Summary of "Privacy and confidentiality practices in adolescent family planning care at federally qualified health centers," Tishra Beeson et al., Perspectives on Sexual and Reproductive Health, Feb. 17, 2016.
Federally qualified health centers (FQHCs) offer voluntary family planning services and other primary care "to patients who are low-income or otherwise medically underserved, including nearly three million youth aged 12-18," according to Tishra Beeson, an assistant professor at Central Washington University's Department of Health, Educational Administration and Movement Studies, and colleagues.
However, the researchers noted that "[a]dolescents may face considerable challenges when accessing family planning services in FQHCs and other clinical settings," including "the ability to access services in a private and confidential manner." The researchers wrote that while ensuring confidentiality "is chief among critical efforts that would likely improve adolescent utilization of preventive health services, including family planning," there are several barriers that might "prevent FQHCs and other family planning providers from implementing certain privacy or confidentiality practices." Such barriers include state restrictions on minors' consent to such services and health care providers' confusion or uncertainty about providing confidential care to adolescents, among other factors, according to the researchers.
The researchers noted that while FQHCs are required to "offer voluntary family planning," federal law does not "define the services or organizational practices that are necessary to deliver such care; nor does it explicitly require confidentiality for all services provided." Instead, FQHCs follow state parental notification and consent laws. The researchers added that while the Title X family planning program "offers specific guidance for adolescent services and confidentiality practices, along with federal statutory requirements to ensure confidentiality for all patients regardless of state law," few FQHCs participate in the program.
Noting that FQHCs' "differing standards ... suggest that considerable variation and confusion may exist in the way organizations provide private and confidential services," the researchers conducted the study to "examine the measures that FQHCs take to ensure privacy and confidentiality in family planning services for adolescents," as well as the "barriers to and facilitators of" such services.
Methods
For the study, the researchers examined data from a large 2011 study of family planning services offered at FQHCs. The original study included a nationwide survey and six case studies.
Quantitative data
The researchers collected quantitative information from a survey distributed to the CEOs and CMOs at 958 FQHCs and from the Health Resources and Services Administration's Uniform Data System, which provided 2011 data on patient volumes, the number of adolescent patients and total clinical staffing at the FQHCs.
Survey respondents were asked to identify which of five practices they used to ensure privacy and confidentiality, including:
- Informing adolescent patients about their "right to confidential sexual and reproductive health care";
- Limiting access to records only to the patient and any "formally designated individuals";
- Keeping separate medical records for adolescents' family planning and sexual health services;
- Using security tools on electronic health records (EHRs) to prevent inappropriate access to information; and
- Using different contact information to discuss family planning services with a patient.
The researchers also collected data on FQHCs' characteristics, including organization size, Title X funding status and location information. Further, the researchers determined "state policy climate" by examining whether policies related to family planning for adolescents were in place by 2010, before the Affordable Care Act was implemented, and evaluating any such policies. Categories used in the assessment of state policies include access to and funding for contraceptive services for minors, restrictions on state family planning funds and state policies governing sexuality education programs.
Qualitative data
The six case studies were conducted to determine the context in which family planning services were delivered. Researchers conducted on-site interviews to determine:
- Patient population characteristics;
- Family planning services accessibility;
- Scope of family planning services;
- Structure and delivery of such services;
- Care coordination and referral networks; and
- Funding for family planning.
Results
Quantitative findings
According to the researchers, 423 FQHCs (44 percent) responded to the survey. The responding organizations treated more than 1.25 million adolescents in 2011, accounting for 14 percent of their total patient volume that year. Of those patients, 56 percent were female and 44 percent were male.
The researchers found that participating FQHCs "represented more than 1,900 primary care sites delivering family planning services." Overall, participating FQHCs had "a total of 425 [ob-gyn] full-time equivalents and 263 certified nurse-midwife full-time equivalents," while 26 percent employed onsite family planning educators.
In other findings on FQHCs, the researchers found that:
- 29 percent of participating FQHCs said they received Title X funding;
- 34 percent said they were small organizations, 29 percent said they were medium-sized and 37 percent said they were large;
- 44 percent "were located in a state with a favorable policy climate," 25 percent were located in a state with a neutral policy climate and 31 percent were located in a state with an unfavorable policy environment; and
- 51 percent said "their largest primary care site was in an urban location, while 37% were in rural areas and 10% in suburban locations; 2% of respondents did not report their geographic location."
Privacy and confidentiality practices
While "FQHCs reported using a variety of mechanisms to ensure the privacy and confidentiality of adolescents' family planning care ... there was substantial variation in the range of these practices," the researchers wrote.
Among FQHCs that reported on their privacy strategies, 93 percent said they used at least one method described in the study, 59 percent reported using at least three and 5 percent said they used all five practices. Specifically, the researchers found that:
- 81 percent of participating FQHCs said they provided adolescents with information about their right to confidentiality;
- 84 percent said they limited access to records only to the patient and formally designated individuals;
- 50 percent said they used different contact information to discuss family planning services with a patient;
- 43 percent said they used security tools on EHRs to block unauthorized access; and
- 10 percent said they maintained separate records for family planning and reproductive health.
According to the study, "FQHCs with Title X funding were significantly more likely than others to employ four of the five practices included in the index."
