PositiveLinks and the COVID-19 Response: Importance of Low-Barrier Messaging for PLWH in Non-urban Virginia in a Crisis

The first known case of COVID-19 (coronavirus disease 2019, henceforth “COVID”) in the Commonwealth of Virginia was announced on March 7, 2020 [1]. When the World Health Organization declared COVID a pandemic on March 11, Virginia Governor Ralph Northam declared a State of Emergency for the Commonwealth [1]. The first case of COVID in Charlottesville was reported on March 16, and non-urgent ambulatory visits at the University of Virginia (UVA) Health System were cancelled in favor of telemedicine services [2]. Issued on March 23, Executive Order 53 closed certain non-essential businesses, limited gathering size, and closed K-12 schools; on March 30, Executive Order 55 instituted a state-wide Stay-At-Home Order in effect until June 10, 2020 [3, 4]. During this time, the patient population at the UVA Ryan White Clinic experienced significant life changes.

People living with HIV (PLWH) need consistent medical care. Medication adherence and engagement in care are associated with improved clinical outcomes [5]. PLWH face many challenges that can put them at risk for gaps in care, including socioeconomic barriers. PositiveLinks (PL) is a mobile health (mHealth) intervention that provides a platform to deliver evidence-based practices for linkage to and engagement in care to PLWH in Virginia [5]. PL has been offered as usual care at the University of Virginia Ryan White clinic since 2017. Our PL coordinator and staff continuously monitor PL use by its “members,” tailoring the intervention through ongoing quality improvement efforts to better meet patients' needs.

The PL platform includes daily queries related to medication adherence, mood, and stress to encourage self-monitoring; a community message board for secure, anonymous communication with other clinic-connected PLWH; and a secure method for hosting telemedicine appointments with members. PL further provides a unique form of secure messaging, a feature highly favored by all PL users—especially those at greatest risk for disengagement from care [6]. PL members can exchange secure messages through the app with their providers and PL administrators. PL providers include physicians, nurse practitioners, social workers, case managers, psychologists, pharmacists, and others, reflecting our team approach to care delivery. The PL administrators are primarily responsible for app and phone functioning concerns; they do not participate in medical care delivery.

Secure messaging between patients and their healthcare providers is increasingly prevalent and can improve the management of chronic medical conditions [7]. Our prior work indicates that PL reaches a vulnerable population with a high prevalence of low literacy, low socioeconomic status, and racial/ethnic minority status [8]. These patient populations also tend to have low uptake of traditional electronic medical record systems’ patient portals and are at greater risk for adverse health events related to the COVID-19 pandemic [9, 10].

With the arrival of novel coronavirus to the United States, many medical appointments were canceled or delayed; COVID disrupted in-person health care. Telemedicine appointments were initiated and rapidly increased to bring care to patients in their homes [2, 11]. During this time, the PL members at the UVA Ryan White Clinic continued using the PL app, messaging their providers and administrators. While technology offered opportunities to maintain connections to care in a time of disruption, it was unknown how messaging would be used in unprecedented circumstances. The objectives of this quality improvement project were (1) to evaluate the rates of secure messaging by members, providers, and administrators and (2) to investigate the content and function of the messages exchanged through the PL platform in the early COVID-19 pandemic.

This mixed-methods analysis utilized quantitative methods to compare messaging rates between “pre-COVID” and “early COVID” time periods, then employed qualitative methods to investigate differences in messaging content between patients (“members”) and their Ryan White care team across the “pre-COVID” and “early COVID” time periods. This evaluation of a program offered as usual care at the clinic using de-identified data was determined by our Institutional Review Board (IRB) to be a quality improvement project and therefore not subject to full committee review.

Utilizing both quantitative and qualitative methods, we evaluated secure messaging in our mHealth app, PositiveLinks, before and after the arrival of COVID-19 in Virginia, finding marked increases in messaging overall and COVID-specific care coordination. This quality improvement project underscored the importance of low-barrier messaging to enable PLWH in a time of crisis.

Between "Pre-COVID" and "early COVID" periods in 2020, we observed a significant increase in member-sent messaging rates, specifically identifying that more messages were delivered to providers (care team members) as opposed to administrators who support phone service and app functioning. By contrast, we observed an overall decrease in member posting on the community message board. Our findings suggest that connection specifically with the care team was of increasing importance to our patients, especially after we entered the COVID-19 pandemic. We further identified significantly increased utilization of secure messaging by PL providers to provide outreach to PLWH, showing that secure in-app messaging enables providers to connect with patients. Having found increased messaging rates among members and providers, we then examined the content of a subset of exchanged messages to understand better what role in-app messaging served during this critical period. The PL messaging feature was used to address medical and social topics as well as app-related issues. For comparison, our prior analysis of PL messages sent November 2017–January 2018 were categorized as 57.6% app-related, 34.3% medical, and 12.4% social [12]. By contrast, our qualitative 2020 dataset contained more medical (53.3%) and social (21.3%) messages and fewer app-related messages (30.0%). Improvements in technology literacy (including mobile device and mobile app use) as well as PL app improvements may have contributed to the observed trend. For COVID-related messages, the most frequent subtype among all users was care coordination. These messages helped members navigate disruptions in their appointments, set up telemedicine consultations, maintain access to their medications, and remain connected with their providers. Our secure, low-barrier messaging permitted the clinical team to maintain connections with patients through the uncertainty and difficulties posed by the arrival of COVID-19 to Virginia.

