Access. Stewardship. Privacy. Interoperability.
All important concepts for those who manage healthcare data – and for patients too.
Some believe that patients aren’t able to discern how and when to share their data. Data is then withheld, often with the best intentions, maybe because of interoperability issues, stewardship and privacy issues, or because of confusion about data sharing.
I have heard strong opinions declaring a patient's inability to make informed decisions around the use of their data. However, that same position often, and abruptly, reverses when they or a family member is sick. When healthcare is personal, access to information, coordination and communication become vital.
Each of us makes decisions every day: some we are fluent in and others we need to learn from, but all are our own to make.
Principles for Interoperability: Ingrained and New
Watch Adam Boehler, Centers for Medicare & Medicaid deputy administrator and director of the Innovation Center, talk with HIMSSTV about talks new rules, interoperability and freeing data.
The doctrine of informed consent is based on three principles already ingrained in healthcare culture and practice: duty of care, breach of the duty and respect for persons.
Respect for persons embodies the concept that all people deserve the right to fully exercise their autonomy. Respect for persons requires a system of interaction in which one entity ensures that another has agency to be able to make a choice.
The principle of respect for persons should be the guiding light for interoperability with a new principle: duty to share. This fourth principle seems to be the tone set by the recently proposed U.S. Department of Health and Human Services info-blocking rule. Bravo! There will be exceptions that result in withholding data, and the first do no harm principle should be the guide to those exceptions in this new culture of sharing.
True interoperability will facilitate the duty to share, respect for persons, and first do no harm, because decisions about care and access to data can be based on real data for care, not on perceived data-breach risks.
Learning from the Disruptors: Business Cases for Patient Input in Interoperable Exchange
Customer relationship management companies and others dedicated to improving customer experiences are entering into healthcare now.
What can we learn from them that informs interoperability? Customers drive business. Revenue, efficiency, growth, empathy, convenience, and retention are business principles that help not only the customer but also the business that serves them.
What if, as a patient, I was prepared for a visit, understood my care, and knew when and where to get help, all in ways that were convenient for me, efficient for the organization, and effective for my health? Imagine what efficiencies and customer satisfaction would ensue!
Consider this scenario: My day begins with me not feeling well. I check my symptoms on an app. At first, watchful waiting is in order. But as the day progresses, my symptoms are worse. I need to see a provider. I text my symptoms to my provider's designated number and in return I have an appointment ready to go on my calendar based on both my and my provider's availability and the urgency of my symptoms. Prior to my appointment, a series of questions confirms my medical history, my medications, and my adherence and payment information, and educational information is sent to me to prepare for my visit. All data points are reflected in my chart. This exchange alone eliminates wasted staff time, improves clinical information, increases connection and nurtures relationships, and builds better business processes.
Not long ago, a director of preadmission and testing told me that for every 300 beds, there were approximately 10 full-time employees (FTE) dedicated to gathering information from patients. This data-gathering confirmed patients' histories and medications, provided information and education about upcoming surgeries, and helped prepare patients for admission and discharge. Most of the requests for information and education were based on standards for care and were not unique to each patient. The answers that patients provide are unique and need to be included in the record. Automating this preadmission process through interoperability and integrating critical patient-provided information into the record, with rules to escalate when answers warrant intervention, could save wasted hours for both the patient and the preadmission staff as well as increase satisfaction and retention. Just reducing staff by three FTEs could bring hundreds of thousands of dollars back to the bottom line.
Developing Standards to Include the Patient in Meaningful Exchange
As we consider interoperability for patients and patient-generated data, a taxonomy and vocabulary based on consumer-friendly terms may help to cross-reference consumer/patient terms with healthcare nomenclature. This is not a new concept. It's used on many websites, access to articles and journals within EMR and in patient-specific education standards.
As patient-generated data becomes more prevalent, cross-referenced information and semantic interoperability will prove even more important. An effort to coordinate a nationwide standard should be considered, because the next step after access to information will come patients’ responses to that access. Questions, comments, health status and other responses will need to be integrated into the nomenclature of care. This level of interoperability will ensure that patient-generated data is well integrated.
Reorienting the Interoperability Continuum Around the Patient
Healthcare systems are reporting that more and more, interactions with patients are digital: care, care coordination, telehealth, apps, texting, email. This is the opportunity all of us have for interoperability.
In the HIMSS definition of interoperability, "Interoperability is the ability of different information systems, devices or applications to connect, in a coordinated manner, within and across organizational boundaries to access, exchange and cooperatively use data amongst stakeholders, with the goal of optimizing the health of individuals and populations."
Patients, their support network and their provider care teams are all included in this stakeholder group.
Interoperability in a patient-centered world means that patients are served by access and exchange while being engaged in their own care and information sharing – as they see fit or as each moment of care demands.
The views and opinions expressed in this blog or by commenters are those of the author and do not necessarily reflect the official policy or position of HIMSS or its affiliates.
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