The researchers "observed few other differences in individual privacy and confidentiality practices by organizational characteristics." For example, "FQHCs appeared to adopt similar privacy and confidentiality practices regardless of size," the researchers wrote. However, they noted that a "lower proportion of urban or suburban than of rural FQHCs reported limiting access to family planning medical records to the patient or a designated individual (83% vs. 95%)." In addition, according to the researchers, "[t]he proportion of FQHCs that provided written or verbal information on adolescents' rights to confidential family planning services was higher in states with favorable or neutral policy climates (85%) than in states with unfavorable policy climates (73%)."
In a separate analysis, the researchers found that "Title X funding was positively associated with FQHCs' privacy and confidentiality index score" and that "large FQHCs employed more privacy and confidentiality practices than small organizations."
Qualitative findings
The researchers noted that the six "case studies support [the quantitative] findings and provide important context on the challenges FQHCs face as they try to provide adolescent family planning care."
According to the researchers, participants in all six reviews "emphasized the need for special programs for adolescents, but noted that the biggest challenge was in providing confidential care for this population." The researchers wrote, "Much of this concern appeared to center on two issues: FQHC staff's lack of clarity regarding state minor consent policies and the absence of confidentiality protocols, even for general family planning services."
The researchers found that the "case studies also revealed differences between Title X-funded clinics' and other clinics' understanding of whether and how to protect teenagers' confidentiality and the strategies used to ensure confidential care for this population." Specifically, a "lack of clarity among center staff [about state consent requirements] was seen in all case study sites that did not receive Title X funding," the researchers noted, adding that such confusion "is likely an impediment to ensuring private and confidential care." Employees at FQHCs that did not receive Title X funding "noted that possible conflict with parents may arise when there is a lack of protocols to protect adolescents' privacy and confidentiality," according to the researchers.
In comparison, employees at Title X-funded centers "were much clearer on confidentiality requirements for adolescents because the guidelines that regulate Title X funding explicitly ensure confidential care for adolescents regardless of state policies," the researchers wrote. They noted that staff at such centers "are trained to understand the explicit protections of those regulations" and that confidentiality protocols at such sites "are hardwired into their [EHR] system so that both staff and providers are aware when confidential services are needed."
However, according to the researchers, FQHCs with Title X funding and without Title X funding "noted that their adolescent populations appear not to be aware of confidentiality practices at their health centers and that outreach to this population is lacking."
The researchers noted that "FQHCs also reported the challenges raised when teenagers request separate billing for family planning services to maintain confidentiality." For example, most FQHCs without Title X funding faced multiple billing complications when they "tr[ied] to accommodate teenagers' requests to waive fees or not to use their parents' insurance," the researchers wrote. In contrast, "Title X funding appeared to be a safeguard for adolescent family planning, ensuring that adolescents could get confidential services at minimal or no charge."
The researchers wrote, "Ultimately, varying interpretations of how confidentiality is represented in both clinical service delivery and payment issues appeared to be present in nearly all case study sites, regardless of whether they receive Title X funding or not."
Discussion
"FQHCs play a vital role in providing family planning services to teenagers and young adults," the researchers wrote, adding, "Protecting privacy and confidentiality is therefore critical to ensuring that underserved adolescents can get this care without substantial barriers."
The researchers explained that the complexity of parental consent laws, in addition to the lack of protocols ensuring adolescent confidentiality, "appears to be undermining FQHCs' ability to implement confidentiality practices." According to the researchers, "The case studies suggest that additional provisions, such as [EHR] protections and administrative processes that allow teenagers to bypass their parents' insurance and waive copays, are critical to providing confidential care without creating more barriers to these services." The researchers also voiced concerns about "explanations of benefits that may be sent to parents whose private health insurance is charged for an adolescent's visit," particularly as "more low-income individuals and families gain or maintain coverage under ACA expansions."
The study also found that while certain measures, such as Title X funding and the size of an FQHC, "were associated with FQHCs' use of practices that protect adolescent privacy and confidentiality, others (notably state policy environment, as defined here) were not." The researchers noted that the "findings suggest that other resource- and program-level characteristics are associated with how well equipped FQHCs are to implement these practices." Overall, "the case study findings support the notion that confusion about state and federal requirements for adolescent confidentiality exists within FQHC organizations, which may further complicate the delivery of confidential services," the researchers wrote. They stated, "The absence of established protocols that help providers maintain confidentiality within the possible confines of state laws may unduly compromise adolescents' privacy."
Although "[c]onfidentiality of services remains a critical priority for the reproductive health field, particularly among adolescents," current federal guidelines on family planning policy and funding provide insufficient guidance for FQHCs, the researchers continued. They suggested that the Health Resources and Services Administration, which oversees FQHCs, develop guidelines that adapt existing recommendations of confidential care for adolescents for FQHCs, "specifically addressing what measures FQHCs should take to protect adolescent privacy and confidentiality." Similar to how the Title X guidance helps to "clarify responsibilities and establish standards for program grantees, these guidelines would clarify legal responsibilities and establish standards for all FQHCs," the researchers wrote.
"With this context in mind, FQHCs have a tremendous opportunity to develop and implement efforts to ensure the confidentiality of family planning services to better serve their teenage patients," they wrote, concluding, "Establishing clearly defined protocols and incorporating specific privacy measures into administrative and clinical processes are important steps that can be taken to achieve this goal."
