Navigating Privacy and Security in Telemedicine for Primary Care

ABSTRACT

Objective: To examine patient and provider perspectives on privacy and security considerations in telemedicine during the COVID-19 pandemic.

Study Design: Qualitative study with patients and providers from primary care practices in 3 National Patient-Centered Clinical Research Network sites in New York, New York; North Carolina; and Florida.

Methods: Semistructured interviews were conducted, audio recorded, transcribed verbatim, and coded using an inductive process. Data related to privacy and information security were analyzed.

Results: Sixty-five patients and 21 providers participated. Patients and providers faced technology-related security concerns as well as difficulties ensuring privacy in the transformed shared space of telemedicine. Patients expressed increased comfort doing telemedicine from home but often did not like their providers to offer virtual visits from outside an office setting. Providers initially struggled to find secure and Health Insurance Portability and Accountability Act–compliant platforms and devices to host the software. Whereas some patients preferred familiar platforms such as FaceTime, others recognized potential security concerns. Audio-only encounters sometimes raised patient concerns that they would not be able to confirm the identity of the provider.

Conclusions: Telemedicine led to novel concerns about privacy because patients and providers were often at home or in public spaces, and they shared concerns about software and hardware security. In addition to technological safeguards, our study emphasizes the critical role of physical infrastructure in ensuring privacy and security. As telemedicine continues to evolve, it is important to address and mitigate concerns around privacy and security to ensure high-quality and safe delivery of care to patients in remote settings.

Am J Manag Care. 2024;30(Spec Issue No. 6):SP459-SP463. https://doi.org/10.37765/ajmc.2024.89553

Takeaway Points

Amid the swift uptake of telemedicine during the COVID-19 pandemic, our research underscores the emergent privacy and security considerations experienced by both providers and patients. This study’s findings accentuate not only the technological dimensions but also the crucial role of physical spaces in ensuring effective telehealth delivery.

• Telemedicine transforms traditional health care, creating 2 physical spaces (for the patient and provider) and a shared virtual space, each demanding privacy and security.
• Recommendations for evolving practices include securing dedicated devices for telemedicine, educating patients on the superiority of Health Insurance Portability and Accountability Act–compliant software compared with consumer technologies, ensuring both parties have access to private spaces, and reinforcing patient trust by conducting telemedicine in professional settings.
• Policy reforms should consider interventions that facilitate equitable access to telehealth services, ensuring that privacy concerns do not inadvertently exacerbate existing disparities in care access.

Health care providers and health care organizations are legally required to ensure privacy (to keep health information confidential and share it only with authorized individuals) and security (to prevent unauthorized access to data).¹ Early privacy and security legislation such as the Health Insurance Portability and Accountability Act of 1996 (HIPAA) was written at a time when almost all medical records were on paper and health care was delivered in offices or hospitals.¹ Even legislative updates passed to address the privacy of electronic health information continue to assume that health care is delivered in traditional in-person settings and may not fully address the novel challenges posed by telemedicine.²

The COVID-19 pandemic created an urgent need for remote health care. The Coronavirus Aid, Relief, and Economic Security (CARES) Act waived certain HIPAA requirements while expanding telemedicine coverage to allow, for example, patients and providers to receive and deliver telehealth services from their homes.^3-5 The Office for Civil Rights (OCR) within HHS also announced that it would not penalize health care providers for noncompliance with privacy and security regulations as long as they provided telemedicine in good faith.⁶

After enactment of the CARES Act, telemedicine use rose sharply, with 37% of US adults having used telemedicine in 2021.^5,7,8 However, when health care is delivered virtually, patients and providers are no longer in the physical spaces that were designed to protect personal and medical information. Additionally, technologies used for telemedicine may not prioritize privacy as highly as established health information technologies. Privacy concerns remain a barrier,^9-12 particularly among first-time telemedicine users.¹³ A recent survey also revealed that people of color were 2 to 3 times more likely than White participants to express concerns about health information security and privacy.^14,15

The aim of this research was to better understand how privacy issues affected patient and provider experiences during the telemedicine surge that followed the COVID-19 pandemic. We conducted this qualitative study to identify novel privacy and security concerns in the virtual space, the ways in which users adapted to it, and recommendations for future use of telemedicine.

