Allow portal access for caregivers

According to the AARP and National Alliance of Caregiving, approximately 63 million people across the United States, or one in four adults, are family caregivers for an adult or child. ⁶⁴ They provide care at home and drive children or parents to the doctor or emergency room. They also coordinate care and update health information across clinical settings and specialists, school clinics and independent living facilities, in person and remotely by telephone or email. Sometimes they help patients to overcome health literacy or health IT literacy difficulties.

Likewise, allowing family members and family caregivers, and sometimes friends and neighbors, to access one’s patient health information through a portal is becoming much more common. In 2019, non-federal acute care hospitals reported offering this access to 89-90% of patients’ designated caregivers across inpatient and outpatient settings. ⁶⁵ The number of caregivers who used the portal to access the patient’s health information doubled from 2020 to 2024, from 24% to 51%. ⁶⁶

Laws like the Health Insurance Portability and Accountability Act (HIPAA) are designed to keep patients’ medical records and personal health information private and secure. At the same time, HIPAA allows family caregivers— also known as personal representatives—to have proxy access to and use of a patient’s health information, ⁶⁷ because in many situations, it is appropriate or necessary for a family member, friend, or other caregiver to have access to a patient’s health information so that they may coordinate, deliver, or oversee care. To facilitate and encourage caregiver access, clinicians and practice administrators will also want to follow federal and state laws related to proxy access.

Similarly, federal regulations require that ONC-certified electronic health records and certified health IT must allow patients—and patient-authorized representatives, such as family caregivers—to access, view, download, and transmit a patient’s health information. ⁶⁸

Under HIPAA, a patient’s personal representative (someone authorized under state or other applicable law to act on behalf of the patient) has a right to access the patient’s personal health information. The patient also has a right to allow their personal representative to share this information with someone else, like a doctor or hospital. ⁷⁰

Examples of family caregivers and others who may need to access patient information for specific reasons include:

• A parent of a minor child to coordinate visits to the child’s pediatrician or an emergency room, and provide relevant information about the child’s health and immunizations to schools and summer camps
• An adult child of a parent or parents who request or need help with their health care
• A home health aide to a chronically ill patient
• A health care power of attorney responsible for an incapacitated patient’s medical decisions and care ⁷¹
• Anyone the patient authorizes under a durable power of attorney for health care
• A family member or other personal representative who needs health information about a deceased family member

The opportunities created by caregiver access to patient portals include: ⁷²

• Enabling providers to differentiate with whom they are exchanging secure messages: the patient or someone else involved in their care
• The ability to respect patient preferences for including others in their care
• Improved transitional care by providing family caregivers with timely, accurate, and comprehensive information after patients have been discharged from the hospital, including the doctor’s or hospital’s discharge instructions
• Greater collaboration between clinicians and family caregivers
• More impactful involvement of caregivers in patients’ self-management plans
• Greater information transparency, which enables family caregivers to alert clinicians to missing or inaccurate information in patients’ health records

Fully integrating and implementing family caregivers’ shared access to patient portals is a major step in patient engagement. It has the potential to increase clinical quality and patient safety, expand shared care planning, improve health system interactions, spot errors and omissions in the patient’s health record, and strengthen partnerships between patients, caregivers, and clinicians.

Tips for Practice Administrators ⁷³

Practice administrators can take steps to enable caregivers’ access.

• See if your EHR vendor allows providers to set varying levels of access to a patient’s portal information to enable family caregivers to access, view, download, and transmit their health information
• Work with your EHR vendor to make sure you can give each personal representative a unique, secure login to access the patient’s portal
• Make sure that staff and clinicians understand registration processes and timelines for granting shared/proxy access — and identify practice workflows for implementation, including when registration happens, how it happens, who is involved, etc.
• Make sure that patients and family caregivers understand these registration processes and timelines, and how to use proxy access, perhaps as part of welcoming new patients and annual reminders for existing patients
• Consider strategies to promote awareness about the availability of shared/proxy access among your patients, staff, and clinicians, including why it’s important to access patient’s health information the right way, and how you’ll get the access you need

Tips for Clinicians

Clinicians play an important role in encouraging and even managing caregivers’ access.

