Are all patients up to the task of managing their own health data? Some CIOs say no

There are ongoing initiatives to enable patients to have access to their health data through mobile apps. (Pinkypills/Getty Images)

With the Centers for Medicare and Medicaid Services introducing policies to drive interoperability and CMS Administrator Seema Verma recently making it clear that “patient data belongs to patients,” there is increasing discussion about giving patients easier access to their health data.

But will all patients truly be up to the task of managing their own health data?

Some CIOs say definitely not, especially those patients who are chronically ill or those without internet access, for example, according to a recent CIO focus group.

The College of Healthcare Information Management Executives (CHIME) and LexisNexis Risk Solutions led the focus group, which included vice presidents and CIOs from hospitals, nursing homes and health plans, to gauge healthcare leaders’ top priorities in 2019.

The focus group underscored that CIOs and other healthcare executives have pragmatic questions as it relates to patient-owned medical records.

Discussion touched on making medical records available in a universal electronic format where patients, not providers, decide who accesses their data.

“We do think this is the future. We’re watching what’s happening,” one healthcare CIO said, according to a report summarizing the CIO focus group discussion.

It was part of a broader discussion of practical considerations among the CIOs in the focus group: How can providers be confident they get access to a complete and accurate record to ensure they make accurate medical decisions? Can organizations trust the information, and might it put providers at risk for medical errors?

Also, what if a patient decides not to share certain records? And, how will consumers who do not widely use technology, are chronically ill or lack access to the internet be able to manage their records?

RELATED: HIMSS19: Loud and clear message from feds on patient data: It belongs to patients

The focus group discussion also underscored that top priorities for hospital CIOs in 2019 seem to differ largely based on the current phase of electronic health record deployment, with more mature organizations moving past infrastructure needs and focusing on technology to engage patients.

CIOs at healthcare organizations in the early phase of EHR adoption and upgrades are focused primarily on infrastructure issues, such as cybersecurity and interoperability. Organizations in a mature phase of EHR deployment have a different set of priorities, as CIOs are focused on data analytics and using technology to engage patients, according to the report.

Here’s what else CIOs had to say about their top priorities in 2019:

  • On cybersecurity: Protecting patients’ data ties into earning and retaining patient trust. “You lose the patient’s confidence in your ability to deliver healthcare,” said one CIO participating in the focus group. “Patients will go somewhere else because they don’t trust that you can take care of their data.” Hospital and health plan CIOs say they are using multiple layers of security, including one-time passwords, biometrics and knowledge-based authentication, to address vulnerabilities in the system infrastructure.
  • On interoperability: It’s an ongoing challenge as organizations look for ways to exchange data within healthcare systems and externally with other data partners. However, interoperability isn’t only about data exchange, and CIOs say they are focused on data consumption and using data in a meaningful way, specifically the need to deliver information into the clinical workflow of providers.
  • On data governance and data quality: CIOs continue to face significant challenges in terms of ensuring records are current, complete and accurate, such as mismatched patients and duplicate records. Managing patient directories is highly complex, especially during mergers and acquisitions. Most CIOs in the focus group support the creation of a national patient identifier but aren’t hopeful that it will actually happen. Still, they agreed that some type of universal patient identifier would support true interoperability.
  • On data analytics: CIOs said the ability to data mine and partner with clinical operations is an essential part of surviving and thriving in an era of value-based payments. Analytics allow organizations to risk stratify patients, analyze payer mix and more. However, data quality continues to be a barrier even for organizations that are further along with EHR optimization efforts. “As we’re on this data analytics journey, we find that the data integrity is one of the biggest limiting factors and challenges in getting good, accurate insights,” one CIO in the focus group said.
  • On patient engagement: In addition to offering virtual care and telemedicine options, CIOs are trying to personalize the healthcare experience. They want to give patients the ability to communicate with providers via email, telephone, mobile app, text and web interface. They also want to enhance the user experience by providing interactive content via the portal and mobile apps.