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Two Studies Find that Patients Want Access to their Health Records, Including Clinical Pathology Test Data

Patients are ready to ready access to their medical records; but physicians are wary

Data from two studies here in the United States affirms that patients want access to their health records. Consequently, health systems are increasingly making it easier for patients to get access to prescription lists, medical laboratory test results and now even doctors’ notes.

These findings are important for clinical laboratories and anatomic pathology groups. Laboratory test data typically makes up 70% of the information contained in patient’s health record. The growing interest on the part of patients to have access to their health records creates an opportunity for labs to add value by helping patients have access to their laboratory test results.

Of course, in providing that access, labs must comply with applicable laws governing patient privacy. They must also respect the relationship patients have with referring physicians and how those physicians are themselves allowing patients access to the health records they maintain in their medical practices.

Sharing PHRs to Improve Quality and Efficiency, Decrease Cost

A recent Reuter’s story reported that patients want easy access to their patient health record (PHR). Patients also want to be able to share their health information. Proponents of open-access medical records believe that patient access to PHRs will help boost the quality of care, the article said.

”We believe there is abundant evidence that having patients actively participate in their care will improve their care,” stated Kenneth Shine, M.D., Executive Vice Chancellor for Health Affairs at the University of Texas System, who co-wrote an Annals of Internal Medicine editorial that accompanied the studies. Shine also pointed out that sharing health information can improve efficiency and decrease redundancy and cost.

In the first study, a research collaboration called OpenNotes conducted a survey of more than 37,000 patients from more than 170 primary care physicians (PCP).

The objective was to explore attitudes toward potential advantages or problems of offering patients ready access to physicians’ notes.

Data from two studies here in the United States affirms that patients want access to their health records.

Data from two studies here in the United States affirms that patients want access to their health records.

The three sites involved in the study are nationally known and respected. Participating were Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Seattle.

Access to Physicians’ Notes Is New Territory for Patients

Patient access to medical records is not new. What is news is patients now also want access to doctors’ notes. ”Patients have not always had an easy time getting their medical records,” observed Tom Delbanco, M.D., Richard and Florence Koplow-James Tullis Professor of General Medicine and Primary Care, Harvard Medical School, in the Reuters Health story. “Especially the notes that doctors take during a visit.”

Delbanco was  one of the study’s senior authors. He is also Founding Chief of the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center in Boston, Massachusetts.

The study found that patients were overwhelmingly enthusiastic about OpenNotes, regardless of whether they decided to join the program or not. When queried during the study, more than 90% responded favorably, Reuter’s reported.

It won’t surprise pathologists and clinical laboratory managers to learn that not all physicians shared patients’ enthusiasm for having ready access to the notes physicians enter into a patient’s health record. At least 80% of physicians participating in the survey expressed concerns.

The majority of physicians felt patient access would lead them to censor their notes about mental health and substance abuse. The AIM editorial also mentioned concerns about potential increases in workloads and unnecessary anxiety for patients.

Early-Adopters Find Advantages in Open-access Policy

In the second study, researchers surveyed over 18,000 Veterans Affairs patients who use the agency’s online system, My HealtheVet. These patients were asked about sharing their PHRs with caregivers and other involved providers. The system allows patients to view information such as medication lists.

Study researchers determined that 80% of the patients surveyed expressed interest in designating someone to have access to their PHRs. This was most frequently a spouse.

“Our studies suggest that health systems need to be developing these record systems,” noted Donna Zulman, M.D., Instructor, General Medical Disciplines, Stanford University, and lead author on the VA study.

Readers of The Dark Report (TDR) will recall a recent TDR story about the Kaiser Permanente experience with open-access issues. (See The Dark Report, “At Kaiser Permanente, Real-Time Lab Results Are a Hit with Patients”.)

It was 2005 when Kaiser Permanente gave members real-time access to almost all medical laboratory test results in their PHR. Kaiser’s policy conforms to different state laws.

For example, “California state law mandates that certain lab results must be blocked from the patient,” stated Kate Christensen, M.D., Medical Director of the Internet Services Group at Kaiser, in that exclusive interview with The Dark Report. In other cases, the physician needs to have a conversation with the patient about the results. Instead of being automatically released, those results can be accessed [by the patient] after the discussion.

Christensen added that helping to avoid problems relating to physicians’ failure to inform patients about test results is one advantage of Kaiser’s open-access policy for patients. Since implementation of this policy, the number of patient phone calls to physicians has been manageable.

Another example of early-adopters of shared medical records is the University of Texas M. D. Anderson Cancer Center (UTMDACC). According to the AIM editorial, in May 2009, UTMDACC went live with a shared records program for patients and their referring physicians. At the time of the editorial, more than 40,000 individuals had viewed their records over 605,000 times, the authors wrote.

Further, about 1,300 referring physicians accessed the records of the patients they referred to UTMDACC over 28,000 times. At present, 84% of active patients have obtained access to their PHRs.

These studies demonstrate that consumer demand for practical health-management tools is robust and growing. Clinical laboratory managers and pathologists may want to update their business strategies and identify ways that their lab organizations support patients gaining access to their own laboratory test data.

—Pamela Scherer McLeod

 

Related Information:

Patients want to read, share their medical records

Access to the Medical Record for Patients and Involved Providers: Transparency Through Electronic Tools

The Dark Report: “At Kaiser Permanente, Real-Time Lab Results Are a Hit with Patients”

Inviting patients to read their doctors’ notes: patients and doctors look ahead: patient and physician surveys

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