PositiveLinks

PositiveLinks is a mobile platform deployed by clinics or community-based organizations to connect people with HIV to a digital support community. The client-facing app helps people with a new diagnosis of HIV become engaged in care and helps people at risk of being lost to care overcome barriers related to geographic or social isolation. From the app, people can access Health Insurance Portability and Accountability Act of 1996 (HIPAA)-compliant patient dashboards, secure messaging, and patient lab records. The PositiveLinks platform was developed by and first implemented at the University of Virginia (UVA) Ryan White HIV Clinic in 2014. The UVA Ryan White HIV Clinic is based in a rural setting and serves 52 counties in the western half of Virginia. People who used PositiveLinks had increased rates of retention in care and viral suppression.

VA

Evidence-Based Intervention
Use of technology and mobile health
Retention in HIV medical care; Viral suppression
Treat
People with newly diagnosed HIV; People living in rural areas
RWHAP Part A; RWHAP Part B
Hospital or hospital-based clinic; Community health center, including Federally Qualified Health Centers (FQHCs)
Need Addressed

Despite the availability of effective treatment, many people with HIV continue to live with an unsuppressed HIV viral load due to lack of engagement in care. People living in rural areas have unique challenges accessing care due to barriers such as the geographic distance of medical providers, limited local resources, transportation issues, stigma associated with HIV, and social isolation.

“I think [for] our rural-based clinic that serves the western half of Virginia, 52 counties, this was a real opportunity to build community in a way that we hadn’t truly anticipated when we started this, but which has definitely exceeded our hopes and dreams.” 

Core Elements
Secure and accessible app

People access the PositiveLinks app by downloading it on their phone. Clients using the app must be approved and sign up through the clinic or community-based organization. When they sign up, clients select a username that protects their anonymity and allows them to decide how much personal information they share with other people using PositiveLinks. Limiting the member pool to clients at the clinic or community-based organization ensures an intentional community is built among clients at the site, and that staff are able to support and monitor their clients. Clients using the app can also take comfort in knowing that any information they share on message boards is being seen only by other individuals receiving care at the clinic

Features to promote community building

The app’s community message board provides social support and a sense of community for people with HIV. Clients can access message boards to start new conversations with other people using the app or respond to existing conversations. Staff at the clinic also intermittently introduce new conversation topics on HIV or general well-being into the message board to foster engagement, and use the message board to share clinic-specific announcements or relevant community events and news. This community building may help reduce feelings of social isolation for people using the app.

Features to promote engagement in care

PositiveLinks offers several features that can improve engagement in care. The site sends clients using the app tailored messages, including daily queries or check-ins, on stress, mood and medication adherence, weekly quizzes, and appointment reminders. Built-in educational resources include an orientation guide to the clinic, information on HIV and health, and stress reduction techniques. Clients using the app can choose to reply to these check-ins. Responses are recorded in a visual display that allows clients to reflect on the interactions of mood, stress, and adherence. One of the important benefits of PositiveLinks is it instills the development of key skills such as self-monitoring to support successful management of a chronic condition. While staff can view client responses, program staff emphasize that the responses entered by clients are primarily for their own review, not that of staff members. However, staff also have the opportunity to gain additional information about clients’ adherence to medication regimens as well as their overall health and stress levels, if desired. Clients and clinic staff can also review their upcoming appointments, though appointment scheduling is not available through the app. Additional features include secure direct messaging with care team members, secure document upload, and embedded telehealth.

Customizable app tailored to setting

As a fully customizable app, clinics and community-based organizations that implement PositiveLinks select features that are tailored to clients’ needs and context. When developing the PositiveLinks app, the team at the UVA Ryan White HIV Clinic identified features of the app that were needed and feasible for implementation at their site. In this way, PositiveLinks allows clinics and community-based organizations to manage the scale of their intervention and to tailor features to support their clients’ needs.

Outcomes

An intervention analysis was conducted using data collected before and after the implementation of PositiveLinks at the UVA Ryan White HIV Clinic. Seventy-seven participants were recruited from the clinic population, which serves 52 counties. Enrollment in the trial occurred between September 2013 and May 2015. Data from the time of enrollment (baseline), six months post intervention, and 12 months post intervention were collected for each participant. The evaluation showed that pairing clinic care coordination and PositiveLinks significantly improved engagement in care and clinical outcomes for people with HIV.

