By Nargiza Noimann Zander, Founder, X Technology
LinkedIn: Nargiza Noimann Zander
LinkedIn: X Technology
An adult patient may rely on a daughter to book appointments and read test results, yet want to discuss a change in mood without involving her. Both preferences can be reasonable. A portal that treats them as incompatible asks the patient to choose between practical support and privacy.
For healthcare organizations, this is a design question with consequences for communication. Before inviting a patient to complete a sensitive questionnaire or send a message, the system should help them understand who can see the response and how to request a private conversation.
Access can change what a patient feels able to say
The federal health IT office’s analysis of the 2024 Health Information National Trends Survey found that reported access to another person’s online medical record for caregiving or health decisions rose from 24% in 2020 to 51% in 2024. Caregiver access deserves attention as an ordinary part of digital care.
A 2018 qualitative study in the Journal of Medical Internet Research illustrates the tension. Researchers interviewed 10 older adults with chronic illness. Participants recognized benefits from caregiver access, while expressing concerns about disclosure of stigmatized conditions and financial information. Among participants whose caregivers accessed the portal, access was through shared credentials rather than official proxy accounts. This small study cannot establish how common those concerns are today. It shows why accepting help does not settle every question about sharing.
Consider an illustrative situation: a patient receives a questionnaire about emotional wellbeing while a relative routinely manages the account. Before answering, the patient may need to resolve a question the clinical team never intended to ask: will my family read this? An incomplete questionnaire cannot explain that concern by itself.
Make visibility understandable before asking for information
An access permission may be technically documented while remaining difficult for a patient to understand. During enrolment, teams should explain what the current arrangement means for messages, questionnaires, notes and notifications, using examples from their actual portal.
A useful check is to ask the patient to describe who they expect to see a message. A discrepancy between that expectation and the configured access is something to address before collecting sensitive information.
Separate proxy credentials, where available, can distinguish the person receiving care from the person helping them. The federal Patient Engagement Playbook discusses differentiated access and individual caregiver logins. These functions still require a clear explanation. A separate login alone does not tell the patient which information remains visible.
Organizations should avoid describing a message as private unless the actual workflow supports that description. Patients need an accurate account of visibility, including relevant limits, rather than reassurance based on how staff assume the portal works.
Offer a private route that the patient can actually use
The team should identify how an adult patient can request contact separately from a helper. Depending on the service, that might involve a private part of an appointment or a call to an agreed safe number. The route needs to work for someone who relies on another person for digital access.
It also needs operational scrutiny. Could a confirmation, appointment label or message preview reveal the subject of the conversation? Can staff confirm a safe contact method directly with the patient? These questions should be tested against the local system before anyone promises confidentiality.
Arrangements involving legal representatives, decision-making capacity or safeguarding require the appropriate clinical and legal processes. The design goal is to make the available choices understandable within those requirements. Staff should not improvise access restrictions or assume a request for privacy establishes a safeguarding concern.
Review the arrangement as circumstances change
Help organized during an acute illness can continue after recovery. A relative’s involvement may also increase over time. A brief review gives the patient a chance to confirm whether the arrangement still fits, where they can make that choice.
Teams can test this through a practical walkthrough: can a patient understand current access, request a separate conversation and learn how to change permissions? Can staff explain what will happen next? Testing should involve patients who use caregiver support as well as those who use the portal independently.
Caregiver involvement can make digital care possible. Its success should include preserving the patient’s ability to speak in their own voice, including when they want to speak alone.