• Talk regularly with your patients to find out who else is involved in their care and needs to stay informed about their treatment plan
• Ask your patients about their preferences for giving their family caregivers access to their health information (HIPAA generally allows a provider to share health information with family members or friends involved in the patient’s care unless the patient objects) ⁷⁴
• When a patient makes a request or circumstances warrant, customize caregivers’ access to the patient’s portal information, such as age-based restrictions for adolescent health information or restricted access for sensitive information like psychotherapy notes and pregnancy tests

Many patient portals still offer a one-size-fits-all approach to information access where family caregivers, friends, neighbors, and others with the right login see the full medical record in the patient portal. Some patients share their own login credentials with their family caregivers, but this gives family caregivers access to the patient’s portal information — including being able to view the patient’s private messages to or from clinicians. What does the patient prefer?

An environmental scan of 20 large and geographically diverse health systems found that the majority of them give caregivers full access to patient portal information and features, yet the researchers also reported that patients’ preferences for sharing their health information with others involved in their care vary widely. The study indicates that there’s still much to be done in both promoting awareness and differentiating levels of access that respect patients’ choices and control of their health information. ⁷⁵

As noted above, family caregivers’ relationship with the patient can vary, and their respective need for and use of the patient’s health information—and the patient’s preferences—might vary, too. Examples include the personal representative under HIPAA, someone named as a power of attorney for health care, the parent of a teenager with reproductive health data, and someone needing information to help finish the next steps after a loved one dies.

Establishing different levels of access can help you balance the competing needs of patient privacy and caregiver access. Giving caregivers their own unique login to the portal has other advantages beyond respecting patient privacy. It can also:

• Increase security by tracking the portal use of each individual, instead of a caregiver using a patient’s credentials ⁷⁶
• Increase the amount of meaningful data available to learning health systems by capturing both patient-reported and caregiver-reported data ⁷⁷

Tip for Practice Administrators

• Allow patients and their representatives to see different information and access different features, depending on a patient’s needs and characteristics as well as relevant laws.

Family caregivers can be involved across the arc of a person’s care and health history: the mother who recently delivered a newborn infant, the parent taking care of a minor child, the partner taking care of a spouse with cancer, the adult managing the care of a parent with Alzheimer’s disease, or the friend or neighbor helping with the care of someone with multiple chronic conditions. Accordingly, family caregivers might have a wide range of health information to share with clinicians and practices about the patient’s health, shared care planning, and health goals. Family caregivers can share this information by completing forms, sending updates and questions through secure messages, remote monitoring, reporting services by community or social service organizations to redress social drivers of health, even scheduling appointments.

Your patient portal can be an efficient and effective way to integrate much of that information across your patient population and their varied circumstances, especially if you design it and implement it with those capabilities in mind. This, in turn, can reduce the burdens on your practice to collect and record this information during office visits and telephone calls. Note that these features focus on and aid caregiving and care planning, but they are also examples of integrating patient-generated health data more broadly. Consult Chapter 6 of the Patient Engagement Playbook on patient-generated health data to learn more.

The common clinical data set in your EHR is called the U.S. Core Data for Interoperability (USCDI). Among many others, the USCDI includes data elements specifically about caregivers and care planning.

• A Care Team Members data class allows your practice to collect and integrate the name, role, location, and telephone number of care team members, including family caregivers.
• A Care Plan data class allows your practice to collect and integrate a shared care plan informed by members of a coordinated care team—including family caregivers. Care Plan data details conditions, needs, and strategies for addressing these conditions. These data also include problems, health concerns, assessments, goals, and interventions from across care settings.

End-of-life planning, or advance care planning (ACP), is another way that patients provide critical decisions about their health goals and care, including using family caregivers. Often called advance directives, they have been shown to increase patients’ satisfaction with their health care and improve quality of life for people with a terminal illness. ⁷⁸ But completing and documenting this process can be challenging for both patients and clinicians.

Patient portals can help with advance care planning discussions and boost patient satisfaction. ⁷⁹ If your portal includes an ACP feature, consider promoting it to your patients. In lieu of that, some systems include the ability for patients to securely upload documents. If that’s an option, invite patients to add a PDF copy of their plan to their electronic record. Patients could also add a PDF copy of a durable power of attorney for health care, which designates and authorizes someone else, such as a family caregiver, to make decisions for the patient when the patient cannot.

Here again, USCDI can help practices collect and integrate this information for clinical use.

• A data class on Goals and Preferences includes a data element to record the existence of an Advance Directive and its location, content, type, and verification status. It also includes data elements to record the patient’s treatment intervention preferences and care experience preferences.