Objectives: Learn how substance use disorder (SUD) treatment organizations view and respond to changes in confidentiality and disclosure law following adoption of CARES Act Sec. 3221 and prior to promulgation of revised implementing regulations.
Methods: Online survey followed by informal interviews. Representatives of SUD organizations reported their degree of awareness of Sec. 3221 provisions and their organizations’ views on amendments to disclosure practices; current and future changes of organizational policies; difficulties anticipated in implementing new rules; and preferences for resources.
Results: Forty informant surveys on 30 organizations completed. Participants (62.5 percent) indicated being somewhat knowledgeable about Sec. 3221. Evenly divided positive and concerned views on Sec. 3221 reflect tension between preserving confidentiality of patient records and improving coordination of care. Most (76.7 percent) reported organizational discussions on Sec. 3221. Some (30 percent) identified changes to make in near future. Over a third expected few or no barriers to implementing changes to privacy and disclosure practices, while most (64.7 percent) expected hindrances including complexity and tensions in the law, staff education, cost, technological adjustments, and changes in the ways SUD organizations interact with external organizations and individuals. To overcome barriers noted, participants expressed desire (66.7 percent) for teaching tools such as webinars and templates to follow.
Conclusions: SUD treatment organizations began thinking of and planning for proposed changes well before expected implementation of Sec. 3221. Their concerns reflected practicalities of implementation, determining content of law, and wondering about the extent to which it solves problems (improving coordination of care among various providers) or endangered other goals (protecting confidentiality of SUD patient records).
Keywords: Part 2, CARES Act Sec. 3221, substance use disorder treatment organizations, confidentiality, coordination of care
In March 2020, Section 3221 of the Coronavirus Aid, Relief, and Economic Security Act (hereinafter referred to as Sec. 3221) became law, calling for substantial changes in long-standing privacy and confidentiality regulations (42 U.S.C. § 290dd-2), which had protected the personal health information of patients with substance use disorder (SUD) who are treated by federally assisted SUD treatment organization providers. This change creates a set of challenges to patients and providers in that it shifts the working presumption of the law from restricting disclosure of SUD patient records to encouraging Health Insurance Portability and Accountability Act (HIPAA)-like disclosure.
Existing law, including its implementing regulations (42 C.F.R. Part 2) (collectively, “Part 2”), had restricted whether and what identifiable health information of such patients may be disclosed without the patient’s prior written consent. Part 2’s central purpose was to encourage patients to seek and remain in treatment by ensuring the confidentiality of their SUD information.1-4 That contrasts with HIPAA, which permits treating providers and other regulated entities to share identifiable information for treatment, payment, and healthcare operations (TPO) without a patient’s additional authorization or consent.
Sec. 3221 changes Part 2 most notably by streamlining disclosure requirements to align more closely with HIPAA by expressly permitting use of one-party consent to authorize all subsequent disclosures,5 as well as re-disclosures, of Part 2-protected SUD information for at least HIPAA-permitted TPO purposes, unless the patient revokes consent. In contrast, the prior rule required patient consent for each disclosure of the patient’s Part 2 data (including for TPO).6
Ease-of-disclosure versus privacy-of-records is a controversial issue. On one hand are the benefits of improved coordination of care.7 By authorizing disclosure with a single act of consent, patients can facilitate the integration of their care, enabling their healthcare providers to work together more easily for the patient’s benefit. Illustrating the problem, one study found that use of electronic health information exchange (HIE) on discharge from acute care hospitals was 88 percent, while the frequency from psychiatric units was only 56 percent.8 More expansive consent would also facilitate such activities as quality improvement, claims management, patient safety, training, and strengthening of program integrity.
On the other hand, a high degree of confidentiality is thought to be necessary to help SUD patients feel safe enough to seek treatment. Indeed, that was one of the central motivations for the initial statute, 42 U.S.C. 290dd-2, which led to Part 2.9 Without such protection, the concern is that fewer patients will obtain treatment and society’s SUD challenges will persist or worsen.
