Component Five: Data Collection, Management, and Security

Why is data important? For a number of reasons. Data can be used to improve care and services both at the individual and organizational level. It helps to center client needs and input in your work. Data can inform who you hire, your staffing model (types of roles), and trainings. Additionally, it can support fund development efforts. It can help you better articulate community needs and track your impact. Data can support the development of partnerships, especially with healthcare entities. This component will cover the importance of screening for health and social needs, making referrals, collecting/storing/securing your data, and using the data for evaluation.

Screenings for Health and Social Needs

To identify individual and community needs, organizations should implement standardized health and social needs assessment screenings. There are numerous versions of screening tools available, so it is important to identify one that best aligns with the community you serve. You should also consult with any existing local health/social service partners to determine what, if any, screeners/tools they use and consider adopting their model.

For individual community members, the screener will allow your organization to better understand their needs and put in place a plan to address and track those needs. If an individual notes mental health challenges that they are experiencing, as an example, your organization can then work to make sure that this community member gets connected to and receives care from a local mental health agency. You can track progress over time and make sure that this individual's needs are being met.

At the community level, the screener will allow your organization to better understand the health and social needs most often exhibited by community members. While the individual experiencing a mental health challenge referenced before can be connected to treatment, if you discover that community-wide mental health challenges exist, then an alternate strategy might be pursued (e.g., weekly on-site visits from a mental health practitioner and classes on stigma reduction and self-care).

This screening data is important in forming a relationship with potential health partners as well, as they will want to know this type of community-level data, especially if your organization hopes to establish some type of financial partnership with the provider. Data such as these are the core component of any value proposition. Common categories of health/social needs to consider tracking include living situation (if not provided by your organization), food/food security, transportation, safety, employment/income, financial strain, physical activity, substance use, mental health conditions, health conditions, language and translation needs, risk factors such as living alone or in an unsafe environment, amongst other SDoH. CHWs would not only support the collection of this information but also track whether the identified needs are being addressed.

To prepare for potential health partnerships, additional categories for data collection could include insurance/insurance provider, primary care doctor and affiliation, preferred hospital, preferred pharmacy, health service utilization (last time you went to the doctor/regularity of doctors' visits), amongst others. As partnerships are pursued/formed, the partner organization should be engaged to identify any other measures for tracking.

Resources: Screening Tools

Making Referrals to Address Identified Needs

Once a need has been identified, your organization must work to connect community members with a resource to address that need. Whether it be an internal referral to a program within your organization or an external referral to a partner or non-affiliated organization, these "hand-off" points are critical to ensure that the individual's needs are being met. Ensure an internal system is established to manage and track referrals. These referrals and services should be documented, to minimize the likelihood that anyone will fall through the cracks.

Similarly, when referring to an external partner, there should be a system established that clearly documents how referrals are made and tracked. This system should be more formalized than a phone call/email to the partner's public contact, and, depending on the type of partnership, could be captured in a Memorandum of Understanding. In either case, referrals and services should be documented. There are many different systems/tools that could be leveraged to facilitate this referral process (see the bulleted list below); however, a less technological referral system could look like this.

A CHW calls/emails the scheduling coordinator and/or clinic manager at XYZ provider informing them of a client needing an appointment.
XYZ provider confirms receipt of the referral and responds with appointment availability within 24 hours.
The CHW supports appointment finalization and coordinating any transportation needs.
Following the appointment date, XYZ provider emails the CHW to confirm the community member was seen and identifies next steps the CHW may be able to support.

Referring to an external entity with which you do not have a partnership can be more difficult but is necessary. In these cases, the referral may take the form of phone calls made by the CHW to support the scheduling of an appointment. This outreach should be documented, and follow-up should be conducted to ensure that the community members receive the care they need. Formal partnerships should be sought for any external organizations that community members are regularly referred to.

There are systems and tools designed to support the referral process and ensure access to needed services. These tools can be used for referrals to either existing partners (if the partner uses such a system to manage their referral intake) or to organizations with which you do not have relationships currently. It is worth exploring what systems are prominently used within your service area, and consulting with any local partners to determine whether they use such a system.

Resources: Social Service and Referral Navigation Tools

Collecting, Storing, and Securing Data

Data will be collected using the screening tools identified above, supplemented by ongoing engagements with community members that should be documented to create a fuller understanding of individualized needs. This community member data may include Protected Health Information (demographic information, medical history, conditions, etc.), all of which are protected under the Health Insurance Portability and Accountability Act (HIPAA). HIPAA violations carry heavy penalties and so it is important to consider what you collect and how you store that information. One important way to reduce organizational risk is to get residents to sign a release allowing the collection, use, and sharing of information.

The adoption/usage of a data management system remains the best way to ensure data security. While more robust systems can be quite expensive, others with simpler functionality offer a lower cost point.

Resources: Data Management Platforms

Data Evaluation and Use

As described above, the data you collect at the individual and community levels should be used to inform your work. At the individual level, this means using the information collected to drive referrals and inform the level of care and services you provide. At the community level, this means using the information to inform potential partnerships and organizational decision-making (e.g., we should partner with a food shelf because a large portion of our residents are food insecure). These are both simple forms of evaluation and putting data into action.

In addition to those uses, it is important to regularly assess the effectiveness of your work through outcomes evaluation. While outcomes can be more difficult to track than outputs (e.g., referrals completed), they are crucial to articulating the impact of your work. Screeners represent a point-in-time assessment of an individual's needs. If that information is accurately stored in a HIPAA-compliant system, however, it can be used over time to show the impact of your work at the individual and community levels. If screeners are completed annually, as an example, you could look back on the data and assess the number of residents that showed improvements in their reported health/behavioral health conditions, doctors visits, food security, employment/income, etc. Examples could be:

Of the residents assessed in 2022 and 2023, 60% showed a reduction in the number of preventable health conditions reported.
Of the residents assessed in 2022 and 2023, there was a 40% increase in the number with an established primary care provider.
Of the residents assessed in 2022 and 2023, there was a 20% reduction in the number reporting food insecurity.

These types of outcomes evaluation would help to speak to your organization's successes and could make partnerships with health partners easier to pursue. They are also important to inform quality improvement efforts. You may find that residents actually showed a decrease in food security, as an example, which would warrant further investigation and action to address this emerging/unmet need.
When pursuing this type of outcomes evaluation, it is important to think carefully about the impact that you are trying to create through your program and then identify how you will assess progress toward the identified outcomes. Developing a program and/or organizational theory of change may be helpful to inform your data evaluation plan. The Annie E. Casey Foundation has a robust resource guide that can support this effort. The California Health Care Foundation has also developed a CHW resource guide that includes a section on data collection and program measurement.