By: Natasha Dravid, Dayna Fondell, and Christine McBride, Camden Coalition of Healthcare Providers
Northgate II, a high-rise apartment building in Camden, New Jersey, is home to more than 300 low-income older adults, many of whom live with disabilities. Northgate’s interdisciplinary team of social workers and a community health worker help residents access the health and social services they need using resources like the Camden Coalition Health Information Exchange (HIE), a collaborative data-sharing platform created to improve care delivery. Recently, a Northgate care team member received an HIE alert that one of their residents, “Mr. Green”, had checked into the emergency department several times in the past few months. A look at Mr. Green’s hospital record via the HIE revealed his driving diagnoses: alcohol intoxication, suicidal ideation, and depression. The information triggered the care team’s community health worker to accompany Mr. Green to his next primary care visit.
Working with Mr. Green and his primary care doctor, the Northgate care team came up with a safety plan that provides: (1) steps for what to do when facing a crisis; (2) language to use with health care providers to ensure that his needs are met; and (3) phone numbers of his care team members. Mr. Green now has the safety plan taped on his refrigerator door, where he can refer to it easily.
The Camden Coalition Health Information Exchange
Mr. Green’s case illustrates the value of the Camden Coalition HIE in making high-quality care coordination and support possible for patients with complex needs. Established in 2010 by the Camden Coalition of Healthcare Providers, the HIE is a web-based application that gives providers real-time access to important medical information for patients, such as diagnoses, medication lists, provider encounters, lab data, and other tools to advocate for patients’ needs. Currently, 119 participating organizations and teams access the HIE. Approximately 4,620 patients are viewed in the HIE each month.
Prior to the HIE, many of Camden’s most vulnerable patients visited multiple hospitals and emergency departments throughout the region without a streamlined way for providers across health systems to easily share and access patient records from other institutions. This caused providers to miss important details and provide patients with duplicative or inadequate care. Recognizing that these extreme patterns of health care utilization and cost did not result in improved outcomes, local hospitals committed to contributing their data to the HIE to improve care coordination for this population. Although the HIE was initially created to identify patients with complex health and social needs, it has evolved to also facilitate collaboration across otherwise fragmented health systems.
Broadening the HIE’s Reach Beyond Health Care
In developing the HIE, the Camden Coalition also identified a strong need for non-health care entities that were serving the same patients to access health data that would help them to more effectively address issues at the intersection of social and medical wellbeing. By that point, Camden-based health care entities had access to patient information through electronic health record systems, but social services agencies did not, which meant they were closed off from major episodes in their clients’ lives. By gaining HIE access, social service providers now have greater insight into their clients’ challenges, including potential medical situations, and can be valuable partners in their care. Health care providers also have the benefit of knowing that care will continue once a patient leaves the hospital.
Previously, a housing case manager may not have known that a client had a documented disability that would affect their housing application or ability to secure and maintain housing. But with access to the HIE, the case manager can gain this valuable insight, partner with their client’s medical providers, and access the documentation they need to effectively advocate for their client and keep them housed.
The benefits of including social service providers in the HIE extend to clinicians by providing them with a more holistic view of a patient’s health, including things like barriers to self-care and community or family assets that can be leveraged for support. A health care provider, for example, may not be aware that a patient lives alone and lacks the support needed to adhere to medication instructions. Alternately, they might not know that a patient has a relative living nearby who checks on the patient daily and provides much-needed support. But by engaging with human service providers like the Northgate care team who may have more knowledge of a patient’s social support system, health care providers can use relevant non-medical details to improve patient care.
In 2014, Northgate II became the first social service agency to gain access to the Camden Coalition’s HIE. Residents who wish to be included in the HIE consent to have the Northgate care team notified in the event that they are admitted to the hospital or visited the emergency department. If a resident is hospitalized, their Northgate care team receives an email notification from the HIE about who was admitted, the name of the hospital, and how to contact the patient.
The benefits of the HIE extend to patients, as well, by reducing the need to repeat themselves at each touchpoint with the health care and social service system. This allows providers and patients more time in the exam room to focus on the patients’ needs and priorities. The members of the Camden Coalition’s Community Advisory Committee — local health care consumers who help guide the strategic direction of the organization — have become some of the biggest champions of the HIE. Many have shared experiences of finally being understood by providers who actually see the full picture of their health system experience.
Overcoming Data-Sharing Hurdles
In spite of these benefits, barriers, particularly related to technical and regulatory aspects, can prevent providers from initiating data-sharing partnerships. Clinical and non-medical partners rightly want to know: Are we acting within the boundaries of the laws guaranteeing patient privacy and confidentiality of personal health information? Are we respecting our patients’ privacy, dignity, and agency? Is our consent process informed enough? Is the data secure? What mechanisms will keep my organization and my clients safe? Do my clients know all of the providers are looking at their data, and if so, are they okay with that?
