Study: Health Researchers Find Major Gaps in How Consumer-Facing Data Is Being Used

March 25, 2019
In the March issue of Health Affairs, a team of researchers finds major gaps between the ideal of consumer-facing health data availability, and its actual use, and urge providers to step in to help consumers

The shift towards connecting healthcare consumers and patients with consumer-facing data is not only an idea that is broadly supported; it is also one that is being promoted by senior officials at the Department of Health and Human Services (HHS), the Centers for Medicare and Medicaid Services, and the Office of the National Coordinator for Health IT (ONC). Yet, as a team of healthcare researchers has found, there remain numerous issues with and limitations around, consumer-facing data.

In an article published in the March issue of Health Affairs, Karandeep Singh, Sean R. Meyer, and John M. Westfall, have examined some of the challenges. In “Consumer-Facing Data, Information, And Tools: Self-Management Of Health In The Digital Age,” they write that “Consumers have greater access to data, information, and tools to support the management of their health than ever before. While the sheer quantity of these resources has increased exponentially over the past decade, the accuracy of consumer-facing resources is variable, and the value to the individual consumer remains uncertain. In general, the quality of these resources has improved, mostly because of improvements in web and mobile technologies and efforts to restructure health care delivery to be more patient centered. We describe the major initiatives that have led to consumers’ increased access to both their own health data and performance data for health care providers and hospitals.” Still, there are issues.

“The adoption of EHRs [electronic health records] and accompanying patient portals has greatly increased consumers’ access to their own health data,” the authors write. “The adoption of EHRs was largely driven by financial incentives put in place by the Health Information Technology for Economic and Clinical Health (HITECH) Act, part of the American Recovery and Reinvestment Act of 2009. The incentives were designed to drive health care professionals to adopt ‘certified’ EHRs designed to meaningfully improve patient care, although the set of functions required for certification was not defined at the outset. Discussions organized by the Consumer Engagement Workgroup of the Markle Foundation, a nonprofit organization focused on health care quality improvement and adoption of emerging technologies, led to the idea of making patient records downloadable at the click of a button. This idea came to be known as the Blue Button initiative,” which has been successful in initiating a shift on the part of those patients connected to it.

Further, they note, “Through adoption by EHR vendors, over thirty-three million patients now have access to their doctors’ notes. Organizers of the OpenNotes demonstration say that doctors should allow patients to provide feedback on the notes to further reinforce the collaborative relationship between doctors and patients.”

What’s more, “The largest area of growth in digital health in the past five years,” the researchers write, “is the development of interactive apps and websites that enable consumers to directly participate in self-management. A Pew Research Center survey conducted in 2012 revealed that 69 percent of US adults keep track of at least one health indicator (such as weight, diet, exercise routine, and symptom), and 21 percent of those who track indicators do so using some form of technology. The number of health-related mobile apps is steadily rising and now exceeds 318,000. Smartphone apps are uniquely positioned to affect consumers’ management of their health because they are often within physical reach; are constantly connected to the internet; and can provide real-time notifications to the consumer, thus enabling a real-time feedback loop. These apps are more accessible than ever, as over three-quarters of Americans own smartphones, and smartphone ownership is rising among older adults,” they add. And, patients are increasingly generating their own data through apps.

Still, the authors note, “In the face of remarkable growth in the digital data, information, and tools available to consumers, these resources have limitations with important societal implications.” They cite several key issues right now, including:

>   Patient portal use among patients with diabetes, heart failure, hypertension or depression, and those who have used preventive services, have not shown health status benefits, unless paired with thorough case management.

>   Patient-generated data in patient portals remains highly problematic, in terms of the validation of such data, and its use inside the EHR, especially with relation to clinician workflow.

>  Coming from the other side, the issue remains as to how to provide consumers with EHR data delivered to their smartphones; in that regard, the authors note that, “Instead of waiting for health systems to figure out how to integrate consumer-derived data into the EHR, Apple is bringing the EHR data directly to consumers: In March 2018 Apple announced that thirty-nine hospitals would be integrating their EHRs directly into consumers’ iOS devices.”

>   Reliability of the consumer health information provided on the Web and accessed via the use of search engines, “is another area of concern. Searches have the potential to harm consumers if search results are inaccurate or misleading, and the term cyberchondria has been used to describe an inappropriate escalation in patients’ health concerns resulting from a web search.”

>   “Issues of transparency also extend to proprietary algorithms and decision tools that drive decisions about health care and insurance,” the authors note, citing the example of algorithms used to determine consumers’ health insurance rates.

>   “Providers’ attempts to identify high-quality health tools for patients have been a challenge. Prior efforts to curate digital tools have largely failed to increase physicians’ adoption of high-quality tools in their practices.”

The authors recommend:

>   That health systems should integrate consumer-generated data into their EHRs, giving priority to data elements most likely to benefit patients’ health. Health systems should transparently report quality measures directly to consumers to alleviate concerns about inaccurate data being used by public reporting websites.

>   The Federal Trade Commission take a more active role in the enforcement of its existing authority through the FTC Act, pertaining to misleading claims made by app developers. Guideline-making bodies should include examples of apps or tools to engage consumers in the implementation of recommendations related to the tracking of health information.

The leaders of patient care organizations support patients’ digital journeys through “the integration of consumer-generated data into clinical care, embracing transparency around quality of care, and health care providers’ curation of tools that consumers can use to follow through on health-focused recommendation        

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