Under Sec. 3221, SUD patients can give broad and perpetual permission for disclosure of their health information without appreciating how extensive that consent might be.10 If shared with an HIE, disclosure becomes widely available for all permitted uses. At the time of granting consent, typically at the initiation of care, patients are unlikely to anticipate the extent or consequences of future disclosures and uses of their SUD information. Later revocation of consent is legally possible, but then the burden is on patients to initiate the revocation, and carrying out the patients’ changed wishes presents practical difficulties. Once disclosed and re-disclosed, information cannot easily be undisclosed.
Sec. 3221 attempts to mitigate risks associated with relaxed limitations on disclosure through several other vital provisions: 1) tracking of disclosures of Part 2 information; 2) continued emphasis that Part 2 information may not be used in criminal, civil, or administrative proceedings against the person suffering from SUD; 3) breach notification reporting requirements; 4) shifting of enforcement away from the US Department of Justice (DOJ) to HHS with new civil penalties and strengthened criminal penalties for violation of those protections; and 5) an express prohibition against using Part 2 information to discriminate against a person with respect to that person’s treatment, employment, worker’s compensation, housing, court access, social services, or benefits—known issues for people with SUD.11-13
The CARES Act, containing Sec. 3221, became law on March 27, 2020. Enabling regulations were to be drafted by the US Department of Health and Human Services (HHS) within one year, but doing so has taken longer. As of this writing (March 2022), no proposed amended regulations have been announced. With amendments to the law coming one on top of another, a former director of the Center for Substance Abuse Treatment at the Substance Abuse and Mental Health Services Administration (SAMHSA) has characterized the situation as “mass confusion.”14
What are SUD treatment organizations doing during the interregnum between the passage of the statute and the promulgation of new implementing regulations? This study used the period of delay to explore stakeholders’ knowledge, opinions, plans, and actions regarding Sec. 3221’s alterations to Part 2. Specifically,15 1) awareness of the new statute, 2) views on revisions to disclosure practices, 3) internal discussions regarding changes within organizations, 4) anticipated difficulties implementing provisions of Sec. 3221, and 5) preferences for assistance or resources to facilitate compliance.
Evidence-based data on the perspectives and needs of SUD organizations might facilitate the work of those organizations, as well as entities trying to assist them in implementing the new law. A 2021 scoping literature review of Part 2 recommended further “research on Part 2 and [HIPAA] alignment,” as well as on the actual, measured effects of Part 2 on patients, providers, and other stakeholders.16 Therefore, not only is there a need for stakeholder engagement in Part 2 modernization but also for research on the rationale and feasibility of Part 2 alignment with HIPAA.
Study Site and Participants
Our study focused on SUD treatment organizations in Arizona, of which there are 137. In addition to Arizona being where the researchers are located (and therefore have relationships that facilitated carrying out the study), Arizona is a reasonably representative state for this research. The center of Arizona’s population is Maricopa County, which contains over 61 percent of the state’s population.17 As of the 2019 census, Arizona has a population of 7,278,717, with a racial makeup of 82.8 percent white, 5.3 percent American Indian and Alaska Native, 5.1 percent Black, 3.7 percent Asian, 0.3 percent Native Hawaiian and Other Pacific Islander, and 2.9 percent being two or more races.18 Hispanics and Latinos of all races make up 31.6 percent of the state’s population; non-Hispanic whites make up 54.4 percent. Arizona has the third highest number (and the sixth highest percentage) of Native Americans of any state in the Union. The Arizona Health Care Cost Containment System (AHCCCS) is Arizona’s Medicaid. AHCCCS implemented Complete Care (ACC) in 2018, a system that integrated physical and behavioral health (mental illness and SUDs) services to treat all aspects of members’ healthcare needs under a chosen health plan.19 ACC encourages coordination between providers within the same network to achieve better health outcomes for members. The Arizona Substance Abuse Partnership (ASAP) serves as the single statewide council on substance abuse prevention, treatment, and recovery efforts. Arizona also has a single state-based HIE, Health Current. Health Current is a public-private partnership that supports the medical record exchange between behavioral and physical care providers.