METHODS

This study is part of a larger qualitative research project on experiences with telemedicine from 2020 through 2022 conducted across primary care practices in New York, New York (NYC); North Carolina (NC); and Florida (FL). Participants included adult patients with at least 1 chronic disease and primary care providers (PCPs) who were recruited via email through study flyers, patient registries, and snowball referrals. To ensure a comprehensive understanding of telemedicine experiences across different demographics, we conducted purposive sampling based on practice type, age, race and ethnicity, primary language, and insurance type. Our inductive analytic framework necessitated an approach to sampling that was flexible and responsive to the data as they emerged, rather than fixing the sample size in advance. As a result, we began with an estimated sample size of approximately 25 PCPs and 70 patients, with the understanding that this number would allow us to reach a range of perspectives. Researchers (K.A.M., J.J.L.) interviewed participants following semistructured interview guides (eAppendices A and B [available at ajmc.com]). Provider interviews were conducted in English, and patient interviews were conducted in English or Spanish. Three investigators (K.A., K.A.M., J.J.L.) developed the code key and coded transcribed interviews independently. Data were analyzed using a thematic content analysis approach¹⁶ with the support of Dedoose version 9.0.46 (Dedoose). Recruitment concluded when we achieved thematic saturation—a point at which additional interviews ceased to introduce new themes or concepts. This was determined through an iterative process of thematic content analysis.^17,18 To further validate our findings and ensure the robustness of our thematic analysis, stakeholder members reviewed the preliminary themes, acting as member checkers to ensure accurate interpretation of participant perspectives.¹⁶ For this article, we focused on themes related to privacy and security. More complete methods and additional results are published in companion articles.^19,20

RESULTS

Our study included 21 PCPs and 65 patients. Of the patients, 60% were female and 40% were male. Forty-two percent self-identified as White, 25% as Black, 23% as Hispanic, 9% as other, and 1% as Asian. Approximately half were aged 41 to 65 years, and 22% were older than 65 years. Two interviews were conducted in Spanish. Of the PCPs, 62% were female and 38% were male. Forty-eight percent self-identified as White, 24% as Asian, 14% as Hispanic, 9% as Black, and 5% as other. Patients and providers were divided evenly across the 3 sites.

We found 2 themes on privacy and security concerns in telemedicine: (1) navigating security and privacy in telemedicine: adoption of unfamiliar technologies and adjustments for familiar ones and (2) transformed shared space in telemedicine: the impact of a lack of private physical space.

Theme 1: Navigating Security and Privacy in Telemedicine—Adoption of Unfamiliar Technologies and Adjustments for Familiar Ones

Security concerns, specifically the need for secure and HIPAA-compliant platforms, emerged as a significant issue for both patients and providers. Providers spoke about their practices’ processes of finding a secure platform that met HIPAA requirements and was easy to use. At the beginning of the pandemic, “there was a waiver so that [providers] could use basically anything [they] wanted,” and the respondent’s practice “initially…got a gig with Zoom…but [Zoom] was not implemented with the [electronic health record]. And there was another caveat.… [The practice group] did not want our Zoom visits to run in the same network as the [electronic health record]” (provider 14; FL). There were also technical challenges with video platforms, as noted by another PCP (provider 17; NC): “…The video visit type that we used through Epic had a lot of glitches at the time, so we were all using Doximity.”

Additionally, providers who needed to find a device to host the software expressed novel concerns about their own privacy. One PCP (provider 14; FL) said, “We were told that we [needed] to use our personal devices to do the Zoom call off our phone data.” But, as noted by another PCP (provider 5; FL), “people didn’t want to use their own phone.” Another concern stressed by a different PCP (provider 14; FL) was that “you cannot hide your number, so now the patient has your cell phone number—and patients will start calling at different times for all reasons…. So I got an old iPad that I had, and I…opened a new Gmail account…that was only for this. I opened a new Apple ID and assigned it to the iPad. And I will do FaceTime on my iPad [that has] nothing personal in it.”

Whereas providers prioritized security for their telemedicine platforms, patients prioritized familiarity, and many may not have understood the privacy implications. Providers said that some patients preferred familiar platforms such as FaceTime. One PCP (provider 16; NC) noted: “I also had a lot of [older] patients who thought [the telemedicine platform] was FaceTime, so they would try to hit the video button. They’re like, ‘I don’t understand. It always works with my grandkids.’ I had to try to explain that it’s a different thing because it’s secure.…”

Despite a preference for familiar platforms, some patients also expressed concerns around the security of their virtual visits. One patient (patient 24; NC) said, “I think the first concern I had was just wondering [whether] the link or the feed could be hacked…but [my doctor] showed me they’re taking steps to ensure that it didn’t happen.” Another patient (patient 28; NC) who initially experienced security concerns said, “I kind of trust them to keep things secure, do the HIPAA.” However, some concerns remained, particularly for audio visits. “How does the doctor know it’s you, or could someone else steal your identity? How do you really verify it’s you?” asked one patient (patient 32; NC). Similarly, another patient (patient 43; NYC) stressed security when explaining a preference for video vs audio visits: “I can see who I’m talking to because, you know, with this technology, I could be talking to anybody.…”

In addition to discussing the importance of using secure devices and software platforms, both patients and providers emphasized the need for patient preparation as a key measure to ensure privacy in telemedicine. Providers spoke about systematic methods of asking patients about their privacy during visits. One PCP (provider 17; NC) said, “We set up templates…making sure the patient was in the state and [asking whether there was] anyone else in the room.” A patient (patient 29; NC) noted, “A lot of times [providers] ask things like, ‘Are you in an area where you can talk?’”

