Patient portals are secure Web sites that provide access to health data and communication with the clinical team. Patient portals can be a hub for families.
However, they also can lead to a transfer of control from the patient to the family member. Currently, there are a record number of adults older than 75 who are cancer survivors.
The risk of cancer increases with age and the American Cancer Society estimates that 45% of cancer survivors are 70 or older and only 5% are under the age of 40.2
Dr. Crotty said some older patients don’t want the aggressive therapies their family member wants. Oncologists see this commonly in their practice.
“We learned that some older patients would not disclose biopsies or even some diagnoses with family. Patients were quite aware that sometimes families might want more aggressive approaches to care, and would try to keep information away from families to head that off,” said Dr. Crotty.
“Conversations about advanced care planning should include mention of information sharing preferences, such as access to patient portals, medical records, and communication with clinicians.”
In the study, 87% of the patients and 70% of the caregivers were women. The study showed that 60% of patients used the Internet daily or almost daily and 96% of the caregivers reported similarly high Internet use.
Jeremy L. Warner MD, MS, who is an assistant professor of medicine and biomedical informatics at Vanderbilt University Medical Center in Nashville, TN, said this study is somewhat skewed by the fact that the participants were predominantly women, white, and well-educated.
“The sample size was also small but this type of qualitative research is very time-consuming and given their careful methodological approach, the sample seems reasonable for the time frame that they had. The finding that there is no one-size-fits-all [approach] to information sharing with the elderly is not too surprising to me. What was surprising is that the elder population was actually fairly tech-inclined,” Dr. Warner told Cancer Therapy Advisor.
Dr. Warner, who is also the chair of the American Society of Clinical Oncology’s Health Information Technology Work Group, said the findings are important because there is little research so far in this field.
Patient portals are growing in numbers and oncologists must be keenly aware of how disclosures may have unintended consequences.
RELATED: Older Adults with Head and Neck Cancers May Need More Cautious Treatment Strategies
Dr. Warner said when it comes to cancer, the problem of data liquidity is currently a bigger problem than information sharing.
He said patients with cancer often have multiple providers at multiple institutions as well as an extensive network of caregivers during different phases of their illness.
“Although it is very important for an autonomous older patient to be able to choose who has access to their information and when, it is just as important for patients with cancer that they have uninterrupted access to all of their data,” said Dr. Warner.
“Oncologists should be aware that patients are beginning to expect their data as part of their care. With movements such as Open Notes, Blue Button, and the Meaningful Use requirements to share data with patients, there is now the mechanism for patients to begin to share their information with loved ones and other caregivers.”
He said a discussion of a patient’s information sharing desires, especially patients who are older, should become an essential part of the oncologist’s history and physical.