Researchers conducted a study to examine how patients older than 75 years old and their caregivers view the sharing of healthcare information. Through conversations with patients and their caregivers, researchers identified seven key lessons within two larger themes: the consequences of sharing information and the control of information sharing.
The consequences of sharing information
1. Elder patients and their caregivers have different ideas about the “burden” of sharing information. While elders tend to be concerned about their family caregivers having to take on the burden of their health issues including the use of IT tools, the caregivers are seeking out that information as a way to relieve the patients’ burdens.
2. Elder patients tend to have privacy concerns about sensitive information in their records that is available to caregivers through patient portals.
3. Elder patients don’t want to feel like they are being spied on by their families, according to researchers. Additionally, elders value their independence and voiced concerns of that independence being compromised through the accessibility of information through devices.
The control of information sharing
4. Elder patients voiced a desire to maintain control of their decision making for as long as possible.
5. Transferring decision making control is a gradual process that depends on the patient’s health and functional status.
6. The transfer of control should be a fluid and dynamic process that is dependent on the current context, patients and caregivers tended to agree. Furthermore, it should be done so in a way that maximizes the patient’s autonomy.
7. There is no one-size-fits-all approach to information sharing, as it varies by each situation and the patient/caregiver relationship.
“Information sharing and control are complex issues even under the most well-meaning circumstances,” researchers concluded. “While elders may delegate control and share information with family, they want to retain granular control of their information. When using patient portals, simple proxy access may not adequately address the needs and concerns of aging patients.”
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