Lack of management of patient-generated info a 'large-scale problem'

An electronic health record may have gaps in patient generated health information (PGHI) due to both a lack of standardization of the questions asked of patients and a lack of centralized governance of the information obtained, according to a new study published in BMC Medical Informatics and Decision Making.

PGHI is a large part of patient engagement and the Meaningful Use program. The study focused on the Mayo Clinic and found 269 different "governed"--i.e. official--patient question sets, with about 19,841 patient questions for the urology and orthopedic departments.   

Researchers determined there to be substantial variability in the questions asked of patients. For instance, in a random sample of 70 of the 269 patient question sets, the researchers found at least 650 unique questions related to tobacco use, with 389 on behavior/treatment alone. The questions varied by wording, type (free text, yes/no, multiple choice), answer groupings and terminology.

As a related problem, of 294 questions asked of a menopausal patient obtaining treatment, 218 were repeated.

The authors also determined that there was little visibility in what was being collected; that the data was not stored in a way that could be easily reused or shared; and that some pertinent questions possibly were not asked.

Moreover, without organizational oversight, standardization and shared data models, the data can't be leveraged for better clinical care or research. They authors recommended that patient questions needed central storage and mapping of data, codification of data to support interoperability and a centralized governance structure to develop and maintain question sets.    

"Despite efforts to migrate to electronic medical records, gaps remain in the development and management of patient question sets," they said. "This study shows major interoperability challenges of PGHI within a single EMR. As we look forward to increased interoperability, we will need to systematize PGHI collection across EMRs as well."

To learn more:
- read the study