Additional EHR Data Privacy Key to Compel Consumer Data Sharing

Patients are no more likely to share their medical and EHR data than they are personal data from other parts of their lives, according to a new study published in JAMA Network Open, suggesting that additional EHR data privacy protections could compel more patient data sharing.

These findings come as healthcare works on projects like precision medicine, which leverages patient data and real world data to improve treatments and therapies. Without consumer enthusiasm for sharing their health data, these programs would not get off the ground.

But this latest data showed that patients aren’t any more likely to share that health data, which could serve for the common good, than they are any other type of information in their daily lives.

The research is based on a national survey of 3,543 adults. More than half of respondent (55 percent) preferences to share or not share their information were largely independent of context: 10 percent were universally opposed to all data sharing; 33 percent were opposed to most data sharing; and 13 percent were in favor of most data sharing.

The survey also revealed that white and higher-income populations were more likely to have data privacy concerns compared to individuals from racial and ethnic minority populations or those from lower-income households.

While many survey respondents held strong opinions about whether they wished to share or not share their personal data, the survey results found that the specific context related to information reuse is still an important factor in data sharing viewpoints.  

In comparison with EHR data, consumers were less willing to share information about their finances from financial institutions, places they visit from public cameras, communication with other people on social media, and their internet search history.

Participants were more willing to share information about their walking activity from applications on their phone in comparison with information from their EHR.

There were no differences in consumer willingness to share genetic information from consumer genetic testing companies, retail purchase history from online retail stores (past purchases), or information about places they visit from their mobile phone compared with their personal EHR data.

“With the lines between health and nonhealth information blurred more than ever, the traditional boundaries around different types of information may no longer be relevant,” the researchers suggested.

The study authors noted that the proliferation of digital health data from a wide range of sources could aid in the development of programs and tools to improve health.

Stakeholders should examine whether enhanced data privacy protections would increase trust and support for socially beneficial uses of EHR data, such as precision medicine, the researchers suggested.

“Prior research suggests that when protections are perceived to be stronger (ie, consumers have greater control), consumers have fewer privacy concerns,” they wrote. “The current lack of protections may hinder consumer support for health programs powered by consumer digital data and data science.”

The study authors pointed out several limitations to the research. First, because of the cross-sectional design, the study findings represent a moment in time (July 2020).

Additionally, the findings represent the results of rating hypothetical scenarios rather than actual decisions, they noted. However, the researchers emphasized that conjoint analysis is a rigorous and validated approach to measure preferences and predict real-world decisions.

The study authors also acknowledged that as with all survey research, nonresponse bias is a concern.

“However, the experimental design allows for strong internal validity from the conjoint experiment,” they explained. “In addition, the sample is drawn from a nationally representative panel population, and the participation rate among sampled individuals was high and similar to other published studies.”