Healthcare organizations shouldn’t spend all their time developing sophisticated health information exchange networks that connect clinicians without sparing a thought for how patients will be able to access the wealth of electronic data flowing across the care continuum, declares an editorial in the New England Journal of Medicine this week.
Patient data access must take on a new sense of urgency for the healthcare industry as it continues to slog through the mire of creating widespread EHR interoperability – especially if providers and rule makers are going to tout patient engagement as a critical part of reform activities.
Patients are already seeking outside sources of information and support related to their diagnoses and treatments, argue Kenneth D. Mandi, MD, MPH and Isaac S. Kohane, MD, PhD, from Boston Children’s Hospital and Harvard Medical School. Shouldn’t the healthcare industry help them understand their care instead of hinder their ability to become informed, engaged, proactive partners?
The industry has something of a chequered past when it comes to providing patients with secure, intuitive, and complete access to their own information.
“Industry giants have scars to show for their attempts” to bring personal health records to patients on a broad scale, Mandi and Kohane write.
Consumer-grade personal health records (PHRs) like Microsoft HealthVault and Google Health failed to attract much interest or attention in the early days of the industry’s conversion to electronic data, and provider-run patient portals have hardly done much better for many organizations, despite being a requirement for succeeding in Stage 2 meaningful use.
Stakeholders on both sides of the equation continually express frustration with the toolsets available to them. On one hand, survey after survey proclaims that consumers are ready and willing to participate in their own care by accessing their data online.
On the other, providers complain that their patients rarely follow through. Patient engagement levels have been so abysmally low that CMS actually scrapped what it thought of as a relatively conservative five percent benchmark due to the fact that most providers couldn’t meet the criteria.
“Competitive intelligence might be released about, for example, high-value markets or hospital-acquired infections. Some organizations fear security breaches or leakage of patients from their provider network. Transferring data to another product may jeopardize the EHR vendor’s business model, as vendors may have trouble retaining customers if exclusivity is broken.”
Efforts to address information blocking have largely focused on activates that prevent provider-to-provider health information exchange, attracting major attention from Congress and the ONC in 2015. But the industry may have been better served if lawmakers and regulators had addressed the issue of EHR interoperability and patient data access much, much sooner, the article argues.
“Since 1996, the Health Insurance Portability and Accountability Act (HIPAA) has required health care organizations to provide patients with access to any data that are ‘readily producible,’ in the format the patient requests,” say Mandi and Kohane, but organizations don’t always follow HIPAA’s guidelines to the letter.
In fact, they may be flaunting the law by charging exorbitant fees for copying and releasing patient records, and stakeholders simply don’t understand that the legislation is meant to protect patient privacy, not completely prevent the movement of data from the provider to its rightful owner: the patient.
The EHR Incentive Programs have also fallen far short on the patient engagement front, the authors add. “Under the Meaningful Use program, the intended lingua franca for data liquidity was the Consolidated Clinical Document Architecture, but it was never sufficiently standardized to support robust document exchange.”
“We believe the meaningful use program would have been more successful if it had rewarded clinicians for storing data in patient-controlled repositories rather than in EHRs that fragment data across the health care system.”
The patient engagement landscape may be in for a swift and welcome renewal, however, as EHR adoption reaches its saturation point and consumers gain almost ubiquitous access to smartphones, tablets, home internet service, and even wearable Internet of Things devices.
Patient expectations are changing as they become more firmly entrenched in a connected society, and the healthcare industry’s concurrent experimentation with accountable care and value-based reimbursement strategies may just be the catalyst required to build a stronger business case for patient engagement.
Shifting control of patient data to the patients themselves can produce several important benefits for the healthcare ecosystem, the authors say.
Meaningful and robust patient engagement “allows a patient to effectively become a health information exchange of one: as data accumulate in a patient-controlled repository, a complete picture of the patient emerges. If patients can obtain their data wherever they go, they can share them with physicians as needed — rather than vice versa,” Mandi and Kohane explain.
Providers are still a long way from crafting a seamless, interoperable, easily accessible patient data landscape, but the authors suggest that the industry should take four foundational steps towards creating a “patient-driven information economy.”
Firstly, public and private insurers must offer stronger incentives for healthcare providers to engage with their patients using “standardized electronic mechanism[s]” that can eventually deliver automated services and updates.
Federal policy makers can also use programs like meaningful use to strongly encourage the adoption of standard public application programming interface (API) technologies that allow developers to create harmonious ecosystems of patient engagement apps.
APIs can help innovators take advantage of everything from consumer-grade Internet of Things devices to top-shelf electronic health record systems – but providers must foster the demand for these tools by voting with their wallets for best-of-breed, standards-based vendor offerings.
Researchers and regulators can also “vet a set of online reference tools that define, by demonstration as well as specification, how consent can be delivered for global or narrowly defined transfer of patient data to and from patient-controlled data repositories,” the article states. “Essential functionality will include roles for guardians and proxies as well as easy ways to change the scope of, or revoke, consent.”
Finally, the healthcare industry can work to adopt a “rigorous authentication framework” for patient identification.
Whether this method draws on back-drawer plans for a national patient identifier or simply adopts authentication procedures already in use in other sectors of the e-commerce industry, healthcare organizations must be able to have a trusted and interoperable way to ensure patient privacy and security are not compromised when data is shared.
By integrating the patient more firmly into the health information exchange ecosystem, providers may be able to leverage the consumer as a force to be reckoned with when it comes to their own care.
“The requisite technology is no longer mysterious or expensive,” the Mandi and Kohane conclude. “It’s a set of commodity-level toolkits for data exposure, transfer, and storage. Successful translation of these technologies into a productive health information economy awaits only cooperation from data producers and purveyors.”