ACEs and Interoperability

A key focus of health care delivery in the past several years has been on understanding and addressing how non-medical factors impact an individual’s health – a concept referred to as social determinants of health (SDOH). Though much attention over the past year and a half has been focused on the pandemic and its immediate effects, we cannot forget about other health and social issues that continue to have significant and enduring impacts on people’s lives. An emerging approach to combating lasting effects of early trauma centers on Adverse Childhood Experiences (ACEs), which are traumatic incidents that occur before individuals are 18 years old, categorized into three domains: abuse, neglect, and household challenges.[1,2] These experiences are prevalent — a recent report indicated that over 60% of California adults have experienced at least one ACE, and over 16% have experienced four or more ACEs[3] — and are linked with detrimental, cross-generational outcomes 

ACEs are crucial to address because they can spark a toxic stress response that causes long-term health, behavioral health, and social issues well into adulthood.  ACEs are associated with chronic health issues (e.g., heart disease, cancer, diabetes), mental illness (e.g., depression), and substance use disorders. Additionally, ACEs can negatively influence education and job potential as well as contribute to difficulties in forming healthy and/or stable relationships. The impacts of ACEs also stretch beyond the individual level, resulting in hundreds of billions of dollars per year in economic and social costs.[1] While ACEs have significant and far-reaching repercussions, they are preventable and can be addressed through early screening and appropriate trauma-informed care.[1,2] This type of care takes a patient’s full life situation (including the ACEs that they have experienced) into account, understanding trauma’s extensive impacts, recognizing signs and symptoms of trauma, and folding knowledge of trauma into policies and procedures.[4] In California, the Office the California Surgeon General (CA-OSG) and the Department of Health Care Services (DHCS) are spearheading an initiative called ACEs Aware, which is promoting collaboration across sectors to prevent, screen for, treat, and heal the impacts of ACEs and toxic stress.[5] Since 2020, ACEs Aware has awarded 185 grants totaling over $45 million to organizations throughout California.[6] 

The ACEs Aware initiative highlights communities’ strong need for increased data sharing and interoperability, especially between clinical EHR-based systems and tools used by community-based organizations (CBOs) to provide the non-clinical services central to trauma-informed care. SDOH have extensive impacts, and the ability to exchange health and social services data across disparate systems is crucial to addressing SDOH and improving the health and well-being of individuals and communities. This need for more robust, cross-sector data sharing is reflected in nationwide efforts to expand beyond health information exchanges (HIEs) and focus on a more holistic view of care with community information exchanges (CIEs) – a prevalent theme at this year’s SHIEC conference that I attended (check out this recent blog post from my colleague, Alex Horowitz, to learn more). Through a CIE, members of a care team can access integrated data from multiple sources (e.g., housing providers, food banks, primary care providers), make bi-directional referrals, and establish a longitudinal record to provide more person-centered care.[7] While this level of data sharing is instrumental for trauma-informed care, many barriers stand in the way: 

  • It is challenging and time-intensive to establish a bi-directional referral system in a community, with the need to consider complex issues such as data governance, privacy, and interoperability; 

  • It is imperative (though not always done) to engage with community stakeholders early to assess their needs and readiness for change, as CBOs often face additional challenges in implementing a new IT system (e.g., lack of resources, being burdened with several different reporting systems and requirements); 

  • For ACEs specifically, communities must consider more thorny uses cases, as data is often sensitive (e.g., data from minors, substance use data, psychotherapy notes) and requires special considerations around consent and data sharing. 

At Intrepid Ascent, we’ve recently had the opportunity to learn more about ACEs and the work being done through the ACEs Aware Initiative by partnering with Aurrera Health Group, the technical assistance provider for ACEs Aware grantees. We have additionally been working directly with one of the grantees, Mind OC (non-profit backbone of Be Well OC), as they implement a closed-loop referral system to support ACEs screening and treatment across a trauma-informed network of care. Our firm has also been working closely with different communities to develop policy and technology solutions that support cross-sector data sharing and a collaborative approach to care delivery – work that has been greatly enhanced by the ACEs Aware initiative.    

