Patient Data Access News

Exploring Patients’ Roles in Chronic Illness Care Coordination

Clinicians must support patients as they assume care coordination responsibilities in their chronic disease management.

Patients play an important role in care coordination during chronic disease management.

Source: Thinkstock

By Sara Heath

- Strong care coordination is one of the core necessities for effective chronic disease management.

Patients managing a chronic illness are confronted with a plethora of health information, often coming from multiple different specialists and primary care clinicians. All of this information must be sent from one clinician to the other, with each doctor knowing what the other is doing to achieve the end goal of patient wellness.

Strong care coordination can have many health benefits, from improving asthma care to supporting accountable care organization success. Patients who experience poor care coordination can also see up to $4,500 in cost increases over three years, according to a 2015 study published in the American Journal of Managed Care.

In an ideal world, health information systems and EHRs would be able to seamlessly exchange this information. However, lacking interoperability continues to be one of the largest barriers to care coordination.

Instead, clinicians, patients, and family caregivers are usually at the helm of care coordination. In particular, patients and family members often bear this load.

READ MORE: How Patient Engagement Supports Chronic Disease Management

A 2016 poll from CareMore Health and Harris Poll found that 70 percent of senior patients managing a chronic illness need stronger care coordination from their clinicians.

Thirty-four percent of patients said they had to rely on family members to coordinate their healthcare, and several more said they must coordinate healthcare on their own. Only 30 percent of patients said they used some sort of care coordination service from a clinician office.

Clinicians must be careful when understanding the role of patients in care coordination. While patients – especially those managing a chronic illness – will undoubtedly play some role in coordinating their own healthcare, patients require clinician support.

Clinicians cannot expect the patient to fully assume the often full-time job of collecting, organizing, and sharing their own health information between specialists and primary care providers. Instead, clinicians need to understand the systems, regulatory requirements, and empowering messaging needed to support the patient’s role in care coordination.

Giving patients the tools for care coordination

READ MORE: Arguing for Patient Data Access Amidst Provider Pushback

When patients can access their own medical records, they naturally become more well-versed in their own care. This allows patients to make more informed decisions and helps them better understand further communications with their clinicians.

However, offering patient health data access also has its practical benefits: it allows patients to collect their own health data and send it from provider to provider.

"The consumer is the only person who is present during all of their encounters with the professional healthcare system and often the most important observations are made by the patient and their family members," said Aaron Seib, CEO of the National Association of Trusted Exchange (NATE).

NATE is a health data organization that advocates for patients accessing their own health information.

Seib later echoed those sentiments at the 13th Annual World Health Care Conference.

READ MORE: Care Coordination, Follow-Up May Boost Diabetes Care Outcomes

“Ultimately, the consumer is the only person who is a part of every encounter that they have,” Seib said.

“And if they are going to have 100 percent information awareness to share with their next provider and to participate and actually partner with all their caregivers, not just the ones that are in the HIEs, not just the ones that are using a particular EMR, but every provider that they’re going to get care from, we have to enable them to get data in the app of their choice,” he added.

Patients can take part in care coordination via two different avenues.

First, patients can print out their own medical records from various providers and disseminate them as necessary. However, this method has essentially become outdated and is often arduous.

Second, patients can use view, download, and transmit capabilities (VDT). VDT allows patients to view their health data and download digital copies of that information to send it off to another provider. According to 2016 data from the ONC, 69 percent of hospitals offer patients full VDT capabilities.

Patients can likewise digitally transmit their health data by asking for digital copies of their records from a facility’s health information management (HIM) department. Facilities are obligated by HIPAA to allow patients access to their health data.

While offering patient data access does put some responsibility on the patient, clinicians also have a role to play. Clinician responsibilities include obtaining and making accessible the technology necessary for VDT. Responsibilities also include educating patients in the importance of care coordination and support patient digital health literacy.

Understanding regulatory requirements

Many healthcare professionals would contend that they have a moral and logistical obligation to share health data with patients.  Patients should have data access for care coordination because they are at the center of all care encounters.

CMS backed up those sentiments by creating regulatory requirements calling for clinicians to facilitate patient care coordination. Under the Merit-based Incentive Payment System (MIPS), a part of MACRA, clinicians must offer VDT capabilities to patients to aid patients in care coordination. Eligible clinicians must offer that access to at least one unique patient.

Meaningful Use likewise calls for patient engagement strategies to support care coordination. Eligible providers and eligible hospitals must allow patients VDT capabilities, in part to facilitate strong patient care coordination.

Empowering patients to engage in care coordination

Clinicians can offer patients a multitude of data access tools, but if the patient does not want to take part in care coordination, those tools will be for naught. Considering the health outcomes and reimbursements riding on patient engagement in care coordination, clinicians must employ strategies that empower their patients to participate.

Some clinicians say that simply offering patients access to their health data and educating them in how to use that data is often enough to empower patients. Once patients see the power they have to manage their own care, they are inspired to do so.

However, not all patients will be so easy to engage. Some may not have the wherewithal to manage their own healthcare, or simply will not be motivated. In these cases, clinicians must bolster their patient education efforts, reinforcing how to use health data and patient portals for patients with low digital health literacy.

Patient empowerment, a critical trait for patients coordinating their own care, is a finely tuned characteristic that takes time and collaboration to develop, according to Emil Chiauzzi, research director at advocacy group PatientsLikeMe.

“I think the better way to look at it is that patient empowerment is a skill that involves a variety of components, which has to do with problem-solving, communication, ability to seek out resources, an understanding of disease and medical treatment associated with it,” he explained in a past interview with

To that end, clinicians must work to integrate those different components in the context of care coordination. Clinicians should discuss the importance of good care coordination and the risks when coordination falls short.

“Since education and health management are a big piece of this, a provider should make sure people have an understanding of what skills are associated with managing their condition and make sure that they have access to those educational resources and people to communicate with about their condition,” Chiauzzi added.

Ultimately, engaging patients in care coordination is going to be a team effort. While patients may face some responsibility to coordinate their own care, clinicians must offer the resources and support to empower patients in this endeavor.


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