– Patients want enhanced data sharing for providers and patients, but they also stressed the importance of patient data privacy and security, according to a Pew Charitable Trust focus group.
Focus group respondents, who had an array of health issues, said patients should receive all information from providers. Respondents also agreed providers should be able to exchange all patient information between themselves. This would also include data about substance use history, behavioral or mental health, and social factors. However, some participants did raise privacy and security concerns.
The focus groups concentrated on the new regulations from the Office of the National Coordinator of Health IT (ONC) that would boost health information exchange, give patients more access to their health data, specifically on their cellphones, and eradicate information blocking.
“Delivering interoperability actually gives patients the ability to manage their healthcare the same way they manage their finances, travel and every other component of their lives,” Don Rucker, MD, national coordinator for health information technology said at the time of the ONC final rule. “This requires using modern computing standards and APIs that give patients access to their health information and give them the ability to use the tools they want to shop for and coordinate their own care on their smartphones.”
“A core part of the rule is patients’ control of their electronic health information which will drive a growing patient-facing healthcare IT economy, and allow apps to provide patient-specific price and product transparency,” Rucker continued.
With many people getting healthcare treatment from a number of providers, health information can be tough to access due to a lack of interoperability.
With the introduction of the ONC interoperability rule, it forced new criteria for EHRs to make all patient data available through application programming interfaces (APIs), which will allow providers and patients to have access to health information.
“The use of these standards-based APIs would let technology developers access individual pieces of information—such as a list of medications—instead of a broader document containing more data, some of which might be unnecessary or individual patients may not wish to share,” Pew wrote.
The focus groups, which consisted of 80 individuals from New Jersey, Missouri, Washington, Tennessee, and patients with serious illnesses that were consulted online, were asked about interoperability, patient access to data, social determinants of health (SDOH) data exchange, and privacy concerns.
While the majority of respondents said they would like full access to their medical records, those with serious illnesses and frequent healthcare users were more likely to want full access.
“I couldn’t even name you all the different portals and things that I probably have,” said an anonymous Medicare beneficiary from Morristown, NJ. “One of them I know is being canceled in November, but I couldn’t even tell you really. So you get what you can and then … you call the doctor’s office and they can mail it to you.”
Although most wanted full access of their health records, some did not want to obtain their demographic or SDOH data. Respondents said they had concerns that this data could cause negative care from the clinician and that these specific data sets were unnecessary for medical treatment.
“If the doctor needs to know, I can tell him,” said an anonymous respondent from Nashville, TN. “I don’t want to have it transferred on a profile for him that I am hungry or that I don’t have a place to live at. I can tell him that if I need him to know that.”
While respondents preferred the exchange and access of their health information, the majority did bring up privacy and security concerns.
They noted that because the APIs would be regulated by the government, they worried that their data would not be 100 percent secure and protected by HIPAA. They also expressed concern that hospital workers could access private social information and that their smartphone data could be sold to private companies.
In an effort to ease the minds of patients, government agencies need to be transparent with how they will protect patient privacy.
“Increased use of APIs—particularly those based on common standards—can help meet patients’ goals on the use of their data,” wrote the authors. “Clinicians could gain access to more information on patients’ medical conditions from other providers to better coordinate care, while sharing only data necessary for treatment.”
“Patients could also more easily obtain and aggregate their data, enabling them to successfully engage in their care,” Pew concluded. “When implemented effectively, APIs can support patients’ preferences for data access and privacy so that individuals and clinicians have the information they need to support higher-quality, more coordinated care.”