Most Cancer Patients Like Full Access to Records

Cancer patients who were given full access to their medical records at the beginning of treatment said the records helped them understand and discuss their disease with others, and they weren't any more anxious than other patients in a new study from France.

While there has been a trend toward increasing patients' access to their own medical information, some doctors fear that giving full records to patients will increase their anxiety, the authors note in the journal Cancer.

But Dave deBronkart, a prominent blogger on patient involvement since his own recovery from advanced kidney cancer, argues that full access is helpful.

deBronkart, who blogs as "e-patient Dave," told Reuters Health by email, "Detailed information on the disease is important for the patient to make informed decisions. It also allows the patient and family to cope better."

Participants in the new study included about 300 patients who had been recently diagnosed with breast cancer, colon cancer, and lymphoma, and were beginning treatment with chemotherapy.
Dr. Gwenaelle Gravis of the Paoli-Calmettes Institute in Marseille and colleagues randomly assigned those patients to two groups.

In one group, patients received information in the usual way for their institution—doctors could give patients their medical records if they chose to, and patients could request to see the records on their own. In the other group, all patients who accepted were given their full medical records in a briefcase along with a user guide, and were told to carry the briefcase to appointments so that records could be continuously updated.

At the beginning, middle and end of treatment, researchers questioned patients about their level of anxiety. They also gave participants a survey about their quality of life, and asked them about their treatment experience and understanding of their disease.

Anxiety levels were not different between the groups at any time during treatment, and patients in both groups also reported a similar quality of life at the beginning and end of chemotherapy.

Although more patients who were given their full medical records said they were completely satisfied with the information they received and felt fully informed, that trend did not pass statistical tests to show a difference between the groups.

The majority of patients who received their full medical records said the records helped them to understand their disease more thoroughly and to discuss it with relatives and doctors.

About 70 percent of them said that if they had the choice to go back, they would receive their full records again.

A few patients did complain that the briefcase with their records was too heavy to carry around, or that "its color was inadequate," and a few others said they didn't have enough information, or that it was hard to organize the information that was there.

Gravis and colleagues noted that giving patients full access to their medical records could help foster trust in their doctors over the long run, and that it was easy to do.

deBronkart said he's "getting sick of people in the establishment who, regardless of what patients say we want, think it's in our own best interest if they make that decision for us."

"There is evidence that the majority of cancer patients would like to receive as much information as possible," he added.

The authors cautioned that most of the patients had early-stage cancer with a good prognosis, and the results might not apply to sicker patients with different types of cancer.

Peter Schmidt, Chief Information Officer at the National Parkinson Foundation who was not involved in the study, added that it may also be helpful for patients to have access to a "medical records counselor," as some records may have confusing information.

The researchers said that more study is needed on patients' responses to full medical record access in other settings and circumstances—including in the context of electronic medical files, which could allow patients easy, confidential access at home.

They concluded that in this study at least, "Allowing full access to personal medical records increased satisfaction without increasing anxiety in patients with newly diagnosed cancer."