Providers Increasingly Sharing More Health Data With Patients

Providers slowly are increasing their sharing of medical data with patients, partially in response to the shift from fee-for-service payment models to alternative payment systems, the New York Times reports.

According to Ben Shneiderman, a University of Maryland professor and health IT expert, many providers long have sought to withhold data out of a desire to keep their patients. Further, health IT vendors in the past have sold health IT systems that are closed and proprietary. Shneiderman said some organizations have "business models [that] do not favor sharing information, either with other hospitals or patients."

However, the shift toward accountable care models -- in which providers are paid to care for a certain patient population -- has created financial incentives to increase data sharing.

Beth Israel Deaconess Chief Information Officer John Halamka said, "In the fee-for-service world, the incentives for data-sharing were not there. But with accountable care, providers cannot survive unless they share data" to limit unnecessary tests and improve care.

Some advanced medical centers are beginning to share more data with patients, the Times reports. For example, Partners HealthCare Group now provides more than 500,000 patients with access to some of their data via the Internet.

According to the Times, other examples of data sharing initiatives include:

• The OpenNotes program, through which nearly five million patients have been provided with online access to notes doctors have taken about them; and
• The Argonaut Project, which is designed to advance the adoption of technical standards to improve the electronic exchange of patient data among providers. The Advisory Board Company, which publishes California Healthline, is a founding member of the project.

Potential Benefits of Increased Data Sharing

Medical experts have said that providing patients with more access to their medical data could help them to:

• Make healthier choices;
• Adhere more to prescription drug regimens; and
• Detect early warning signs of diseases.

A year-long study of the OpenNotes project at health organizations in three states found that more than two-thirds of patients using the initiative said they had:

• Adopted healthier habits;
• Improved understanding of their medical conditions; and
• Increased their medication adherence.

In addition, about 20% of the physicians in the study said that the initiative led them to alter how they wrote notes about particular conditions, such as obesity and substance use disorders.

Further, a study by patient network PatientsLikeMe found that among members of the network's epilepsy community:

• 55% said that sharing experiences and information with others in the network helped them learn more about seizures; and
• 27% responded that sharing experiences and information helped increase medication adherence.

Potential Downsides of Increased Data Sharing

According to the Times, increasing data sharing has also raised several concerns among stakeholders, including:

• Patients increasingly asking physicians time-consuming questions;
• Increased legal risks; and
• Potential privacy issues.

However, the OpenNotes study found that just 3% of physicians said they had spent more time responding to patient questions that came up outside of visits after starting the initiative (Lohr, New York Times, 3/31).