Patient portals can be a helpful way to share older adults' health information with their caregivers, but privacy and autonomy issues indicate that full access by proxy may not be the best approach, according to a new study in JAMA Internal Medicine.
The researchers, from Beth Israel Deaconess Medical Center and elsewhere, conducted 10 professionally moderated focus groups from October 2013 to February 2014 as part of a broader inquiry regarding the information needs of the elderly and their caregivers. They found there to be "broad support" in general for information sharing if it benefited the older adult, but the elders and caregivers had different perspectives.
For instance, while caregivers wanted access to information to reduce their own stress levels and be helpful, elders resisted sharing because they didn't want to burden their caregiver family member with the information.
Elders also expressed concern about allowing caregivers to access to all of their information, such as a past biopsy, or be "spied on" via use of the portal. They also wished to maintain control of their healthcare decision making as long as possible, only giving that up gradually as their health and functional status declined.
The researchers noted that control of information sharing and decision making should be more fluid and that the study had importance implications for portal design, such as more role-based access rather than full access by proxy.
In a related commentary, authors from the Stanford University School of Medicine suggested that the findings represent a "call to action" to use more user-centered design for portals, taking into account variables such as individual preferences, relationships, situations and health conditions.
"[O]ne size does not fit all with regard to health information sharing and portal design for elders and caregivers," the commentary's authors state. "To address this issue, we must observe these individuals in the appropriate context, as they interact with healthcare professionals and each other, and especially as they interact with the information and systems that we seek to develop to meet their needs."
Other studies have found patients challenged by portals and significant disparities in portal registration and use, particularly among older adults.