Category Information
Evaluation data
Data collected in the UVA Ryan White HIV Clinic electronic health record at baseline and at 12 months post-implementation
Measures  
  • Retention in care
  • Visit consistency (Defined as the proportion of four-month time intervals in which one visit with an HIV care provider was completed in a year)
  • Viral suppression
Results  
  • Retention in care increased from a baseline rate of 51% to 81%* 
  • Visit consistency increased from 22% to 51% post-implementation*
  • Viral suppression increased from 47% to 79% post-implementation*

*Statistically significant

Source: Dillingham R, Ingersoll K, Flickinger TE, et al. PositiveLinks: A mobile health intervention for retention in HIV care and clinical outcomes with 12-month follow-up. AIDS Patient Care and STDs. 2018; 32(6), 241–250. doi.org/10.1089/apc.2017.0303

Planning & Implementation
  • Clinics and community-based organizations interested in implementing PositiveLinks should assess organizational capacity to see if the site has the necessary staff and resources to maintain the intervention, and consider client interest in using the app. They should also consider service delivery gaps and health inequities within their community and client population to tailor the app to their client populations’ needs. For example, one clinic already had an established method of reminding clients of upcoming appointments, so they chose not to deploy that feature in PositiveLinks. Other sites might choose quiz questions relevant to issues in the community, such as transportation needs.
  • Sites need to meet with information technology (IT) staff to review the data security and compliance processes that accompany implementing a mobile-based platform. IT staff should consider how the mobile platform will integrate with electronic health records and which staff will be available to provide technical assistance and security support.

  • PositiveLinks uses strengths-based care management and motivational interviewing to produce positive results. Clinic staff were trained in key principles of both in addition to learning how to operate the PositiveLinks platform.

  • To help ensure a successful launch, clinics should recruit an initial cohort of clients to use the app, disseminate information about the program to stakeholders, and train clients on the platform. Staff should be on hand to provide support, as clients learn to use PositiveLinks.

  • Clinics should plan to collect data to monitor and evaluate the impact of PositiveLinks on the clinic community. This can include interviewing staff, clients using the app, and other stakeholders to collect their feedback, and comparing how clients using PositiveLinks were engaged in care compared to the general client population. 

  • Originally implemented in Charlottesville, VA, PositiveLinks has also been implemented with financial support from the Virginia Department of Health through the Ryan White HIV/AIDS Program Part B and technical assistance support from the Charlottesville team in: Fairfax, VA; Lynchburg, VA; Roanoke, VA; Richmond, VA; and Danville, VA. 

  • Implementations are also underway in Marion, IN; Atlanta, GA; Greenville, SC; Palm Beach, FL; and Hudson, NJ.

Sustainability
  • PositiveLinks cost the UVA site $1,285 per client each year. This unit cost included ongoing updates, maintenance, and security of the mobile platform by the UVA-development team. It also included the smartphones UVA provided to those who needed them, as well as smartphone service subsidies of up to $55 each month to those who met program requirements. Not all sites implementing PositiveLinks choose to provide phones and cell service.
  • The PositiveLinks intervention cost the UVA site an additional average personnel cost of $455 per client using the mobile platform. 
  • Public health authorities, including health departments, are valuable partners in securing funding for the administrative and technical costs associated with PositiveLinks. Blending funding streams may be the key to covering costs. 
  • Potential funding streams include state funds, AIDS Drug Assistance Program rebate dollars or program income, and partnering with Ending the HIV Epidemic in the U.S. recipients. Research funds may also be available to sites; such funding may be particularly valuable if local and state health departments cannot offer assistance.
Lessons Learned
  • Obtaining IT approval for PositiveLinks can be challenging. Sites can overcome this by preparing documentation and collaborating with in-house staff to gain IT security approval. PositiveLinks' secure messaging platform is HIPAA compliant, but sites can ease approval by documenting PositiveLinks’ HIPAA compliance in internal protocols and by encouraging clients to use secure passwords or encrypt their smartphones. Sites should consider the security level of existing computers and databases to ensure privacy is maintained. Some sites choose to provide clients with secure smartphones on which to use PositiveLinks
  • As a tech-based intervention, PositiveLinks can be costly to implement. Designating an internal team to identify and pursue funding streams can help alleviate these costs.  Demonstrating impact related to viral suppression and retention in care may also encourage buy-in.
  • PositiveLinks can be particularly valuable during crisis events, such as COVID-19, which prevent people from coming in person to the clinic. Investing in remote technology enables clients to stay in touch when unexpected circumstances arise. 
  • A PositiveLinks evaluation cited broadband availability and WiFi access as barriers to implementation; other barriers included cell phone availability and resources to support cell phone payments.1 
  • Clients may be reluctant to try PositiveLinks at first. Implementing a comprehensive stakeholder outreach plan that clearly communicates the value of PositiveLinks and addresses concerns about privacy and usage of the technology can help smooth the way for clients new to the app.
Contact
University of Virginia
Rebecca Dillingham, MD, MPH
PostiveLinks Director

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