Supporting the Exchange of Health Information to Benefit Older Adults

Archstone Foundation awarded the California Health and Human Services Agency (CHHS) Office of Health Information Integrity (CalOHII) $71,466 over 15 months to support the integration of social needs care services into health care delivery for the benefit of older adults and others, through an augmentation to the State Health Information Guidance (SHIG).

The SHIG is an authoritative, non-binding guidance for private, local governmental, and non-profit organizations, and serves as a commonly understood legal foundation for data sharing based on real-life scenarios shared by stakeholders. Development of the SHIG came out of a recognition of the ambiguity in how to handle information sharing while protecting the privacy of patients and clients.

As Elaine Scordakis, Assistant Director at CalOHII, explains, “With state laws conflicting with federal laws, organizations were spending a lot of resources to find out which rules they should follow and how they could share client information.”

Often, providers ended up not sharing information out of concerns for liability issues. With the SHIG, CalOHII will “facilitate the exchange of patient/client information so patients can have the treatment they need and realize better health outcomes overall,” Scordakis says.

Leading the Way and Filling the Gaps

CalOHII, which was formed in 2001, is responsible for statewide leadership, coordination, policy formulation, direction, and oversight of the implementation of and compliance with the federal Health Insurance Portability and Accountability Act (HIPAA). Through CalOHII’s efforts, they brought together a Privacy Security Advisory Board and a HIPAA Advisory Board, along with a stakeholder community (made up of counties, health plans and providers, community-based organizations, and foundations) to bring new issues to the forefront.

While CalOHII has the expertise to address the needs of these stakeholders, they have not always had the resources to do so. With a grant from the California Health Care Foundation, they created the first SHIG in 2018, which provides guidance on exchanging behavioral health information. More specifically, it addresses information sharing related to substance use disorders and mental health.

CalOHII has received positive feedback on the SHIG and has presented it to other states and at national conferences. Consistently, this feedback has included requests from stakeholders for the SHIG to be expanded to address their issues.

With Archstone Foundation and additional funding, CalOHII will be able to provide these stakeholders with guidance on information sharing beyond the content of the first SHIG. This augmentation of the SHIG will include data sharing for issues that more directly affect older adults, including public health, homelessness, and food insecurity, as well as issues for minors and foster children, individuals living with HIV/AIDS, and people living with developmental disabilities.

The original SHIG contains 22 behavioral health scenarios derived from real user stories, which clarify how laws apply to actual situations that arise for care providers. The updated version will have several scenarios in each category (for example, public health, homelessness, food insecurity), with stakeholders helping to determine which issues are most important to address and how to address them.

While the COVID-19 pandemic has interfered with work for many organizations, it has also highlighted new public health issues and the need for better coordinated care, which comes from a clear understanding of privacy and sharing requirements. Stakeholders have been sharing their COVID-related needs, including guidance for contact tracing, third-party disclosures, and app information.

“Many people do not think twice before downloading an app and agreeing to its privacy policies,” Scordakis says. “SHIG is trying to make sense of all of this to inform older individuals and those who serve them of what appropriate sharing looks like and how to make that process as seamless as possible for older adults.” That includes answering questions like, “Can doctors redisclose that a patient has a positive COVID diagnosis?”

Speaking from personal experience, Scordakis has even had difficulty receiving information from her father’s doctors, despite his diagnosis of dementia and her role as a caregiver. When a doctor said he was unable to disclose information about her father, Scordakis knew and was able to point out that HIPAA in fact does allow doctors to share health information with family members if it’s in the best interest of the patient.

While it is not typical for caregivers to have detailed knowledge about data sharing and HIPAA policies, even those with this information have a difficult time interpreting it. To help, the augmented SHIG will give providers and older adults easy-to-understand guidance regarding when, how, and why information can be disclosed to a family member.

Beyond a COVID diagnoses, Scordakis says that sharing information on food insecurity and homelessness will allow older adults’ information to be disclosed in an effort to provide them with resources they need.

Accessibility and Direct Impact

“The great thing about the SHIG is that it’s not written for lawyers – it’s structured in a way that anyone can pick it up and read it,” Scordakis says. The material is written at an 8^th-10^th grade reading level and provides a flowchart through relevant scenarios, making it easy for anyone to use, whether the person is a front desk clerk, an older adult, or an older adult’s caregiver.

CalOHII learned from their experience with the first SHIG that the guidance was beneficial when used. However, they also learned that Los Angeles County spent thousands of dollars to duplicate this information, simply because they were not aware of the SHIG. Dissemination efforts will focus largely on getting the SHIG into the hands of individuals who can benefit from using it. In addition, CalOHII will rely on stakeholders who are involved in the SHIG augmentation through advisory groups to distribute the SHIG to their constituents.

One of the CalOHII advisory groups is the Food Insecurity Advisory Group, which addresses just one of the many content areas that Scordakis says older adults are “weaved into.” To demonstrate how the SHIG will be implemented, one of the stakeholders, California Food Policy Advocates (CFPA) will utilize funding from a separate, but companion, grant from the Foundation to support the wide dissemination and engagement of the SHIG.

CFPA will promote best practices and help to reduce fear and confusion over data sharing that is aimed at increasing older adults’ access to food. Given the new era of technological innovation, as well as rising food insecurity, CFPA will use CalOHII’s guidance to move toward equitable access to data sharing by removing barriers and improving capacity for data sharing at the state level.

CalOHII is currently merging with the Office of the Patient Advocate to form the Center for Data Insights and Innovations. This partnership reflects CalOHII’s commitment to working with other organizations and stakeholders to ensure that data sharing guidelines are accessible and reflective of older adults’ needs.

Partnering with organizations provides greater touchpoints for reaching older adults and those who care for them because there is less burden on individuals and organizations to figure out if, when, and how information can be shared, freeing up time and resources for this information to be used in a way that directly serves older adults.

In addition to working with California-based organizations, CalOHII will share the SHIG with a national audience, as they develop a framework that other states can use to improve data sharing access in an effort to better serve older adults.

Carly Roman, Intern, also contributed to this blog post.