13 May Caregivers Often Lack Access to Medical Records of Adult Patients
MedicalResearch.com Interview with:
Celine Latulipe PhD
University of Manitoba
MedicalResearch.com: What is the background for this study? What are the main findings?
Response: We wanted to find out how many hospitals offer proxy accounts for caregivers of adult patients. Most patient portal systems allow proxy accounts for parents of pediatric patients, so we know the underlying systems support the creation of proxy accounts. When we were starting this research, the two big healthcare systems where I was located did NOT offer such proxy accounts for caregivers of adult patients, and a staff person at one of those hospitals suggested adult patients share their passwords with their caregiver, if the caregiver needed access to the portal.
As a computer scientist, I am well aware of the security and privacy risks associated with password sharing, and I was appalled by this advice. So we did this survey across the US and we found that 45% of the staff contacted in our study gave similar password sharing advice. This is hugely problematic. Caregivers using a patient’s password means the caregiver can see everything in the medical record, including things the patient might not want the caregiver to know, such as past diagnoses of stigmatized illnesses, substance abuse or reproductive health decisions. Also, because password re-use is common across systems, a caregiver with a patient’s portal password may now have access to the patient’s online banking.
MedicalResearch.com: What should readers take away from your report?
Response: Hospitals and other health providers that offer patient portals should do three things:
- First, provide proxy accounts and make the setup of those accounts as easy as possible;
- Second, train staff so that they never encourage password sharing for patient portals;
- Third, ensure that proxy accounts default to quite limited information access, so proxies can’t read patients’ entire medical histories. For patients: use password managers and don’t share your passwords, even with caregivers!
MedicalResearch.com: What recommendations do you have for future research as a result of this study?
Response: We need to understand what caregivers typically need access to, and we need to research how to help older adults easily set up proxy accounts for their caregivers, and set appropriate permissions. If a caregiver is a neighbor who provides rides to doctors appointments, that caregiver probably only needs access to the appointments part of the patient portal, not to the whole medical history. Setting up these permissions could easily become very complex, we need to find ways to make it simple, and to put in checks and balances to ensure against fraud and elder abuse.
MedicalResearch.com: Is there anything else you would like to add? Any disclosures?
Response: I’m in Canada now, and patient portals are just coming online here. There is an opportunity to design patient portal proxy accounts from the ground up and get it right. I hope we can.
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