Oncologists may need to be careful when using patient portals with their older patients. Boston researchers reported that information sharing and control are complex issues in older adults and clinicians may want to be cautious when sharing control of their personal health information with family members.

The researchers conducted a study in which they looked at how patients older than 75 and family caregivers approach sharing health information.

Patient portals can be helpful when it comes to sharing information but some older adults may be more concerned about their privacy and keeping autonomy.

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Researchers found that patients older than 75 in general do not want to feel “spied on” by their family members. In addition, the study showed that control of information sharing is fluid.1

The researchers found older patients wanted to retain control of decision-making as long as possible and transfer of control tends to occur gradually.

“We were surprised to see so many nuances in patients’ preferences for sharing information with their families. We learned that some older patients would try to shield their families from knowing about health problems. This especially seemed true when family caregivers had many competing responsibilities, such as raising their own children and busy work lives,” said study investigator Bradley Crotty, MD, MPH, who is the director of patient portals and associate program director for informatics training in the Division of Clinical Informatics at Beth Israel Deaconess Medical Center in Boston, MA.

He and his colleagues studied 10 focus groups of people older than 75 and family members who care for people older than 75. The study was conducted between October 2013 and February 2014 and it included 30 people older than 75 and 23 individuals who assist an older family member.

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The cohort was drawn from the Information Sharing Across Generations (InfoSAGE) Living Laboratory, an affiliated network of senior housing in metropolitan Boston.

The researchers separated the caregivers from the patients and a professional moderator led groups through a discussion guide.

The study showed that the patients and caregivers have different perspectives on what is seen as “the burden” of information. It also suggested that access to medical information by families can have unintended consequences.

“We found no one-size-fits-all approach to different older patient and family preferences,” Dr. Crotty told Cancer Therapy Advisor. “Decision-making and control of information is dynamic depending on health functional status. Checking in periodically with the elderly patient about their preferences and boundaries is important.”