Following approval from the Arizona State University Internal Review Board (IRB) (Study 11902), researchers began recruitment of persons occupying positions within SUD organizations. Information sought included: (1) their organization’s policies concerning confidentiality and sharing of patient records, and (2) planning for possible changes in those policies.
Outreach and recruitment were undertaken via email with the help of the Arizona Council of Human Service Providers (ACHSP) and the Arizona Opioid Treatment Coalition (AOTC), which sent invitations on our behalf to their members. Additional organizations were identified using the most current edition of the SAMHSA directory.20 Potential participants were provided an overview of the project, its goals, and participant inclusion criteria, and were invited to visit the survey website.
ACHSP, the main source of participants, recruited from a pool of 105 member organizations. Most or all members of ACHSP are also part of the AOTC. The SAMHSA directory listed 137 unique SUD organizations in Arizona, not all of which are treatment providers. We were, therefore, sampling from a population of between 105 and somewhat under 137 organizations. Thirty unique SUD organizations were represented in our collected data. Thus, the response rate for organizations was somewhere between 28.6 percent and (somewhat more than) 21.9 percent.
The main unit of analysis of the study was the organization, and the individuals we surveyed were informants about those organizations. Responding to our invitations, a total of 65 surveys were started and 40 individual surveys were substantially completed and analyzed. All informants were English speakers over the age of 18.
An online survey using Qualtrics was developed that included demographic information, multiple-choice questions, and free-response questions. The survey (Appendix 1) took about 10 minutes to complete. At the end of the survey, participants were invited to arrange a time to discuss the issues further with a member of the research team. Nine volunteered to do so.
The multiple-choice survey data were analyzed using descriptive statistics. For seven of the organizations, we had data from more than one informant. Responses from those multiple informants were combined to reflect the actions and views of their organization. Free responses in the survey were analyzed in MAXQDA 2020. (MAXQDA 2020 is an advanced qualitative and mixed methods software package used for comprehensive qualitative data analysis. See https://www.maxqda.com/new-maxqda-2020.)
Responses were organized by participants and coded within each free response question, with researchers checking whether participants from the same organizations provided conflicting information. Thematic analysis was conducted using participants’ full question response as the code of analysis by two authors to identify emerging topics and concerns from organizations regarding Sec. 3221.21 Over three iterations, two authors assessed differences in their coding, and discrepancies were resolved by consensus to reach complete agreement.22,23 Codes were organized by free-response topic.
Table 1 lists the job titles of the informants, arranged (and grouped) according to seniority level in their organization as indicated by job title. Table 2 lists their roles in their organization, arranged (and grouped) by how “close” or “far” they seem to be to the problem at issue. When asked about their knowledge of Sec. 3221 and Part 2, participants responded by indicating they were: very knowledgeable (22.5 percent), somewhat knowledgeable (62.5 percent), uncertain, (5 percent), not very knowledgeable (10 percent), or not at all knowledgeable (0 percent). These responses suggested that our respondents were informed about their organizations’ reactions to Sec. 3221.
Structured Survey Response
The collected data reflect actions, plans, and concerns at the level of those organizations–that is, by the collective, internal policy team rather than those of the individual respondents. Regarding discussions of Sec. 3221 at the policymaking level within organizations, 76.7 percent of organizations reported having such discussions, 20 percent had not, and 3.3 percent did not know.
Of the organizations that reported having discussions at the policy level, 25 percent had already started making changes in line with Sec. 3221, 30 percent had identified changes they intended to make, 25 percent were waiting for more concrete federal guidance before making their decisions, 20 percent said their discussions were only very general, and another 15 percent indicated their discussions were of some other nature.
Informants provided more detailed comments in response to semi-structured questions in the survey, and a subset of them also participated in subsequent informal conversation with one of the researchers, providing further information. Themes and subthemes of responses to the open-ended questions in the written questionnaire are enumerated in Figure 1. Illustrative verbal responses from both the questionnaire and informal verbal discussion are listed in Table 3, grouped by topic.
