As your parents age, you might have to get involved with their medical care. They might ask for help in navigating care decisions. Or, you might have to manage their care for them if an illness or cognitive decline leaves them unable to themselves.
If you find yourself taking on this responsibility, you might be wondering, “How can I get access to my parents’ medical records?” You’ll need the information in those records to coordinate your parents’ care. However, getting their medical records isn’t as simple as it might seem.
In fact, gaining access is a problem family caregivers often encounter, says Jean Ross, RN and co-founder of Primary Record, an app to organize and help share health records coming in early 2023. “As someone ages, there’s never this question of ‘Would you like to add your son or daughter to your medical records?’” she says. It’s up to the patients to let their medical providers know they want their medical information shared with someone else.
If your parents are no longer capable of providing consent, there still are ways to gain access to their medical records. Here are the steps you need to take if you're not sure how to get parents’ medical records and why it’s worth the trouble to get this information.
Why is it important to keep medical records?
You might have a general idea about your parents’ medical history from what they’ve told you or what you’ve learned from going to appointments with them. However, their medical records will provide you with a more complete, accurate picture. They will include the following information:
- Self-reported patient information
- Doctors’ appointment notes
- Medical history
- Health conditions
- Signs of illness
- Blood type
- Allergies and adverse reactions
- Prescribed medications
- Screenings, scans and test results
Having this information will help you ensure that your parents get the best possible care. You can help them follow their treatment plans, take the medications they need and stay current with screenings and immunizations.
If your parents are seeing multiple doctors, you can make sure all of their providers have the information they need to treat them. More importantly, you’ll be able to share specific information about their health. “If you say, ‘Dad has a heart problem,’ doctors don’t know how to help,” Ross says. “The caregiver is responsible for the story of what is happening.” So it’s important to have documentation and to clearly communicate your parent’s medical history.
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Medical records and the HIPAA Privacy Rule
Ross says it’s common for caregivers to assume that they should have automatic access to their loved one’s medical records. However, the Health Insurance Portability and Accountability Act of 1996 (HIPAA) created specific guidelines for how patients’ medical information can be shared.
Under HIPAA, health care providers can share or discuss patients’ health information with their family, friends or others involved in their care—as long as patients don’t object. However, providers may discuss only the information that family and friends need to know about patients’ care.
To share health records with family, patients typically need to sign a HIPAA disclosure form that identifies what records to share and the person who can receive them. Patients also can grant family members or caregivers what is called proxy access to their health information on patient portals so they can see records online, Ross says.
Problems arise when patients are no longer able to sign HIPAA disclosure forms or grant proxy access on their patient portal. To access your parents’ records at that point, you need to be their health care power of attorney. They must be mentally competent to sign a health care power of attorney document naming you as their proxy to make medical decisions for you. If they haven’t already drafted a health care POA and are no longer competent, you’ll likely have to go through court proceedings to be named their guardian.
How can I get access to my parents’ medical records?
Your parents can ask their health care providers for HIPAA disclosure forms to name you as a trusted person who can receive their medical records. Once that form is on file, you should be able to ask for your parents’ records if you are at the office with them. If you call the office to ask for records, be aware that it could take a while for your request to be fulfilled, Ross says.
If your parents are using their provider’s online patient portals, help them log on and click the settings or profile tab to find a proxy access/shared access/managed access option. They can click on that option and add you as their proxy. It might generate a code that they will have to share with you to gain access, Ross says. Or it might email you to alert you that your parents’ have shared access with you.
If they have trouble adding you as a proxy or don’t already have access to their patient portal, have them call the provider’s office when you also can be on the call and ask for assistance in granting proxy access.
If your parents are no longer capable of granting you proxy access or giving consent for you to access their records, Ross recommends calling their provider’s office to explain the situation and to ask how to get proxy access. To be given access, you’ll need to be your parents’ health care power of attorney or court-appointed guardian. Ask what legal paperwork the office needs to prove that you are your parents’ personal representative. Then ask to be walked through the process of setting up proxy access to their patient portal.
It might take multiple calls, patience and persistence to get the assistance you need and to gain proxy access.
Why online access is better than paper records
It’s worth the effort to get proxy access to your parents’ patient portals rather than just rely on paper documents. For starters, it’s an easy way to have the information you need at your fingertips. Plus, there’s often more information in patient portals than what your parents’ doctor might hand you on paper at an appointment because doctors often type up more notes in portals after appointments, Ross says.
Having access to your parents’ patient portals also will allow you to receive alerts about upcoming appointments and to easily communicate with your parents’ healthcare team. In fact, you can send messages to your parents’ doctors through patient portals about issues you might not want to bring up in front of your parents during appointments you attend with them, Ross says.
Bottom line: Having access to your parent’s medical records will make it easier for you to coordinate their care and ensure they are getting the care they need. It’s best to get proxy access to their patient portals—even if you have to jump over several hurdles to do so.
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