The focus on reducing the impact of ACEs aligns with larger delivery system reform efforts like CalAIM, a DHCS initiative to change the way Medi-Cal provides and pays for certain services.[8] CalAIM seeks to address the impacts of trauma and SDOH by focusing on the clinical and non-clinical needs of high-risk beneficiaries through comprehensive and interdisciplinary care. This initiative also encourages Managed Care Plans (MCPs) to provide flexible, wrap-around services (e.g., housing transition navigation services, sobering centers, medically tailored meals) that can act as a substitute for other covered services (e.g., hospital care, nursing facility care, emergency department use). MCPs will increasingly need to rely upon referral platforms and engage in community-based closed-loop referrals for both clinical and non-clinical services to meet CalAIM requirements. This in turn will contribute to a larger push for interoperability among EHRs and CBO-facing IT systems. Although not a specific goal of the initiative, CalAIM will therefore work in alignment with ACEs Aware to address SDOH, promote interoperability, and contribute to the shift from traditional clinical-led health information exchange toward community-wide care coordination and data exchange – shifts that are all crucial to screening for, addressing, and ultimately preventing ACEs. 

 1 CDC. “Preventing Adverse Childhood Experiences.” https://www.cdc.gov/violenceprevention/aces/fastfact.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fviolenceprevention%2Facestudy%2Ffastfact.html 

2 ACEs Aware. “ACEs Aware Trauma-Informed Network of Care Roadmap.” June 2021. https://www.acesaware.org/wp-content/uploads/2021/06/Aces-Aware-Network-of-Care-Roadmap.pdf 

3 California Department of Public Health. “Adverse Childhood Experiences Data Report: Behavioral Risk Factor Surveillance System (BRFSS), 2011 – 2017. Oct 2020.” https://www.pacesconnection.com/g/california-aces-action/fileSendAction/fcType/0/fcOid/509387504523927863/filePointer/509387504523928034/fodoid/509387504521175235/ACEs-BRFSS-Data-Report.pdf  

4 Trauma-Informed Care Implementation Resource Center. “What Is Trauma-Informed Care.” https://www.traumainformedcare.chcs.org/what-is-trauma-informed-care/ 

5 ACEs Aware. “About.” https://www.acesaware.org/about/  

6 ACEs Aware. “Community Grant Program Information.” https://www.acesaware.org/grants/grant-program-information/  

7 CIE San Diego. “What is CIE?” https://ciesandiego.org/what-is-cie/  

8 DHCS. “CalAIM Executive Summary and Summary of Changes.” Feb 2021. https://www.dhcs.ca.gov/provgovpart/Documents/CalAIM-Executive-Summary-02172021.pdf  

How the COVID-19 Crisis has Advanced the use of Telehealth

The coronavirus pandemic has dramatically changed the way health care providers care for their patients. Although telehealth has been available for many years, it has not been widely adopted for reasons related to the way telehealth services are reimbursed, federal and state privacy and security requirements, and financial or technical constraints. However, the emergency response to the current crisis has led clinicians to quickly operationalize their telehealth capabilities to care for their patients while adhering to shelter-in-place guidelines. With virtual health care rapidly becoming the new normal, health systems will need to make informed decisions about how to balance the use of telehealth with in-person encounters, while policy makers will need to consider policy and regulatory changes that may need to be made to support the long-term sustainability of telehealth.