Of the few organizational changes already made or being made in relation to Sec. 3221, nearly all focused on disclosure policies and practices (83.3 percent). In addition, one organization addressed re-disclosure policies: “Reviewed and modified language on the redisclosure policy.”
Of changes being contemplated by SUD organizations, most responses focused on privacy practices. This subtheme contained a diversity of topics, including consent practices, coordination of data flow, re-disclosure, and program impact. For example, one respondent noted that the organization was anticipating changes to “Consents and changes with collaboration with PCPs [primary care physicians] and HIE.”
Participants were also asked about any barriers the organization had experienced that they anticipated might impede the implementation of new policies and practices designed to respond to Sec. 3221. This question elicited 34 responses, including specific challenges such as educating staff (11.8 percent), adapting information technology (8.8 percent), and cost (2.9 percent). Others were more nuanced, such as complexity and tensions of Sec. 3221 (20.6 percent) and dealing with external agencies (which, at least initially, were not expected to be synchronized with the changes being made by SUD organizations) (14.7 percent). Comments reflecting difficulties interpreting the law included: “Inconsistencies with how the regulations are interpreted and implemented” and “There have been either gray areas, or areas difficult to understand when it comes to what the law states.” But 35.3 percent of respondents indicated they anticipated no barriers or very minor barriers.
Respondents were then asked about assistance and resources they thought would be helpful for overcoming barriers to putting Sec. 3221 policy changes into effect. Organizations expressed a desire to be educated and advised, notably through webinars (66.7 percent) and to be provided with teaching tools (53.3 percent), such as models and guides to use as templates for developing their own forms and policies. For example, one respondent commented that a “Step-by-step guide of the changes and recommendations of correct implementation … would be useful.” Another participant specified some of what might be included in webinars: “Lots of webinars for the provider community so we are on the same page. More clarification around the designated record set and when non-Part 2 agencies have a Part 2 program operating within—unable to segregate the records.” Further, providing Sec. 3221 education beyond the domain of SUD organizations was thought to be beneficial: “A big reason why HIPAA has been so effective is because it is so widely known by people outside the healthcare space. A public information campaign targeted at these third parties would be beneficial ...”
Additional issues arose in the informal interviews with respondents and researchers. Mentioned relatively often were concerns about tensions between Sec. 3221 and Part 2, gray areas in understanding the requirements and applications of these patient privacy laws, the tension between patient privacy rights and the integration of physical and behavioral healthcare, the possibility of patients exercising granular control of disclosure of their records (being able to specify what information could be disclosed to whom), and technological challenges such as interfacing efficiently with HIEs, which is not yet easy to do.
Opinions on Sec. 3221 were nearly evenly divided between positive and negative views, aligning with preferences for greater ease of integrating behavioral and physical care versus protecting the privacy rights of SUD patients as a means of facilitating their willingness to seek and remain in treatment.
Another large theme had to do with interpreting and applying Part 2, suggesting that hardships and gray zones were concerns for organizations. Some viewed Part 2 as adverse to care standards (e.g., coordination of care) or incongruent with technology, dated, needing granularity, and tending to be unenforced. As one informant stated, “We’re kind of small, and we don’t really have an IT department. So maybe we haven’t set things up quite right with our EHR to be able to do what it’s supposed to do … [The HIE is] figuring it out … by the time we get set up with the new electronic health record, hopefully they’ll have more of the glitches worked out…. You’re trying to take the lead from the higher ups and hopefully they’ll figure it out before we need it.”