Theme 2: Transformed Shared Space in Telemedicine—Impact of a Lack of Private Physical Space

Unlike in-person care, virtual care did not come with a guarantee of private clinical space. One PCP (provider 15; FL) noted that some providers held telemedicine visits in their office and put “a sign [on their door] that [read], ‘Do not disturb—telemedicine in progress.’” Others with shared offices had to leave their office to find a designated space. The lack of privacy was compounded if providers conducted visits from their homes. One PCP (provider 17; NC) stated, “[Telemedicine’s] not like a sacred space of having a doctor’s appointment.”

Patients often had privacy concerns when they saw a provider working from home. “His office was [in his house], and we would talk about things [that were] personal,” said one patient (patient 43; NYC). “I didn’t want to share everything, you know?” Another (patient 11; NC) noted, “Just imagine you’re talking to your doctor, and they have a kid running around.… When something’s so sensitive and personal, you want—more than ever, you need—their attention to be on you and [to] have privacy.”

In addition, the privacy of the patient’s environment during telemedicine visits needed to be considered. Some patients suggested that using telemedicine in their own home increased their privacy compared with visiting a doctor’s office. “You’re in your own house. It feels a little more private,” said one patient (patient 27; NC). Others, however, faced challenges. One patient (patient 39; NYC) was required to attend a telemedicine visit with her teenage sons. “…[I’m] in the room with them, and they’re looking like they don’t want [me] to hear what they’re saying to the doctor. [But] the doctor is [saying] I have to do this and they’re looking like, ‘Get out,’ and [I’m] like, ‘I don’t want to be here.’”

Unlike in-person visits, virtual visits can make it difficult for providers to recognize the presence of additional people in the patient’s environment. One PCP (provider 8; NYC) said, “It’s been 20 minutes, and you hear an audience kind of gasping in the back. I’m like, ‘Oh, jeez…you were there all the time.’” Another PCP (provider 13; NYC) said, “I can’t control the risk of HIPAA violations.” Concerns about eavesdroppers were heightened when patients took virtual visits “in a supermarket” (provider 11; NYC) or “on the bus” (provider 13; NYC).

Patients and providers also discussed patients’ lack of private space worsening disparities. One PCP (provider 6; NYC) spoke about “patients who are living in homeless shelters and don’t have stable housing or patients who live in a house with others.… Patients sometimes don’t have privacy to have video visits at home.”

DISCUSSION

Privacy and information security are considered fundamental to health care. Telemedicine transforms traditional in-person health care, creating 3 spaces: 2 physical spaces (1 for the provider and 1 for the patient) and a shared virtual space. Ideally, privacy and security would be ensured in all 3 spaces through private physical spaces and secure platforms and software. Our study found that patients and providers faced technology-related challenges, such as finding secure devices and software, as well as difficulties ensuring privacy in the transformed shared space of telemedicine (Figure). Both patients and providers shared considerations and recommendations for improving privacy, such as increasing patient education on privacy.

At the onset of the pandemic, the OCR allowed for expanded use of applications such as Apple Inc’s FaceTime, Facebook Messenger video chat, Google Hangouts video, Zoom, or Skype.²¹ In our study, providers reported that some patients preferred these familiar social platforms. However, both patients and providers were apprehensive about the security of these platforms, and patients had concerns about their visits being hacked or being unable to securely confirm identity. Patients have relatively low confidence in social media and technology companies holding their data.²²

Although technological safeguards are important for securing health data, our study findings highlight the vital role of physical safeguards in protecting patient privacy. Both patients and providers must identify and have access to private physical spaces to conduct telehealth visits. This may not be easy or feasible. Some providers expressed challenges finding privacy in their homes when working remotely, and others struggled even in their offices. Additionally, providers reported that some patients had telemedicine visits while in public spaces or had family members off screen unbeknownst to providers. Conversely, patients often had privacy concerns about providers who conducted telemedicine visits from their home. Guidelines on the OCR’s website state that providers will call patients from private settings, such as their office or appointment room, but are ambiguous about whether providers can be in their homes.⁶ To ensure that virtual visits are as effective and private as in-person visits, it is essential to ensure that private spaces are available for both patients and providers, whether they are in homes or in medical settings.

