is headed toward more individual consent in data sharing. Patient portals could let patients grant granular access to specific recipients even for sensitive data.
Ability to Incorporate HIE Data Into Personal Health Records
Some patients may wish to download all their HIE provider data to a personal health record (PHR) mobile app. In addition to data from providers, patients can contribute data from other personal apps such as those that track sleep, exercise, nutrition, stress, environment, genomics and microbiomic data.
Not only can PHRs serve as a single source of information for a patient’s new provider, but they can also inform patients directly about specific health risk factors, the initial care of new symptoms and when to seek further consultation with providers. With the addition of extended health-related data in a PHR, researchers would be interested in paying for permissioned access.
Providers’ electronic health records are covered by HIPAA privacy and confidentiality regulations, but HIPAA does not extend to PHRs. Patients need to be careful not to send their data to disreputable parties. Fortunately, certifying bodies now exist for PHRs, so patients can have confidence their chosen PHR will handle their data appropriately.
Applying for Clinical Trials is Simpler
Researchers are always pressed to find more candidates for clinical trials. HIE patient portals allow patients to collect all their data in one place and grant consent to researchers that interest them.
Family Members and Caregivers Can More Easily Assist
Sometimes it is not the patient that would benefit the most from all health information in one place – it is a family member or caregiver. When the patient grants proxy access to their HIE patient portal, family members can help them prepare for provider visits without the struggle of collecting paper records and imaging DVDs.
When patients have access to their health records, it can increase their engagement in their care. And when patients are engaged in their care, it leads to better clinical and financial outcomes. HIEs should include patient portals in their near-term strategic plans.
For another perspective from Dr. Gibson on interoperability, please read his August 2022 blog post, "Health Data Interoperability: We Have the Tools We Need — Let’s Use Them."