Respondents sometimes mentioned the struggle to adhere to Part 2 confidentiality in the face of law enforcement efforts to obtain information about patients. As one commented: “… It’s very clear, in fact, the CARES Act just reinforced [Part 2] that [SUD] treatment is not supposed to be used in criminal cases … it’s getting treatment instead of incarceration, so they are trying to help coordinate the clients getting what they need. But at the same time they are law enforcement. So is it really coordination of care, and should they really be part of our team meetings and be getting updates regularly, and does the consent really cover that …?” This participant also states that while Sec. 3221 reinforces many aspects of Part 2, it does not add clarity to law enforcement disclosures. Another said, in regard to both Sec. 3221 and Part 2: “[With HIPAA,] people already know that you can’t do this … they call you first instead of just dropping a subpoena on you or showing up with a search warrant.”
Finally, we coded all of the respondents from the survey based on the groupings in Table 1 and ran a complex coding query (intersections). Because the results are most meaningful when the groups’ frequencies are comparable, we focused on the CEO group (top group in the table) versus the other C-suite group (the group immediately below the CEO group). Results of the coding query yielded no identifiable differences between those two groups. The themes are addressed similarly by both groups. Further analysis looked for whether subtopics of the themes showed any identifiable differences, but they did not. Still further analysis looked to see whether differences could be detected in comparison with the privacy and/or quality and the licensed counselor groups. Here, too, we found no differences in themes being discussed.
In summary, the diversity of opinions and level of planning by SUD organizations regarding Sec. 3221 suggest the impact will vary among organizations and reflect concern with different barriers and benefits.
By the time data collection began, less than six months after passage of Sec. 3221 of the CARES Act and long before implementing regulations will have been promulgated, most SUD treatment organizations were aware of the Act, discussing it at internal policy levels. A third of the organizations were planning concrete changes, and a fifth had already undertaken changes. The rest were discussing the implications of Sec. 3221 and waiting for more guidance before undertaking more concrete planning.
Informal interviews suggested that organizations were evenly divided on whether they had favorable views versus concerns about Sec. 3221. Representatives of most organizations viewed Sec. 3221’s support of patient-directed granular information sharing as positive, though such disclosures are often constrained based on the sophistication of provider segmentation technologies, as well as facility discretion. Because SUD organizations are a key stakeholder in implementation of technology to facilitate granular disclosure, those findings should interest the Office of the National Coordinator for Health Information Technology (ONC), a long-standing supporter of patient-directed granular consent.24,25
Implementation barriers identified by participants ranged from comprehension challenges to changing consent policies and forms, upgrading electronic health records, training staff on new processes, and navigating newly complicated relations with external entities. Generally, SUD organizations are anticipating the required changes in the form of SAMHSA regulations in the future but are seeking details that will empower them to plan and confidently implement changes under the new law.
Organizations overwhelmingly desire specific teaching tools, such as templates and examples, as well as trainings, webinars, and teaching materials detailing Sec. 3221 regulatory requirements. Due to comprehension challenges and operational implementation concerns, organizations have expressed the need for expert legal advice regarding interpretations in order to move forward.
Participants indicated that a high profile, broad community effort to integrate new requirements, in partnership with state Medicaid, would be beneficial to ensure efficient and effective adoption. Participants suggested that educational outreach for HIPAA business associates and other outside entities, such as law enforcement and contractors, would be particularly helpful. Such a coordinated effort would increase discussion and understanding of patient confidentiality processes and policy across entities working with SUD treatment organizations.26 As some study participants noted, ensuring all stakeholders are “on the same page” is a necessary step in clarifying expected external and internal processes for Sec. 3221.
Harmonizing the confidentiality of SUD treatment records with evolving state regulations was a concern for study participants. Regarding the state prescription drug monitoring program (PDMP), one participant specifically pointed out: “You know, reporting methadone—it’s never been done before, it’s like the sacred rule you know if there’s any substance abuse information, that’s private it’s the facts and evidence, it’s like a whole other level on top of CFR 42 and you know it’s not written in … it’s not something we’re rushing to do.”
