Who Will Manage All of That Consumer-Facing Data?

March 18, 2019
As a team of healthcare policy researchers notes in the March issue of Health Affairs, consumer-connected data is proliferating—and no one has a plan as to what to do with it all

Who will actually manage all the consumer-facing data flooding into healthcare right now? That is a question with many dimensions, as noted by healthcare researchers in the March issue of Health Affairs. In the article “Consumer-Facing Data, Information, And Tools: Self-Management Of Health In The Digital Age,” Karandeep Singh, M.D., MMSC, Sean R. Meyer, and John M. Westfall, M.D., M.P.H., 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.”

There are many reasons that patient-facing data is flooding into the healthcare delivery system in such a completely non-organized way. In their article, Singh, Meyer, and Westfall reference, among other elements, the adoption of electronic health records (EHRs), and the initiation of the Blue Button initiative by the federal government, as well as the emergence of the OpenNotes movement, and the impact of all those phenomena on consumerism and data in healthcare, as elements contributing to the current landscape around consumer-facing data. They also discuss the growing self-generation of health data by patients, through pedometry and other smartphone-facilitated phenomena. Meanwhile, they note, “The largest area of growth in digital health in the past five years 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.30 The number of health-related mobile apps is steadily rising and now exceeds 318,000.”

Further, the researchers add, “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 (46 percent among people ages sixty-five and older) and people with low household incomes (67 percent among households earning less than $30,000 per year).”

Meanwhile, as the article’s authors note, technology is marching forward and far outstripping any attempts by healthcare leaders to begin to truly harness it. “Patients are increasingly generating their own health data as well, ranging from step counts to electrocardiograms,” they point out. “Pedometry has long been available through specialized devices, but its introduction into iOS and Android smartphones in 2013 has turned most modern smartphones into relatively accurate pedometers.12 In 2014 Apple’s HealthKit enabled apps to store, access, and exchange tracked health data directly on the iOS operating system. This is particularly beneficial for consumers using digital health-oriented devices such as weight scales and glucometers. These devices typically share their data wirelessly with companion smartphone apps using Bluetooth, and easing information exchange between apps makes it possible for one app to provide medical advice based on a measurement taken by a different app.”

What’s more, as more advanced medical capabilities are incorporated into consumer-friendly devices, the landscape will alter still further. “In 2012 AliveCor released a smartphone case—approved by the Food and Drug Administration (FDA)—with the capability of measuring a single-lead electrocardiogram for the identification of cardiac arrhythmias,” they note. And, “In November 2017 this functionality was extended to smartwatches when KardiaBand became the first FDA-approved medical device accessory for Apple’s smartwatch for the detection of atrial fibrillation. In less than a year Apple integrated this functionality directly into its smartwatches alongside other health-oriented functionality enabling the detection of falls. Thus, smartwatches appear poised to give consumers access to health data that previously required specialized medical devices.”

There are numerous other aspects of the authors’ analytical article; but they all point to one thing: the leaders of the healthcare delivery system appear to be almost entirely unprepared for the absolute Great Flood of consumer-facing and consumer-connected data about to wash over and into our delivery system in the next few years. Now, to be clear, this is not the fault of patient care organization leaders; it’s not really anyone’s fault at all. None of this data had ever been a part of the patient care delivery system until now, and no one has been paying providers to do anything with it.

Still, as we begin to move forward to take on more and more financial risk for the health of defined populations, and start down the incredibly long, twisted path towards effectively incorporating social determinants of health (SDOH) data into longitudinal patient records and care management and population health databases and processes, why shouldn’t we include at least some consumer-facing, patient-generated data? The clear theoretical answer is “yes.”

But of course, the practical challenges feel almost insurmountable right now. Healthcare IT leaders are challenged by the most immediate tasks facing them; and this area seems like an entire new galaxy to have to explore (and somehow conquer). Further, as the authors note, “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.”

Ultimately, the researchers conclude 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,” and need to shift the entire culture of healthcare in several different areas, including [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 recommendations.”

I agree. I also see this is an extremely long and complex path forward, with many possible roadblocks and detours. The good news? In the next few years, greater clarity will emerge as to which types of data might be most sought after among the leaders of patient care organizations, and of health insurers. And then the race will be on to figure out how to lasso and exploit the types of data that provider and payer leaders will make sense to use. It will be a long journey forward, but in the end, this really is a very fertile area for all concerned, and for our society. In any case, healthcare IT leaders will be nexus people in moving the needle forward in this area, as in so many others.

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