Lack of private space is more common among patients with lower socioeconomic status who may be more likely to share dwellings or live in institutional settings. A recent study showed that housing insecurity can make it difficult to use telemedicine and that more than one-third of respondents reported that lack of privacy was a bigger barrier than technology.²³ The OCR instructs patients to inform providers if they cannot find a private space for a virtual visit.⁶ To address lack of privacy, providers can ask yes/no questions, leverage chat functions, and encourage patients to wear headphones.²⁴ It is important that practices and providers are aware of the limitations that lack of privacy can pose and of the increased responsibility that they have to help patients ensure continued access to care.

Our study findings add nuance to the growing literature on privacy and telemedicine^25-28 by highlighting new concerns around the physical spaces used to conduct telemedicine and the challenges of adapting commercial technologies, especially early on in the public health emergency when telemedicine was being rapidly expanded. In addition to existing recommendations on telemedicine,^29-32 our study findings suggest that providers should be given dedicated devices for telemedicine, that patients should be educated about the value of HIPAA-compliant software over more familiar consumer technologies, and that patients and providers should have access to private physical spaces. Also, we found that patients report feeling more secure when providers conduct telemedicine appointments from professional office spaces; to help alleviate some patient concerns about PCPs working from home, providers may be able to simulate professional settings with appropriate staging of their home offices. When a provider does use a home space, it is crucial to improve trust by addressing patient concerns and explaining the measures taken to protect privacy. Patients also should be explicitly asked whether anybody else is able to hear or see their telehealth visit and encouraged to use chat or headphones if they are not alone.

Limitations

Our study has several limitations. Even though patients and providers were recruited from different regions, our sample may not fully represent the broader population’s privacy concerns. It is also possible that patients who are most concerned with privacy may not have participated in a research study. We purposely recruited some participants without telemedicine experience, but most had at least 1 telemedicine encounter. Additionally, some findings, such as the challenges of managing telemedicine appointments with children at home, were specifically tied to the COVID-19 pandemic and may evolve as telemedicine systems and societal circumstances change. Therefore, our results, which provide valuable insight into telemedicine practices during the pandemic, may not fully reflect practices in a postpandemic context. Finally, themes about privacy and security concerns emerged from the interviews as conducted; we did not include questions or probes about these issues in the interview guide to systematically address them.

CONCLUSIONS

Telemedicine creates new privacy and information concerns recognized by both providers and patients. These include concerns about software and devices and about lack of private space for patients and providers. The COVID-19 pandemic led to telemedicine adoption by providers and patients who had never used it before and revealed that new processes are needed to ensure providers have secure devices and private physical spaces, to address patients’ privacy concerns, to help patients identify a private space or at least disclose that others can hear the visit, and to adopt a secure platform. Addressing these technology and space concerns will ensure that privacy concerns do not become a barrier that prevents some patients from using telemedicine.

Acknowledgments

The authors thank the members of the telehealth stakeholder board from the overall project, “Evaluating the Comparative Effectiveness of Telemedicine in Primary Care: Learning from the COVID-19 Pandemic,” and those they interviewed for their expertise and time.

Author Affiliations: Department of Population Health, New York University Grossman School of Medicine (KA), New York, NY; Department of Population Health Sciences, Weill Cornell Medicine (KA, RK), New York, NY; Division of General Internal Medicine (KAM, JJL, CRH) and Institute for Health Equity Research (CRH), Icahn School of Medicine at Mount Sinai, New York, NY; Department of Psychology, Pace University (KAM), New York, NY; Department of Health Science, The University of Alabama (RM), Tuscaloosa, AL; now with University of Florida (RM), Gainesville, FL; Department of Biomedical Informatics, Vanderbilt University Medical Center (JSA), Nashville, TN.

Source of Funding: This work was funded by the Patient-Centered Outcomes Research Institute grant COVID-2020C2-10791 (Ancker and Kaushal, multiple principal investigators). The statements in this work are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute, its Board of Governors, or its Methodology Committee.

Author Disclosures: The authors report no relationship or financial interest with any entity that would pose a conflict of interest with the subject matter of this article.

Authorship Information: Concept and design (KA, JJL, RM, CRH, RK, JSA); acquisition of data (KA, KAM, JJL, RK); analysis and interpretation of data (KA, KAM, JJL, RM, CRH, JSA); drafting of the manuscript (KA, JJL); critical revision of the manuscript for important intellectual content (KA, KAM, JJL, RM, CRH, RK, JSA); statistical analysis (JJL); provision of patients or study materials (CRH); obtaining funding (CRH, JSA); administrative, technical, or logistic support (KA, KAM); and supervision (JJL, JSA).

Address Correspondence to: Katerina Andreadis, MS, Department of Population Health, New York University Grossman School of Medicine, 180 Madison Ave, New York, NY 10016. Email: katerina.andreadis@nyulangone.org.

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