GAO: HHS Should Tighten Up Its Patient Data Access Efforts

Posted on March 23, 2017 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

The Government Accountability Office has issued a new report arguing, essentially, that while its heart is in the right place, HHS isn’t doing enough to track the effectiveness of patient health data access efforts. The report names ONC as arguably the weakest link here, and calls on the HHS-based organization to track its outreach programs more efficiently.

As readers know, CMS has spent a vast sum of money (over $35 billion at this point) to support health IT adoption and health data access. And while these efforts have spilled over to some patients, it’s still an uphill battle getting the others to access their electronic health information, the GAO report says.

Moreover, even patients that are accessing data face some significant challenges, including the inability to aggregate their longitudinal health information from multiple sources into a single, accessible record, the agency notes. (In other words, patients crave interoperability and data integration too!)

Unfortunately, progress on this front continues to be slow. For example, after evaluating data from the 2015 Medicare EHR Program, GAO researchers found that few patients were taking a look at data made available by their participating provider. In fact, while 88 percent of the program’s hospitals gave patients access to data, only 15 percent of patients actually accessed the information which was available.  When professionals provided patients with data access, the number of patients accessing such data climbed to 30 percent, but that’s not as big a delta as it might seem, given that 87 percent of such providers offered patient data access.

Patient reluctance to dive in to their EHI may be in part due to the large number of differing portals offered by individual providers. With virtually every doctor and hospital offering their own portal version, all but the most sophisticated patients get overwhelemed. In addition to staying on top of the information stored in each portal, patients typically need to manage separate logins and passwords for each one, which can be awkward and time-consuming.

Also, the extent of data hospitals and providers offer varies widely, which may lead to patient confusion. The Medicare EHR Program requires that participants make certain information available – such as lab test results and current medications – but less than half of participating hospitals (46 percent) and just 54 percent of healthcare professionals routinely offered access to clinician notes.

The process for sharing out patient data is quite variable as well. For example, two hospitals interviewed by the GAO had a committee decide which data patients could access. Meanwhile, one EHR vendor who spoke with the agency said it makes almost all information available to patients routinely via its patient portal. Other providers take the middle road. In other words, patients have little chance to adopt a health data consumption routine.

Technical access problems and portal proliferation pose significant enough obstacles, but that’s not the worst part of the story. According to the GAO, the real problem here is that ONC – the point “man” on measuring the effectiveness of patient data access efforts – hasn’t been as clear as it could be.

The bottom line, for GAO, is that it’s time to figure out what enticements encourage patients to access their data and which don’t. Because the ONC hasn’t developed measures of effectiveness for such patient outreach efforts, parent agency HHS doesn’t have the information needed to tell whether outreach efforts are working, the watchdog agency said.

If ONC does improve its methods for measuring patient health data access, the benefits could extend beyond agency walls. After all, it wouldn’t hurt for doctors and hospitals to boost patient engagement, and getting patients hooked on their own data is step #1 in fostering engagement. So let’s hope the ONC cleans up its act!