Research has shown that older patients often share control over decision-making and personal health information with family members or friends in order to manage medical care issues. However, it can be challenging for clinicians to balance helping patients and their caregivers work collaboratively to manage health information and decision-making while simultaneously respecting the preferences, privacy, and priorities of patients.
To help patients manage their healthcare, patient portals have been developed that connect patients with their healthcare records and oftentimes directly with their clinicians through secure messaging. While portals can be helpful, they may not account for all privacy preferences and offer little guidance on when patients would like to bring their families or caregivers into the fold.
Examining Attitudes & Needs
In previous research, studies have shown that older patients often want control over the privacy of their health information in electronic medical records, but little is known about how this control relates to family dynamics and the use of patient portals. As reported in JAMA Internal Medicine, Bradley H. Crotty, MD, MPH, and colleagues sought to identify how elderly patients (older than 75) and their family caregivers approached sharing of health information. “This is an issue that many physicians will encounter, but there has not been much research on the topic,” says Dr. Crotty.
For the study, investigators recruited participants from the Information Sharing Across Generations (InfoSAGE) Living Laboratory. InfoSAGE is an ongoing study of the information needs of elderly patients and families within a network of senior housing in the Massachusetts area. Participants joined one of 10 discussion groups to explore the issues. Group discussions were then analyzed to identify themes about the attitudes and needs for sharing personal health information and how they changed over time.
Consider the Consequences
According to the findings, there was broad support for sharing personal health information with caregivers if it was believed that such actions would be beneficial to the patient. However, there were concerns from elderly patients about autonomy and control, respect for preferences, micromanagement and snooping, and unintended disclosure of information. In general, caregivers were sympathetic to these concerns and wanted patients to keep their privacy as much as possible.
“One of the key themes that emerged from our study is that sharing medical information between patients and families has consequences,” says Dr. Crotty. “Information sharing is more involved that many clinicians may realize.” The study notes that elderly patients and caregivers have different perspectives on what is viewed as the burden of information (Table). Elderly patients also do not want to relinquish control over their medical decisions to their family or caregivers. Another lesson learned from the analysis was that elders did not want to feel like they were being spied on by their family or caregivers.
A Dynamic Issue
The second major theme emerging from the analysis was that control of information sharing is dynamic. “Older patients generally wish to retain control of their medical decisions for as long as possible,” Dr. Crotty says. “It’s important for older patients to maintain their autonomy.” Independent elders in the study were most concerned about giving up control of their health information and decision-making to their children. Elderly patients wanted to actively decide when sharing would be appropriate and avoid situations in which family members could undermine their decisions.
Dr. Crotty says that decision-making and medical information sharing will be different for each case, depending largely on the health and functional status of older patients. “There is no ‘one-size-fits-all’ approach that will be preferred by all patients,” he says. “It’s also important to recognize that the health of elderly patients can change over time. It’s a fluid situation that requires patients and their caregivers to communicate effectively about how information is to be shared and decisions are to be made.”
Ultimately, sharing information and control is a negotiation between the elderly patient and caregivers. Patient portals like the one from the InfoSAGE study may not account for all of the permutations and preferences that relate to the individual patient and their family dynamics. “It’s important to include the control of personal health information as a part of our efforts to have conversations about end-of-life preferences,” Dr. Crotty says. He adds that policies and procedures should be developed proactively for shared access in the event that elderly patients become sick or disabled to the point where family involvement is required.
Findings of the study also have important implications for the design of patient portals, according to Dr. Crotty. “Many patient portals are currently not capable of addressing the fluid changes in patient preferences that can occur over time,” he says. “Future patient portals should seek to account for this fluidity and the various information sharing preferences of patients.”
Readings & Resources (click to view)
Crotty BH, Walker J, Dierks M, et al. Information sharing preferences of older patients and their families. JAMA Intern Med. 2015 Jul 6 [Epub ahead of print]. Available at: http://archinte.jamanetwork.com/article.aspx?articleid=2363023.
Washington KT, Meadows SE, Elliott SG, Koopman RJ. Information needs of informal caregivers of older adults with chronic health conditions. Patient Educ Couns. 2011;83:37-44.
Hartzler A, Skeels MM, Mukai M, Powell C, Klasnja P, PrattW. Sharing is caring, but not error free: transparency of granular controls for sharing personal health information in social networks. AMIA Annu Symp Proc. 2011;2011:559-568.
Gillick MR. The critical role of caregivers in achieving patient-centered care. JAMA. 2013;310:575-576.