Health systems across the country have been urged to rapidly transition to telehealth when possible to prevent the spread of coronavirus. NYU Langone Health, a New York City-based health system that rarely used telehealth prior to the pandemic, went from zero to 5,500 telehealth visits within two weeks.[1] Kaiser Permanente is averaging 65,000 telehealth encounters per day as a result of the expansion.[2]  Telehealth has proven useful during the pandemic in many ways: urgent care centers are conducting assessments remotely for people who are symptomatic and recovering at home; individuals with chronic diseases are managing their conditions with their primary care providers in real-time; and health technology firms are rapidly advancing the development and deployment of tools to support at-home care, such as remote heart and glucose monitors, home lab testing, and app-based health tracking software. This dramatic uptick has been propelled by changes at the federal level to reimburse providers for services, allow telehealth care between states, and relax Health Insurance Portability and Accountability Act (HIPAA) regulations around technology use.[3]

Prior to the pandemic, significant regulatory and legislative barriers made telehealth adoption difficult. In 1997 Congress made telehealth a reimbursable service under Medicare, Medicaid, and the Children’s Health Insurance Program but only in limited circumstances: a patient had to be geographically located in an underserved rural area and the encounter could not take place inside a person’s home. Additionally, interstate licensure has been a barrier because most states require physicians to be licensed in the state where they are practicing medicine. In March of this year the Centers for Medicare and Medicaid Services (CMS) issued temporary policy measures to make it easier for individuals to receive medical care through telehealth during the COVID-19 public health emergency. These changes allow providers to:

  • Conduct telehealth with patients located in their homes and outside of designated rural areas;
  • Practice remote care, even across state lines, through telehealth;
  • Deliver care to both established and new patients through telehealth; and
  • Bill for telehealth services (both video and audio-only) as if they were provided in person[4]

The types of telehealth services covered by Medicare have also been temporarily expanded to include evaluation and management visits provided in inpatient, emergency department, and nursing facility settings, as well as in the patient’s home; certain physical, occupational, and speech therapy services, and psychiatric evaluations and visits. The full list of reimbursable telehealth services is on the CMS website.

At the same time, the U.S. Department of Health and Human Services (HHS) issued a notification of enforcement discretion to allow HIPAA-covered health care providers to use remote communications technologies that may not fully comply with HIPAA privacy and security requirements. During the national and public health emergency, HHS’ Office for Civil Rights will not impose penalties for noncompliance with the regulatory requirements under HIPAA in connection with the “good faith provision of telehealth.” Popular applications that were previously not considered fully compliant with HIPAA that are now permitted include Apple FaceTime, Facebook Messenger, Google Hangouts, Zoom, and Skype; public facing applications such as Facebook Live, Twitch, and TikTok are still prohibited.[5] While the waiver has offered providers more flexibility, the temporary nature of this waiver, along with a lack of clear guidance on which applications and/or services are approved or not, can be extremely challenging for providers to navigate, particularly for smaller physician practices.

Although these changes are temporary, health care leaders are hopeful that the trend will continue in the current, positive direction. During a May 26th press conference, CMS and the Trump Administration signaled that some of the policy changes may become permanent, stating that the president “has made it clear that he wants to explore extending telehealth benefits more widely.”[6]  If some of the temporary measures are made permanent, it will go a long way to address the challenges noted above with the current waiver. In addition to looking to Congress to pass legislation to make certain changes permanent, policymakers will need to carefully balance the benefits with unresolved privacy and security risks and ensure that existing protections in HIPAA are not undermined. Long before the current crisis, privacy and security concerns plagued telehealth technology, particularly lack of controls or limits on the collection, use, and disclosure of personal information. Even as providers and consumers are becoming accustomed to video chatting, platforms such as Zoom have recently come under fire for their lax security controls.[7] More oversight of approved telehealth tools and a comprehensive regulatory framework will be needed to bolster trust and confidence among consumers, health care providers, and privacy advocates.

Another critical factor for consideration is populations of people for whom telehealth might not be appropriate. A recent poll suggests that there still are limitations for remote monitoring among people ages 65 and older. While the majority of them say they have a computer, smart phone or tablet with internet access at home, only 11% have used a device to talk by video to a doctor or health care provider within a two-week period.[8] Patients with mental health, addition or abuse problems may not have a safe and confidential place for virtual visits. Older people of color and those with low socioeconomic status, which recent data has shown are at higher risk of health complications due to COVID-19, experience barriers to telehealth including lack of technology, digital literacy and a reliable internet.[9] If the impact of telehealth on different populations is not carefully studied, there is a risk of negatively impacting quality of care and exacerbating health inequities in our society.

