Commentary: How patient advocacy fortifies HIE

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Demand for healthcare information by patients and clinicians will help drive the business need for health information exchanges, according to Dr. Farzad Mostashari, national health IT coordinator. Clinicians and patients should ask for or seek relevant patient information whenever and wherever healthcare decisions are made. Mostashari's timely comments put a spotlight on the role of patient advocacy in care coordination and how that advocacy intersects and enriches health information exchange.

Used in a meaningful way by healthcare providers, health IT should help lower the cost of care, while improving the quality of care, patient satisfaction and the patient-provider relationship. Health IT in the form of personal health records or data-capturing devices for patients ideally should help them be knowledgeable of and manage their conditions. It should also empower them to be their own advocates in this complex healthcare environment. This is an ideal world and goals that the industry is trying to achieve.

The reality, at least for the time being, is that the industry is in the beginning stages of this transformation. Patient knowledge and empowerment are reserved for savvy consumers, who are few and far between. Until we get to an environment in which information follows the patient wherever he or she may go, patient advocates can help identify gaps in care and provide necessary information to the provider on behalf of the patient, all of which will still be valuable once health information exchanges are up and running.

Unfortunately, our healthcare system today lacks patient advocacy, which is what Lindsey Kroll discovered after her own experience as a patient. Kroll, who has worked with the Arizona Health Care Cost Containment as director of performance improvement, was director of provider relations for the Arizona Medical Information Exchange, which was funded by a CMS grant to develop health information exchange. Her role was to study and understand providers' practices and workflows to determine where health information exchange can be adopted to help improve patient care. It was in that role of determining what the exchange could do that Kroll began to think of what people could do outside of the exchange.

Kroll founded Enable Your Care in April 2011 to address both the dearth in patient advocacy and the gaps in care coordination. Enable Your Care advocates are 24/7, says Kroll, who is president of the company. With clinical and health insurance expertise, they literally are with the patient - at the bedside, in the primary care physician’s or specialist's office, even in the helicopter accompanying transplant patients to the transplant center - to help them understand their medical conditions, make informed decisions and manage their conditions when they leave the inpatient setting.

Enable Your Care has partnered with payers after being able to demonstrate ROI with transplant patients who were presenting to the emergency department one to two times a month. Advocates were able to intervene on behalf of the patients when they experienced medical complications and in a three-way call with the physician to help determine the problem, keep the patient at home and set up a doctor visit for the following day.

Advocates will also gather relevant information - with the patient's permission - from the various health providers, bundle the information and submit it to the primary care physician. "Their history is sitting in front of them,” Kroll said. Enable Your Care advocates are trained to organize information and present it to the primary care physicians (PCP) in a format that is aligned with their workflow. If the PCP has an EMR or an EHR, the patient information is tagged so the office can easily transfer the information to their system. Similarly, advocates will bundle information from multiple pharmacies that patients frequent, and conduct three-way meetings so the pharmacist, physician and patient understand what medications the patient is taking, potential interactions and so on.

Kroll also consults for payers and states on interoperability. "While I do believe in health information exchange and health information technology, until states can get this functionality up and running, our advocates have become little miniature walking HIEs," Kroll said. "They are the liaison between every single component of a patient’s healthcare journey."

Consider transplant or oncology patients, who may require a host of services and providers - physical therapy, occupational therapy, home health, and so on. "That's putting a lot of pressure on patients to take care of themselves once they leave the hospital," she said. "We are enabling them and arming them with the right resources and tools to manage their own healthcare by helping them coordinate their care."

As Kroll has demonstrated, advocacy is an invaluable resource in itself. "Until technologies get us to HIE and interoperability and until we get to meaningful use, we as advocates and wellness coordinators are going to be the next phase in healthcare," she said. Indeed, she in dialogue with nursing programs on adding wellness and advocacy components to their curriculum.

Kroll has also been in dialogue with personal health record (PHRs) to bring to market user-friendly, web-based PHRs that are controlled by patients but accessible to advocates for the duration of the patient advocacy relationship, interoperable with EHRs and EMRs and can interface with an HIE. Ideally, through the PHR, advocates can conduct three-way Skype visits involving the patient and physician.

Ultimately, Kroll says, "We need to get to an HIE where everything is being exchanged and patients can trust that everything is being put there in front of them."