Medical Record Access -- What's Gained by Cancer Patients?

Nick Mulcahy

June 1, 2011 — Allowing cancer patients to access to their medical record increases their satisfaction without increasing anxiety, according to a report from French researchers.

The study, published online May 23 in Cancer, involved 295 patients with newly diagnosed cancer. They were randomized to receive either usual care (medical information upon request) or their entire organized medical record, which came in the form of a briefcase full of detailed documents about their condition and treatment.

Anxiety levels and quality-of-life scores were similar in the 2 groups, report the authors, led by Gwenaelle Gravis, MD, from the Paoli-Calmettes Institute in Marseille, France.

Patients who received their organized medical record were more likely to be satisfied with their medical information and to feel fully informed than those in the usual-care group. However, the differences were not statistically significant.

An American geriatrician specializing in palliative care thinks that this is an "interesting" study, but suggests it is "slightly off the mark."

"While it analyzes patient assessments of their own feelings and 'understanding', it doesn't assess the more important element in my mind: What do they actually understand? There can be big gaps between what people think they know and what they actually know," said William Dale, MD, PhD, from the geriatrics and palliative medicine and hematology/oncology sections at the University of Chicago in Illinois.

Dr. Dale, who was not involved with the study, also told Medscape Medical News that the study is ironically "reassuring about what the doctors and others are already doing."

"Does the complete medical record provide any more information than the doctor and other personnel do already? Their data suggest no — there are no statistical differences between the 2 arms," he said.

Giving patients access to their record is just the beginning of their information needs, suggested Dr. Dale.

"I'm all for providing 'full access' to data, but I think patients like to have someone they trust, like a physician, help them understand the data in a straightforward way that weeds out the 'useless' stuff," he said.

Anxiety Measure — Insightful?

The patients in the study were all recently diagnosed with lymphoma or breast or colon cancer and were being treated with chemotherapy.

Patients who received their organized medical record were advised to bring their briefcase to each visit so that it could be updated. The contents included administrative information and nurse narratives; reports on surgery, pathology, radiology, biology, and hospitalizations; and more general information concerning the patient's treatment.

Patients received a medical lexicon, a user guide to the documents, and help from medical staff to understand the organized medical record. Most of the patients (98%) who were assigned to the group that had full access to their medical record chose to obtain their complete information.

A multivariate analysis of determinants of patient satisfaction with explanations about treatment found that having access to the organized medical record was more likely to be associated with satisfaction (odds ratio [OR], 1.68; 95% confidence interval [CI], 0.98 to 2.90) than other variables. Another multivariate analysis found that access to the medical record was associated with feeling fully informed (OR, 1.86; 95% CI, 1.08 to 3.19). However, neither finding was statistically significant in relation to the other variables.

The study authors report that 70.4% of the patients who received an organized medical record said that, in hindsight, they would choose again to receive it, and 74.8% did not regret their choice.

The majority of patients declared that they did not discover any unwanted information and that the organized medical record had not been a source of anxiety for them.

However, Dr. Dale questioned the way anxiety was measured in the study.

Anxiety has to be measured when it matters.

Anxiety has to be measured when it matters — during a decision point. The majority of these patients aren't at a decision point — they are in the midst of treatment. It's not surprising to me that a generic anxiety measure didn't change," he said.

Dr. Dale further commented on his reluctance to be swayed by the study's general anxiety measure.

"Anxiety is a tricky thing to measure. It fluctuates a lot based on circumstances. We have found that 'targeted' anxiety is most relevant in a medical context; people are anxious about very specific things (like their specific disease or a specific lab value), not 'in general.' It would have been better to ask about anxiety [related to the] cancer diagnosis or treatment or, perhaps, the access to medical information," he said.

Most patients in the study said that the medical record allowed them to understand their disease more thoroughly and discuss their condition with their relatives and physicians.

"Information is crucial to make decisions regarding treatment options and, for the patient and his family, to better cope with the disease and its implications," said Dr. Gravis in a press statement. "Having full access to his own medical record, with the possibility to consult it only if desired, increases the patient's trust in the physician and medical team," she added.

Cancer. Published online May 23, 2011. Abstract