To understand the impact of telehealth with the interventions and short-term policy measures that are currently in place, a structured series of data will need to be established as well as training for clinicians on how to capture this data will be needed. Zeke Silva, M.D., Medical Director of Radiology at Methodist Texsan Hospital, says:

“We are living through one of the largest telehealth pilot studies in history. 6, 12, 18 months from now, we will look back on this time to objectively evaluate what worked and didn’t work. And why. The quality of our interactions, patient experience, outcomes and documentation will be an important part of that analysis.”[10]

The rapid adoption of telehealth is another example of how policymakers and health care and community systems in this country have responded to the pandemic in a remarkable way. COVID-19 will have a long-lasting impact on the role of telehealth in our health care system. With the current ability to capture, share and analyze data, we should leverage this unprecedented opportunity to determine what that will look like in the future while ensuring the appropriate data protections are in place to foster trust and support long-term sustainability.

 

 

[1] Becker’s Hospital Review. “NYU Langone rapidly expands virtual care amid ‘explosion’ of COVID-19 pandemic in New York.” 2020: https://www.beckershospitalreview.com/telehealth/nyu-langone-rapidly-expands-virtual-care-amid-explosion-of-covid-19-pandemic-in-new-york.html.

[2] Becker’s Hospital Review. “Troubleshooting the rapid growth of telehealth, data-sharing during COVID-19: Key insights from Kaiser Permanente & Keck Medicine of USC.” 2020: https://www.beckershospitalreview.com/telehealth/troubleshooting-the-rapid-growth-of-telehealth-data-sharing-during-covid-19-key-insights-from-kaiser-permanente-keck-medicine-of-usc.html

[3] Jercich, Kat. “Telehealth’s post-COVID challenges: Integrating in-person care.” 2020. https://www.healthcareitnews.com/news/telehealths-post-covid-challenge-integrating-person-care

[4] https://www.hhs.gov/coronavirus/telehealth/index.html#waivers

[5] https://www.hhs.gov/hipaa/for-professionals/special-topics/emergency-preparedness/notification-enforcement-discretion-telehealth/index.html

[6] https://www.beckershospitalreview.com/telehealth/some-temporary-telehealth-provisions-will-become-permanent-cms-chief-says.html

[7] https://www.forbes.com/sites/kateoflahertyuk/2020/06/05/zooms-security-nightmare-just-got-worse-but-heres-the-reality/#586628dc2131

[8] Cubanski, Juliette. “During the COVID-19 Emergency.” 2020: https://www.kff.org/coronavirus-policy-watch/possibilities-and-limits-of-telehealth-for-older-adults-during-the-covid-19-emergency/

[9] Velasquez, D. Mehrotra, A. “Ensuring The Growth Of Telehealth During COVID-19 Does Not Exacerbate Disparities In Care.” 2020: https://www.healthaffairs.org/do/10.1377/hblog20200505.591306/full/

[10] Silva, Zeke. “Telemedicine amid COVID-19.” AMA Physician Innovation Network Discussion. 2020: https://innovationmatch.ama-assn.org/groups/ama-physician-innovation-network-public-area/discussions/Telemedicine-amid-COVID-19.

 

Coordinated entry processes have helped identify and support a vulnerable population during COVID-19 Emergency Response

Many state and federal programs in the past five years have focused on building connections between service sectors to better support vulnerable people in our communities. In California, one of these programs funded by the State’s 1115 waiver (Medi-Cal 2020) is Whole Person Care (WPC) and our firm has worked closely with many WPC programs. These county-level initiatives often focus on improving programmatic and data sharing linkages between health, behavioral health, homelessness and other social determinants programs. Given the homelessness crisis in many California municipalities, WPC programs have generally taken-on the effort of linking housing services with other sectors more directly than many comparable 1115 waiver programs in other States.  As a part of this work, many WPC programs have worked hand in hand with their Housing and Urban Development (HUD) funded service networks (called Continuums of Care) to implement coordinated entry policies that define a unified process for prioritizing services and matching people experiencing homelessness to the program that best fits their needs. 

