Community information exchange, or CIE, is a community-based strategy for improving the delivery and integration of healthcare and social services. As its name suggests, it relies on the exchange and sharing of data and information across the healthcare and social services organizations in a community. It is often also called social health information exchange, or SHIE.
CIE and SHIE strategies rely on software tools which collect individuals’ data from disparate organizations and combines data into one persistent, unified database that is accessible to all organizations in the community. Data on individual and family needs, the services they’ve accessed, and their medical history is pulled from multiple sources, cleaned and combined to create a single CIE or SHIE profile.
This structured data is then made available to other health and social care IT systems, and also often made available to patients in the form of tools to help them succeed in their health and social care journey. Everyone benefits from removing organizational and systemic barriers that we all have faced in traditional healthcare models. Through an ecosystem of network partners and an integrated technology platform, care for the whole person can become a seamless experience for both the care providers and the patient and family.
Our recent blog post outlines what it takes for your community to be ready for a CIE implementation. For this post, I spoke with Rich Porcelli, LMHC, Director of Community Engagement here at Activate Care. With specific examples of individuals in need, he shared a vivid picture of the different care models in place in communities in America today, specifically comparing how the average patient and family would experience care in three different models: a traditional care model, a care model with just closed-loop referral management, and a true CIE model.
Patient Experience in the Traditional Healthcare & Social Services Model
Our traditional healthcare model forces community members to both find their own healthcare providers and social services resources, and then navigate to them, along with completing the necessary steps to ultimately access care and services from these providers. This can be taxing and stressful on an individual and it continues to burden community members to use their own tools—such as their wisdom, community connections, and their natural support systems—to remove barriers to access the care they need.
For example, say an individual visits their primary care provider, who provides that individual with a referral to an organization that can help them with low-income heating assistance. When that individual shows up at the heating assistance organization in their community, they’d have no additional support in getting this referral completed, beyond the services provided at that organization. At most, they might have some information about the program, but the program won’t know anything about the client. This already makes for a difficult situation as the client may not understand what they need, what to ask for, or why they’re there. They’ll now have to retell their entire story so the organization can figure out how to help.
In a traditional model, this fragmented information ecosystem often leaves patients feeling frustrated, and encourages a negative view of healthcare’s involvement in social services. A lack of trust among patients is a barrier to proper healthcare, and does not set them up for a successful experience in the future.
Patient Experience in the Closed-Loop Referral Model
A closed-loop referral model removes some barriers that clients face, so they can rely less on their natural tools and more on the system designed to support them. But in this model, we are still merely removing just some of the visible organizational barriers. A patient or client’s experience can still prove to be challenging because we are continuing to rely on patients to have the necessary materials on-hand and ready, and we’re expecting them to know what to do at all stages of their healthcare journey.
These expectations placed on the patient can include paperwork, general social knowledge, access to eligibility information, and documents proving identity and eligibility, such as copies of social security cards, an apartment lease, or approved forms of identification. A closed-loop referral model still leaves behind a good deal of stress due to its reliance on inherent assumptions about what community members should be able to do to access basic health and essential social services.
In the closed-loop referral model, when a referral is sent to the social services organization, the program will agree to help the person, and a minimum data set about the client will be provided to the program. So, when the person shows up to the organization, the process will start a bit further along than in the traditional model, because the program already has some context around the client. However, the client will still have to go through the eligibility process, provide demographic information, complete an application, along with other necessary documentation.
There is still a process here that can be stressful and make the experience overwhelming and difficult to manage, which increases the likelihood that the referral loop does not get closed. This is why referrals fail for upwards of 80% of individuals in need. Our expectations of the impact of a closed-loop referral system need to be re-examined. While the goal of a referral process in healthcare is to provide a more positive experience for patients through more communication and collaboration, it doesn’t effectively do this, as the model still leaves an excessive cognitive and social burden in the hands of the patient to handle and resolve for themselves.
Patient Experience in the Community Information Exchange Model
A CIE (or SHIE) model addresses more of the root causes of health by removing systemic barriers and inequitable practices, while allowing community members to be set up for success because the individual, organizational, and systemic barriers are eliminated.
Back to our example: If the client navigates through a CIE model, the program would already have the information that would help them successfully complete the referral. With all the community organizations using the same integrated system, information is shared within bounds of privacy seamlessly, allowing access to a broader view of the patient. The program now has more context about their clients' health and care, which can all be viewed holistically. This is the foundation for a trauma-informed approach, in which the patient does not have to retell their story to organization after organization, which is an inequitable practice linked with retraumatization.
How CIEs Support Individuals as Drivers of their Own Health
Community engagement is key. If patients can be part of the CIE design from the beginning, the patient’s needs are built into the care process and accounted for at every step of their healthcare journey. This builds trust with the patient and make them feel more comfortable navigating through the healthcare system. As a technology solution that enables a new type of collaboration in the community, the CIE operates in the background to remove logistical barriers to resources that patients often face. This helps them begin accessing solutions to their needs much further along in their journey.
Most times, the burden is on the patient to navigate the often fragmented systems. Even if we set up closed-loop referrals, that doesn't mean we have coordinated systems. A CIE helps coordinate systems and set patients and care providers up for success differently because information is more accessible and can be seen for the whole person, not just that person’s set of needs.