Even before the health care industry achieved real, practical interoperability between providers, a new paradigm is emerging. Currently health care data is provider-centric and interoperability is focused on connecting providers. The new kid on the block is Consumer-Directed Exchange (CDEx), which supports the consumer’s right under HIPAA to invoke access to personal health information through a third-party application. CDEx promotes personal health care engagement. Health care consumers and care partners have growing expectations to participate in and even take control of personal health care decisions and to be able to access health information that supports this.
A promising patient-provider connector
In the new value-based health care environment, the individual is, indeed, at the center as care quality is defined by a person’s wellness, not by episodes of care. Costs reflect all the interactions across the continuum of care rather than the discrete actions of providers. Patient benefits are significant and compelling: avoid hospital admissions, fewer adverse drug events, reduced duplication of tests and procedures, better coordination of care for people with complex and chronic conditions, and better-informed treatment decisions.
CDEx holds promise for patient engagement by:
- Educating patients
- Empowering patients to take an active role in their care to improve personal health and lower costs
- Providing better, more convenient access to personal health records through richer patient portals and open application programming interfaces (APIs)
- Supporting self-management and self-service through shared care planning and decision making
- Improving remote patient monitoring
One meaningful use (MU) success was creating an imperative and mechanisms for giving patients access to personal medical records. The practical implementation of this, however, resulted in unwieldy, EHR-tethered patient portals. Consumer-facing functionality that originated in MU stage 3 persists in MACRA regulations and in the 21st Century Cures Act.
CDEx creates the need for modern tools that enable patients to interact with their providers using devices and workflows that are already part of their daily lives. Convenience is the key. CDEx supports patient safety, cost savings, and efficiencies. It also is key to patient engagement and active involvement in care, which improves patient outcomes.
A real-life trauma and interoperability failure
To make it a little personal, I want to share my recent experience with electronic access to my health records. It all started with a bicycle accident that involved multiple fractures of my spine, shoulder, and hip along with other injuries. The accident involved emergency medical personnel at the scene, an ambulance ride to the local ER, and ultimately a helicopter flight to a trauma center in another city. There were diagnostic images, procedures, and medications in the local ER. There was an ER visit at the second hospital and a multi-day inpatient stay that included additional diagnostic imaging. I give you the details to point out that this wasn’t a routine check-up, but rather a health care incident that resulted in numerous images and clinical documentation.
After I regained my composure and had my wits about me again, I naturally replayed the events in my mind and thought about the experience in general. As it relates to this blog post, I clearly remember a manila folder being laid on my chest after I was strapped into the helicopter. I’m not certain of the contents of the folder but I assume there were records related to my care up to that point. Maybe this was just a backup in case the electronic sharing of my records didn’t make the trip to the trauma center. You’ll have to forgive me for not asking at the time. But I do believe the folder is relevant to the topic of interoperability and data exchange…or lack thereof.
Upon discharge, I scheduled a follow-up visit with a local orthopedic surgeon rather than the orthopedist associated with my hospital care. My orthopedic physician had access to the records and images from the local hospital, but not those of the trauma center where the greatest portion of my care was conducted.
I signed up for a patient portal account after my discharge from the hospital. I was also given a patient portal account by my local physician. I was anxious to see the documentation and images from the trauma center and I wanted to review the follow-up impression and plan of care. If need be, I thought this would be a great way for me to share my records and direct the exchange with whomever appropriate throughout my follow-up care and recovery.
Much to my surprise and disappointment, the information in my patient portal from the trauma center consisted of:
- A plan of care to have a flu shot
- A couple of reminders to schedule follow-up appointments
- Current health issues, verbatim, “Trauma, Multiple injuries”
- Two home medications prescribed
- “No allergies on file”
- “You have no medical history on file”
- No images or test results
The information in my patient portal from the orthopedic follow-up was slightly better. There were at least diagnoses related to each of the injured sites along with links to patient education material.
Both portals did provide the opportunity to schedule appointments and to pay outstanding balances.
As it relates to CDEx, there wasn’t much there to share or to engage me as a patient. Interestingly, I received a phone call reminder of my next appointment with the orthopedist and I was encouraged to bring my health records with me. I would have loved to be able to do just that.
A lesson in the value of empowerment
I may or may not represent the norm in terms of patient interest or technical capability, but I really wanted to better understand my condition. I wanted to see the images and the actual fractures. The images were shown to me in the midst of the trauma, but it isn’t the same as having ready electronic access after the fact. I am convinced this would go a long way in helping me fully cooperate in my recovery and better understanding my prognosis, especially from a psychological perspective.
Admittedly, my interest wasn’t so much about directing the exchange and sharing of my health records as it was about patient engagement in my recovery. Engagement is a very large component of CDEx. My episode may not represent the best use case for consumer-directed sharing of health data, but imagine very chronically ill patients with many health issues and numerous providers across the care continuum. Empowering the patient to access up-to-date records anytime, anywhere, and for any reason would be tremendously valuable. The technical complexity involved across various providers and multiple EHR systems could be reduced with the patient at the center acting as the hub for access and data exchange.
Observations from my own experience revealed to me:
- We have not arrived yet with real health care interoperability
- By asking me to bring my records with me, the providers associated with my care acknowledge that access to my records from other providers would be beneficial
- Patient portals available to me contained very little health-related information
- My impression is the portals were only there to check the box related to MU requirements
- There was nothing in the portals to engage me as a patient / partner in my treatment and recovery
- Though I have previously had infrequent interactions with the health care system, very little has changed in how we interact with our providers
- I now recognize from a personal perspective how awesome CDEx could be!
When empowered as co-producers of well-being, not just better health, patients experience self-awareness, confidence, greater health knowledge, and coping skills to manage the impact of illness in everyday life. Empowerment can also increase a patient’s capacity to act on life issues outside the health care setting. For this to happen, health care professionals need to recognize patients and caregivers as key partners in care. This does not mean shifting responsibility onto patients inappropriately. Patients can only be empowered by their physician or caregiver and they need the medical feedback and endorsement for their journey towards self-responsibility.
CDEx has the potential to transform how patients and care partners manage their health and health care and how they engage with the health care system. Whatever steps are taken to transition patient empowerment from concept to practice, integrating the patient’s experience will be essential.
Eddie Hedrick has more than 30 years of experience in the fields of information technology systems and health care. Hedrick provides strategic leadership and management for short and long-term goals related to Health IT aligned with Fresenius Medical Care enterprise strategy. He previously served as Vice President, Product Development for Acumen Physician Solutions.
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