Messaging was also used to address the social impact of COVID-19, such as problems with work, housing, or food access. By communicating these issues to the Ryan White care team, our patients were able to receive various resources addressing social determinants of health, including food/grocery cards, utilities assistance, and housing support [13] The secure, low barrier messaging enabled our team to quickly address developing issues, lessening COVID-induced and COVID-exacerbated barriers to care.

PL messaging served a role in communicating key public health information regarding the COVID-19 pandemic. Almost a quarter (22%) of COVID-related messages were related to precautionary measures, including hand-washing, mask wearing, and social distancing. This occurred during a time in which precautionary recommendations were frequently being revised, and the public may have been receiving conflicting information from various sources. Low-barrier messaging with health providers during the initial outbreak of COVID-19 provided patients with reliable, updated knowledge on key public health preventative measures to slow viral spread.

We also noted members reporting rising emotional and mental health needs through the COVID period. These needs were addressed through PositiveLinks messaging either directly by mental health clinicians who are PL providers or through coordination of local mental health resources for members. Here again, the secure, low barrier messaging provided an additional avenue for delivering valuable healthcare resources to our patients during the pandemic, further promoting engagement with care and lessening the effect of barriers to in-person care.

Investigating messaging function enabled us to identify if messaging was merely utilitarian or served a more personal purpose. We observed that most messages exchanged information, but half also featured rapport building. Of note, the rapport was often reciprocal, with patients not only receiving rapport from providers but also expressing concern for providers' wellbeing and appreciation for the care team. For comparison, our prior analysis of PL messages sent November 2017–January 2018 were categorized as information exchange (87.3%) and rapport-building (33.8%) [12]. Overall, there was more rapport-building (41%) in 2020 and, notably, the COVID-related messages demonstrated more rapport-building (50%) than seen in the earlier 2020 dataset. Rapport may be particularly important when in-person relationships are disrupted, and electronic communication becomes the primary means through which patient-provider connections can be maintained. In times of uncertainty and distress, rapport building can address patient needs for emotional connection [14]. In addition to patient distress, the COVID-19 pandemic has contributed to worsening burnout and adverse mental health for clinicians [15, 16]. Improved quality of in-person patient-clinician communication has been associated with reduced clinician burnout [17]. If this extends to electronic communication, rapport building through messaging may be of benefit both to patients and their care team and presents an area for future study.

Finally, we observed that conversations across the studied period were often initiated by PL members themselves, whether to organize appointments, to seek information regarding COVID-19, to communicate needs, or to build rapport. Occasionally, messages expressed negative sentiments or apologies to the care team; in other instances, patients took charge to direct their care goals. Electronic health records (EHRs) may provide an option for patients to take initiative to interact with care team members. However, in a review of studies examining uptake and use of EHRs by PLWH, low uptake of EHRs was noted due to poor technology access, lower technological literacy, and privacy concerns [18]. By contrast, the secure, low-barrier messaging feature in PL was regularly employed by patients to seek and participate more fully in care, forging or repairing relationships with their care team. Patients elected to utilize in-app PL messaging for self-advocacy and empowerment in the time of COVID-19, similar to observations in our prior work [6, 12].

The findings of this quality improvement project were used in the clinic to optimize the PL messaging function during the early COVID-19 pandemic to meet the needs of patients and the care team. The uptake of messaging for care coordination facilitated the scheduling and logistics of telehealth appointments to maintain continuity of care. We started sharing secure links for telehealth appointments through PL messages and adjusted integration so that audio and video could be turned on automatically, thus reducing technology barriers. The process for eligibility documentation was also refined so that the messaging could be used to keep members informed about which documents they needed and a direct contact person to assist them. A new cohort notification feature was added to allow messages from the clinic to be transmitted to all PL users, which would display on their app home page instead of their inbox, so that important information could be shared effectively, such as COVID-related announcements, updates, or clinic events.

PositiveLinks, developed with our patients and continually iterated over time in response to patient input, is adapted to low literacy and intentionally designed to be accessible to patients, including those with lower economic and educational attainment and/or members of minority racial/ethnic groups [5]. For these patients, barriers to communication with their health care team may not be alleviated by commercially available health system portals [9, 18]. PL patients and providers used in-app secure messaging to reach out to one another. They identified needs, organized receipt of healthcare resources, and perhaps strengthened patient-care team relationships. Patients took initiative to direct their care goals, in part utilizing messaging for self-advocacy and empowerment. Overall, there is a growing body of literature which underscores the importance of low-barrier messaging during a crisis, as seen in veteran and young adult populations with mental health concerns [19, 20], and our work contributes to this literature for PLWH.