Whole Person Care counties have been working to create relationships, data sharing agreements, and new partnerships between clinics, hospitals, emergency response, and community-based organizations that provide myriad services. These efforts have laid a foundation for better collaboration in times of crisis. The WPC Evaluation team at the UCLA Fielding School of Public Health published an article in the April 2020 issue of Health Affairs on the integration of health and human services in WPC programs. Their related blog post, “How California Counties’ COVID-19 response benefited from the ‘Whole Person Care’ Program” discusses which aspects of WPC innovation and collaboration are being refocused on COVID-19 response.[1] They summarize,

Challenges to emergency response include the need for centralized leadership and rapid and effective information sharing; this is necessary to raise awareness of priorities and implement a coordinated response across all sectors that provide essential health and human services. WPC pilots can address these challenges, as they are typically led by county health or public health agencies and include an explicit focus on development of cross sector partnerships, forming multidisciplinary care teams, and building data sharing infrastructure to support care for vulnerable residents. 

One of the most important cross-sector collaborations for effective COVID-19 response that we have witnessed is between health and housing. In order for counties to implement more effective and safe shelter in place protocols for all people experiencing homelessness, and quarantine for people who test positive for COVID-19 or have symptoms, they have had to quickly and creatively expand access to shelter and emergency housing. Many are keeping watch on how the state is ramping up access to motel rooms and less dense shelter options through Federal Emergency Management Agency (FEMA) funding and partnerships with local motels (see the recent California Health Care Foundation blog post on COVID-19 and Homelessness[2]). Governor Newsom announced Project Roomkey, with 75% FEMA matching funding for up to 15,000 hotel/motel rooms only two weeks after issuing the state stay at home order.[3] 

While generating supply is one critically important piece of the solution, having a system for assigning people to resources is another piece. The work that counties have done over the past 4 years to design and organize county-wide coordinated entry housing service triage systems have also contributed to effective response in a time of crisis. HUD’s “Coordinated entry policy brief” defines the qualities of effective coordinated entry processes, which, “…help communities prioritize assistance based on vulnerability and severity of service needs to ensure that people who need assistance the most can receive it in a timely manner.” [4] Many counties are using the coordinated entry processes established between networks of service providers to funnel housing and shelter requests for COVID-19 response and make sure that they are handled in a consistent, fair, transparent, and rapid manner. Counties have built strong and structured relationships with service partners through WPC and coordinated entry collaboration and are putting those relationships and processes to work quickly for identifying the community’s most vulnerable, prioritizing outreach, housing vulnerable people quickly, and supporting them once they are housed by connecting to additional services and supports.

In Marin County, WPC had already brought together a multi-disciplinary team to provide wrap around services to clients with complex needs before the current emergency. Their WPC and coordinated entry teams worked closely together to focus on their goal of ending chronic homelessness in the County. These same teams are now providing leadership in the COVID-19 emergency response and all emergency housing efforts are functioning through the established Coordinated Entry List processes.[5]  Similarly, in Alameda County, the coordinated entry processes had already created a shared managed list of people experiencing homelessness and their assessed relative vulnerability, called the “By Name List.” This list is currently helping providers target outreach and efforts to find temporary housing for those most at risk of serious outcomes from COVID-19 exposure. Contra Costa County created a new division to bring together housing and health initiatives called Health, Housing and Homelessness. This division manages their coordinated entry list, and during the COVID-19 emergency has worked to develop and implement rapid and creative solutions to support people experiencing homelessness during this crisis, from reducing density in shelters, securing hotel rooms, distributing tents and handwashing stations, and outreach and education. Their efforts are described in a recent publication called “COVID-19, 90 Days in Review; Contra Costa’s Pandemic Response.”[6]

One leader of a local social service organization recently reiterated that housing is often the most important social determinant of health. Coordinated entry processes are working to make sure we are matching the housing resources we have to the most vulnerable residents in our communities and can be an important model in other California counties, but also in other States where cross-sector collaboration is happening under the auspices of different programs, or in the form of local community initiatives.    

