Even as consumer-facing data explodes in quantity and availability, a team of healthcare policy researchers is warning provider leaders that they need to spearhead a movement to change the culture around the use of such data, by integrating consumer-generated data into clinical care, embracing transparency around quality of care, and curating the tools that consumers can use to follow through on health-focused recommendations.
In the March issue of Health Affairs, Karandeep Singh, M.D., MMSC, Sean R. Meyer, and John M. Westfall, M.D., M.P.H., write, in “Consumer-Facing Data, Information, And Tools: Self-Management Of Health In The Digital Age,” 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.”
But, after analyzing the current landscape around consumer-facing data, the authors warn that there is a lot that needs to be fixed with regard to how consumer-facing data is used and managed. “The doctor-patient relationship historically has been heavily imbalanced, with doctors being the sole party with direct access to patients’ health and medical information about diagnoses and treatments. The maturation of electronic health records (EHRs), patient portals, and websites targeting health care consumers has led to a rapid expansion in the number and types of resources that consumers can use in making decisions about their health.”
The authors describe, 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. 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. 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).”
The challenge in this emerging landscape—which includes both consumer-facing apps and consumer-facing health websites—is that, as the authors put it, “[T]hese resources have limitations with important societal implications. Patient portals have lowered the barrier for consumers to access their health data, but the portals’ use is not clearly linked to impacts on health outcomes, costs, and use of health services,” they note. Meanwhile, “Managing consumer-generated data in patient portals is another potential problem.” And, “The role of search engines as initial and sometimes final sources of health information 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.” Meanwhile, “ While public quality reporting is well intentioned, the caveats associated with each of the quality-reporting tools might not be sufficiently communicated to consumers.”
Meanwhile, the researchers note, “Providers’ attempts to identify high-quality health tools for patients have been a challenge.” As a result, they state, “Addressing the limitations and risks in consumer-facing digital resources should be a priority. The Federal Trade Commission (FTC) regulates deceptive claims, while the FDA regulates apps that function like medical devices. Much else can be done to improve the usefulness and safety of digital resources for consumers,” they assert. “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, “As patients increasingly exercise their autonomy in medical decision making as a result of more readily available resources… a culture shift will be required—particularly among health professionals—before consumers and patients fully realize the benefits. This culture shift will need to occur in several different areas, including 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.”
