Elderly Patients Seek Control over Health Information

Elderly patients want to retain granular control of their health information to preserve autonomy and shield children from worry, according to a new study.

Researchers at Beth Israel Deaconess Medical Center (BIDMC; Boston, MA, USA), Hebrew SeniorLife (Roslindale, MA, USA), and the RAND Corporation (Pittsburgh, PA, USA) conducted a study to identify how patients older than 75 years and family caregivers of such patients approach sharing of health information, with the hope of applying the results to collaborative patient portals.

To do so, they invited 30 participants older than 75 years and 23 family members who assisted them to join discussion groups; the groups were separated into elders and caregivers to allow for a more detailed discussion. A professional moderator led the groups, using a discussion guide, and the discussions were audiotaped, transcribed, and analyzed inductively using immersion/crystallization methods for central themes regarding sharing of health information between elderly patients and family caregivers. The results revealed that two main themes dominated the sharing of health information.

First, that sharing information has consequences, including different perspectives on what is seen as the “burden” of information; that access to medical information by families can have unintended consequences; and that elders do not want to feel “spied on” by family. The more independent elderly patients did not like the idea of losing control of their decision-making abilities and having to rely on their children. They were willing to share information, but reluctant to cede control of the information flow or give up the ability to make their own choices about treatment.

The second main theme that emerged was that control of information sharing is dynamic, in that elders wish to retain control of decision making as long as possible; that transfer of control occurs gradually depending on elders’ health and functional status; that control of information sharing and decision making should be fluid to maximize elders’ autonomy; and that no “one-size-fits-all” approach can satisfy individuals’ different preferences. If elders did have to give up control, they wanted this to happen gradually, starting perhaps by only sharing information in an emergency rather than as a routine on a day-to-day basis. The study was published on July 6, 2015, in JAMA Internal Medicine.

“Information sharing and control are complex issues even under the most well-meaning circumstances. Respecting and preserving the autonomy of the elder is critical,” concluded lead author Bradley Crotty, MD, director of patient portals in the division of clinical informatics at BIDMC, and colleagues. “Elders and families should have honest discussions about preferences for information sharing and decision-making, and share these conversations with healthcare providers.”

Related Links:
Beth Israel Deaconess Medical Center
Hebrew SeniorLife
RAND Corporation