Caregiver Rights to Health Data
When we start caring for a loved one, we instantly become the chief administrator of all their health information. We need to collect and organize records of past diagnoses, vitals, test results, lab results, medications, and much more. Very quickly records become folders. Folders become binders. Binder become files cabinets, computer hard drives, and flash drives.
At some point we realize that we may not have the full picture and our loved one may not be able to help. We need to call current and past medical providers and clinics to get the full picture. We may even need to contact the health insurance company or Medicare/Medicaid.
Right to access your records
First and foremost, we all have the right to get free access to our health information. This right is afforded us by the Health Insurance Portability and Accountability Act (HIPAA). Our records must be provided in an electronic (or other portable format) at no charge. This includes radiology images, test reports, and any documentation that may be used for continuity of care. You can learn more about HIPAA and these rights on the Health and Human Services (HHS) website, Individuals’ Right under HIPAA to Access their Health Information | HHS.gov.
Right to access your loved one’s records
As a caregiver, you will need unfettered access to your loved one’s healthcare information. Your right of access is based on your loved one authorizing you to act on their behalf. The best way to become authorized is by having your loved-one sign a Medical Power of Attorney (MPOA). This document can specify your role, the actions you are authorized to take, and the amount of time that the MPOA is valid. Every state has different rules on what needs to be in this document and how it needs to be executed. You can do a web search by state to find the right form. Most major clinics or hospitals will have a properly formatted MPOA for their jurisdiction and will usually help you execute it.
Exercising your loved one’s rights
Once you have an executed MPOA, make lots of copies and be sure to file them with each of your loved one’s healthcare providers, pharmacies, and their insurers. It will be helpful to keep a scanned copy on your cell phone, so you may present it on demand. You may also request access to the patient portal at your loved one’s provider and insurer. Alternatively, you and your loved-one have the right to use your own health record application to access these medical records. This right is provided by the 21st Century Cures Act and the Office of the National Coordinator (ONC) Final Rule which states that you have the right to use the application of your choice to retrieve and manage your health records. You may learn about this right by visiting the ONC website: What ONC's Cures Act Final Rule Means for Patients (healthit.gov)
Having an executed MPOA is also helpful to providers. It will allow them to discuss their concerns with you openly, allow you to schedule appointments, to retrieve healthcare information from other providers, and help with insurance claims and pre-authorizations. In short, with the MPOA you are now a contributing member of the care team.
Marc Mar-Yohana is Founder & CEO of OtisHealth, a free application designed to help caregivers manage their loved-one’s health, by guiding the creation of a full health record. Caregivers can upload or retrieve any medical record, add their own records, log daily vitals, and share information with healthcare providers, placing critical health information at their fingertips.