 

[1] Pourat, Nadereh, Emmeline Chuang, Leigh Ann Haley. “How California Counties’ COVID-19 response benefited from the ‘Whole Person Care’ Program” Health Affairs Blog. April 28, 2020. https://www.healthaffairs.org/do/10.1377/hblog20200427.341123/full/

[2] Bion, Xenia Shih. “Homelessness and COVID-19 collide in California.” California Health Care Foundation Blog.  April 6, 2020. https://www.chcf.org/blog/homelessness-covid-19-collide-california/

[3]The Office of Governor Gavin Newsom. “At Newly Converted Motel, Governor Newsom Launches Project Roomkey: a First-in-the-Nation Initiative to Secure Hotel & Motel Rooms to Protect Homeless Individuals from COVID-19:  April 3, 2020: https://www.gov.ca.gov/2020/04/03/at-newly-converted-motel-governor-newsom-launches-project-roomkey-a-first-in-the-nation-initiative-to-secure-hotel-motel-rooms-to-protect-homeless-individuals-from-covid-19/

[4] Housing and Urban Development. “Coordinated Entry Policy Brief.” 2015: https://files.hudexchange.info/resources/documents/Coordinated-Entry-Policy-Brief.pdf

[5] Marin County Whole Person Care Website: https://www.marinhhs.org/whole-person-care

[6] Contra Costa Health Services. “COVID-19; 90 Days in Review; Contra Costa County’s Pandemic Response, May 2020.”  https://813dcad3-2b07-4f3f-a25e-23c48c566922.filesusr.com/ugd/ee8930_fae73bfbf7a04ca793c824803cd552a4.pdf

 

Uncertainty and Innovation

 “The systemic frustrations are the most exhausting…Today, we ran out of oxygen masks for the patients to use. So much work goes into trying to locate and obtain more. We had a shortage of oxygen tanks, so we connected more than one patient to larger tanks – stuff we normally wouldn’t do. Will we run out of masks entirely? People can give you answers, but they are not witnessing what is happening in front of you. People can tell you it will be O.K., and it is solvable, but this has never happened before.” These are the words of Dr. Hashem Zikry, an intern in the emergency-medicine residency program at Mount Sinai Hospital in New York City currently serving a six-week rotation at Elmhurst Hospital in Queens.[1]

People can tell you it will be O.K., and it is solvable, but this has never happened before. The coronavirus is a black swan, to use the title of the book by Nassim Nicholas Taleb[2] on the dramatic impact of highly improbable events. A sense of uncertainty is pervasive today in the wake of this black swan, as standard models for understanding public health, the economy, and social relations have broken down. In health care, best practices for evidence-based medicine are in flux. To quote Dr. Zikry again, “‘We ourselves are so confused and scared, and every day when we come on shift it seems like there’s a different protocol,’ – the guidance comes from the state Department of Health – ‘for who are we testing, who are we admitting.’”

Leaders in other spheres find themselves in similar circumstances. Prime Minister Mark Rutte of the Netherlands recently noted that leaders today “have to make 100 percent of the decisions with 50 percent of the knowledge, and bear the consequences.”[3] This can be hard for the public to hear at a time when people seek clarity. We want our doctors to calmly make definitive diagnoses, our hospitals to follow proven procedures, and our policy-makers to make decisions based on facts for the collective good. We’re looking for expertise (just look at the widespread popularity of, and sympathy for, Drs. Fauci and Brix), while the experts are saying back to us: we don’t know.[4]

But we are learning fast. The amount of new information being generated and circulated and absorbed today is shockingly high. The ineffectiveness of long-established norms in the face of the coronavirus has unleashed improvisation and innovation, from connecting multiple patients to an oxygen tank to the race for a vaccine to new social practices, and lives are at stake along every link in the chain. As challenging as this has been, it is also freeing, with new questions emerging as we acknowledge the limits of our understanding.