Sec. 3221 promises to streamline the consent and disclosure process for SUD treatment records.27,28 Study participants feel, however, that unwritten community standards will persist and evolve, at times creating community norms that overlay what the law requires. Some organizations mention they do not anticipate modifications to their current privacy and disclosure processes: “Because we are a comprehensive agency, a lot of things are already in place that we don’t need to change, and even though it’s kind of loosening up in our favor, we aren’t necessarily going to change anything. We’re just going to rest a little easier, that’s probably the best way.” Some organizations maintain that keeping current processes, so long as they are more stringent than what the law requires, will be a less costly, less disruptive response that continues a high level of patient confidentiality, regardless of the flexibility provided by Sec. 3221: “We’re probably going to continue doing what we do. It’s already built into our system, so I don’t see that there would be additional cost to bear out from it.”
The survey and informal interview results highlight the complicated environment for SUD organizations as they juggle coordination of care, consent, patient rights, and the patchwork of existing laws to which Sec. 3221 is being added. Over a third cited the complexity of integrating Part 2 with Sec. 3221, namely the new relationships with external agencies, organizations, and contractors. The informal discussions particularly exposed hardships and ambiguities SUD organizations currently experience with Part 2 compliance and Sec. 3221’s apparent absence of remedies for known thorny issues. Campbell et al. observed that Sec. 3221 follows the pattern of earlier amendments to Part 2 by not addressing fundamental stakeholder dilemmas such as the tension between confidentiality and integrated care.29 In fact, the recent scoping review of the Part 2 literature reported a dearth of research on the impact of Part 2, particularly on patients, providers, and other key stakeholders.30 The conflict between patient rights, especially confidentiality, and coordination of care is well-documented.31-35 We are at the beginning of the Part 2 and Sec. 3221 harmonization journey.
While the sample of organizations was small, the method of analysis showed theme saturation was reached. Nearly all participants who failed to complete the survey stopped as soon as they were asked about their specific role in their organization’s Part 2 compliance. Those not directly involved in organizational policymaking regarding legal compliance, including with Sec. 3221, did not complete the survey. Most (85 percent) survey participants considered themselves knowledgeable or somewhat knowledgeable on the topic. Overall, this study’s response rate fell within expected parameters.36
This study took advantage of a rare opportunity to gain some understanding of how SUD organizations are approaching regulatory changes that will substantially affect their work but for which they do not yet have implementing regulations to guide them. Future studies are needed to analyze how organizations are implementing Sec. 3221 and how the process impacts patients and other stakeholders. Our findings may serve as a point of reference or a comparison for later studies and policymaking, as well as offer some insights for efforts to assist SUD organizations in navigating changed law.
The study reveals a spectrum of reactions by SUD organizations to the changes that will be wrought by Sec. 3221 and identifies a clear need for impact research engaging patients, providers, and other key stakeholders. Though these provisions seek to align standards for confidentiality of SUD treatment with HIPAA and general clinical workflows,37 Sec. 3221 seems to fall short of addressing key needs and concerns of SUD organizations and patients. As of this writing, the SUD community still awaits promulgation of the regulations to implement the Sec. 3221 changes. The new balance between confidentiality and coordination of care for those involved in SUD care is unclear and will inevitably develop over time. Future research would do well to assess the views of and impact on key stakeholders, and, particularly, patients.
This work was supported by the National Institute of Mental Health through My Data Choices, evaluation of effective consent strategies for patients with behavioral health conditions (R01 MH108992) grant.
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Julia Ivanova (email@example.com) is a PhD candidate at Arizona State University.
Michael Saks (Michael.Saks@asu.edu) is a regents professor at Arizona State University.
George Karway (George.Karway@asu.edu) is a PhD candidate at Arizona State University.
Anita Murcko (firstname.lastname@example.org) is a clinical associate professor at Arizona State University.
Candy Espino (email@example.com) is the president and CEO of the Arizona Council of Human Service Providers.
Chase Millea (firstname.lastname@example.org) is an associate at Snell & Wilmer.
Melissa Soliz (email@example.com) is a partner at Coppersmith Brockelman.
Adela Grando (firstname.lastname@example.org) is an associate professor at Arizona State University.