These concerns center on patient consent and a desire to adhere to HIPAA requirements and confidentiality. The Camden Coalition HIE works to debunk assumptions and introduce scenarios where data sharing within rules and regulations is permissible. Ultimately, data sharing is about people and their health. While we acknowledge providers’ questions, we emphasize how patient care and quality of life can be improved with better information sharing and we do it through formal data sharing and patient consent agreements.
A few decisions made Northgate more comfortable about accessing the HIE. The Northgate care team expressed trepidation about gaining access to medical records because they did not have medically trained professionals on staff, and therefore would not know how to interpret or act on medical data to keep residents safe. To mitigate this unease, they set clear boundaries for how staff would use the HIE — specifically, staff would receive limited information about the resident’s hospitalization or emergency department visit, and they would then facilitate follow-up care. By setting this boundary, the Northgate care team felt more comfortable having access to the data. Over time, as the Northgate care team increased their care coordination with primary care providers and began providing more sophisticated care management services for their residents, the Camden Coalition increased their access to more medical data in the HIE.
The Northgate team also carefully considered how to frame the data-sharing conversation with their clients. They explained to residents the limited manner in which they were using the HIE, and underscored that residents had full control over if, when, and how that data was viewed. They focused on the resident’s dignity throughout the process and built on existing trust between the Northgate team and residents. Furthermore, the Camden Coalition’s emphasis on how to use the platform; clear and well-documented policies and procedures; regular HIPAA training and refreshers for staff; and annual audits eased the Northgate team’s concerns.
One of the thorniest data-sharing challenges involves community-based mental health and substance use treatment services. Patients with co-occurring behavioral health conditions need a high level of privacy protection to prevent disclosure and stigma. They also need tightly managed linkages between their primary care and specialty care services to stay healthy. Despite the need for and value of data sharing, health and behavioral health providers have historically not shared patient information out of an abundance of caution around privacy protection concerns. The Camden Coalition HIE is breaking through these barriers and has actively engaged community-based behavioral health providers in joining the HIE by developing data sharing and information agreements that meet the needs of provider organizations and patients.
Forging New Care Delivery Partnerships Through the HIE
One of the Camden Coalition’s care management initiatives, Camden RESET, which works with individuals who have had frequent encounters with the criminal justice system, benefits from using the HIE. Not only does information about medical care for patients involved in the criminal justice system show up in the HIE, but it has also provided Camden’s care team members with an opportunity to build relationships with medical and behavioral health providers in the Camden County Correctional Facility. In viewing the medical records, Camden Coalition care team members can initiate a conversation about “our shared patient,” rather than making a cold inquiry. Because the jail also uses the HIE, the HIE provides staff at the jail clinic with context about the patient’s history and facilitates more informed medical care.
Mr. Blue, a patient in the local jail, worked with the Camden Coalition through the RESET program. The Camden Coalition learned about Mr. Blue by reviewing his jail arrest data from the Camden County Correctional Facility and hospital utilizations from the HIE and identified him as having high utilization in both data sets. When we began engaging with Mr. Blue, we found through the HIE that he recently had surgery and had a catheter, and his follow-up care required that he see a urologist. With this knowledge, we were able to accompany the patient to medical visits inside the jail and advocate for his needs. By having a window into both the hospital records and the jail’s medical records through the HIE, we were able to provide more effective care coordination and secure him more timely access to a urologist — thereby addressing many complications related to his surgery and the challenges he faced managing his hygiene and chronic conditions in a jail setting.
While data sharing can be daunting, patients like Mr. Green and Mr. Blue illustrate the potential of improved patient care when providers have access to more complete information. The Camden Coalition has made strides in breaking down silos between health care providers, and is now turning its focus to building a bridge between the health care sector and the social services sector. This ecosystem development — creating local networks of organizations that collaborate to serve individuals with complex health and social needs — is critical to improving systems of care. As we explore these relationships, we will continue our commitment to patient dignity, thorough training and onboarding of community partners, and the belief that better care for everyone is possible when data is thoughtfully shared in our community ecosystems.
Natasha Dravid is Director of Clinical Redesign Initiatives at the Camden Coalition of Healthcare Providers. Dayna Fondell is Senior Clinical Manager for Clinical Redesign Initiatives at the Camden Coalition, and Christine McBride is Program Manager of Health Information Exchange at the Camden Coalition.