This is how science works, including medicine. Science is humble. A hypothesis or a diagnosis, however well-informed, is not dogma. It must be adapted as new data emerge and as new frameworks for interpretation replace older models. The same is true for any evidence-based protocol or best practice enshrined in policy. These are all artifacts of informed adaptation in an uncertain world.

Some people and organizations and countries will be more effective than others in responding to uncertainty with impactful innovation. Leaders with epistemological modesty, like the Prime Minister of the Netherlands, are best prepared to manage the changes of our time through their responsiveness to new data and ideas. The same is true of clinicians like Dr. Zikry, acutely aware of what they don’t know.

Those of us working in health information technology have a unique obligation to equip these decision-makers with the best information possible. Action cannot wait. We must redouble our efforts to improve data-sharing and analysis to enable the next life-saving clinical decision, the next enlightened policy, and the next brilliant insight that changes everything, again.

[1] Galchen, Rivka, “The Longest Shift,” The New Yorker. April 27, 2020.

[2] Taleb, Nassim Nicholas. The Black Swan. Random House. 2007.

[3] NLTimes, March 12, 2020.

[4] Budasoff, Eliezer, “No Estamos Listos Para El Incertidumbre,” El País, April 25, 2020.

Privacy and the Pandemic: Part 1

 

For nearly 20 years, the Health Insurance Portability and Accountability Act (HIPAA) has carefully protected the privacy of individual’s health information, while still promoting appropriate data sharing and communications among health care providers. In previous posts we have talked about the importance of data in the response to the COVID-19 crisis – data must be made available when and where it is needed to support patient care and public health activities. While privacy remains a top concern in healthcare, this is an unprecedented time for our country and our health care system is being challenged in new ways. If entities subject to HIPAA are constrained in their ability to share critical data or they are worried about penalties for non-compliance, then the effectiveness of that data is diminished.

Although the HIPAA Privacy Rule is not suspended during the current public health and national emergencies, the HHS Office for Civil rights (OCR) is committed to “empowering medical providers to serve patients wherever they are during this national public health emergency.”[1] A critical part of the response is ensuring data is made available to support public health activities. The HIPAA Privacy Rule already allows certain information to be shared to assist in nationwide public health emergencies, as well as to assist patients in receiving the care they need. It also gives patient’s certain rights regarding how their information can be used and shared.

To ensure the flow of data is not impeded, the US Department of Health and Human Services has exercised its authority to waive sanctions and penalties for non-compliance with certain provisions of the HIPAA Privacy Rule by covered entities and their business associates. The enforcement discretion does not extend to any obligations under the HIPAA Security or Breach Notification Rules, but it does free providers from the added stress of navigating complex legal and operational requirements so they can focus on providing care to impacted individuals, communities, and slowing the spread of COVID-19. 

Limited Waiver of HIPAA Sanctions and Penalties During a Nationwide Public Health Emergency

Enforcement Discretion for Business Associates

Enforcement Discretion for Community-Based Testing Sites

To learn more about HIPAA and COVID-19, including updated guidance for HIPAA covered entities and business associates, visit the OCR website.

In future posts, we will explore in greater detail how the government and technology sectors are working together to flatten the curve while still protecting individual rights to privacy. We will also share how the current crisis is helping to remove roadblocks related to telehealth and sharing sensitive information such as substance use disorder treatment records. Often in times of crisis, opportunities emerge to create long-lasting positive change. Hopefully this crisis is no different and the health care community can rally together to focus less on when and how data can’t be shared and instead focus on “getting to yes”.

[1] https://www.hhs.gov/sites/default/files/hipaa-and-covid-19-limited-hipaa-waiver-bulletin-508.pdf]