Advancing Access to Care through Digital Health: Perspectives from Youth on a Novel Platform to Increase Access to Sexual and Reproductive Health Care and Education for Adolescents and Young Adults

Abstract

Study Objective:

Youth account for half of new sexually transmitted infections (STIs) in the United States annually. Barriers to STI prevention include a lack of accurate sexual and reproductive health (SRH) education and low STI testing. We sought to obtain youth feedback on a digital health platform prototype designed to address these barriers.

Methods:

The platform prototype included SRH content, free STI testing and treatment, and anonymous question submission. Five focus group discussions, each lasting 45-60 minutes with 5-6 youth living in a high-prevalence STI region (Baltimore, Maryland), were conducted. Thematic analysis was conducted.

Results:

There were 28 participants with a mean age of 15.9 years (range 14-19), among whom 89% self-identified as female, 57% Black/African American, 29% Asian American, 14% White, and 7% Hispanic/Latino. Youth felt that the prototype platform was comprehensive and understandable. They suggested adding peer reviews to increase trustworthiness.

Conclusion:

Youth reported that the platform (violetproject.org) was an acceptable tool for SRH education and STI testing. Participants expressed enthusiasm and willingness to use the platform as a reliable SRH educational tool to combat medical misinformation on the Internet and a non-clinic-based source of STI testing. This platform could fill gaps in access to SRH care and education for youth.

Introduction

Youth bear the highest burden of sexually transmitted infections (STIs) in the United States, with 2021 rates at an all-time high.¹ Those under the age of 25 account for half of all new cases of STIs in the United States annually.¹ The Centers for Disease Control and Prevention recommends several major strategies to prevent STIs, 2 of which are risk assessment and education and screening of asymptomatic high-risk individuals to prevent transmission to others.² However, there are numerous barriers to implementing these strategies among youth.

First, youth education about sexual and reproductive health (SRH) is suboptimal. In a nationally representative sample, from 2015 to 2019, only half of youth reported receiving any form of reproductive health education in school.³ Also, youth commonly report receiving SRH education from unreliable sources such as friends, online search engines, social media, or television.⁴ SRH education may not happen during clinical encounters, either, as some clinicians may not talk to adolescents about SRH, especially when parents are present.⁵ A recent national study found that fewer than a third of adolescents reported receiving SRH information at a routine or preventive care visit.⁵

A second STI prevention strategy involves STI screening; however, youth are tested for STIs at far lower rates than older individuals.⁶ For example, a national survey of youth found that only 16.6% of sexually experienced females and 6.6% of males had been tested for an STI in the previous 12 months.⁷ Reasons for inadequate testing include a lack of privacy and confidentiality, lack of transportation, and stigma from peers and health care workers.⁷ Additionally, youth may struggle with knowing where, when, and how to get tested.⁸ STI screening is especially important given that nearly a third of a nationally representative sample of adolescents reported engaging in sexual intercourse, but the prevalence of condom use was only 54%.⁹ Addressing access to STI testing and treatment is of paramount importance in regions with high STI rates and high youth STI rates, such as Baltimore City, Maryland. As of 2019, Baltimore City had the second highest rate of STIs in the United States, with rates continuing to rise.¹⁰ In 2018, youth represented 16% of the city’s population but accounted for 60% of chlamydia, 41% of gonorrhea, and 16% of syphilis cases.¹¹

Evidenced-based strategies to address these barriers among youth exist; however, many are resource-intensive and developed before the widespread use of the Internet.¹² Youth are increasingly seeking sexual health information online, and nearly all adolescents now have smartphones with access to the Internet.^13–15 Despite the existence of several Internet-based resources, none currently offers a comprehensive package of direct-to-consumer SRH education and STI testing explicitly designed to address the unique needs of youth and low-literacy populations. To address this gap, we aimed to create a novel online resource geared toward youth. Our platform sets itself apart by offering easily understandable and trustworthy educational content, complimentary STI testing and treatment services, and a safe space for anonymous inquiries about SRH concerns.

Methods

A digital SRH prototype called “The Violet Project” was created by board-certified physicians and medical trainees. The prototype was accessible by any electronic device (eg, mobile phone, tablet, desktop) and was completely free to access. The prototype contained 3 main features: 1) SRH content (Fig. 1a), 2) free STI testing and treatment (Fig. 1b), and 3) a column to submit anonymous questions (Fig. 1c). Feature 1, SRH content, was created using a literature review of SRH topics important to adolescent behavior and development. The content was intentionally comprehensive, ranging from clinical topics such as STI and pregnancy prevention to healthy relationships, guides on talking to trusted adults about sex, and gender and sexuality identities (Fig. 2). The SRH content was topically organized into 17 pages for ease of reading, and each page contained illustrations, interactive buttons, and animated videos. Feature 2, the free STI testing and treatment section, was developed based on key youth desires for STI testing (eg, cost, privacy, confidentiality). Youth living in Maryland were able to order a free STI test kit (for chlamydia, gonorrhea, and trich) via an online form. Youth had to input a shipping address and demographic characteristics (eg, date of birth, race, ethnicity, sex, gender) and select the sites they wanted to swab (eg, throat, vagina, penis, anus). The kit and prototype website contained all relevant information, and anyone who tested positive was linked to care and given treatment. They were offered a free video visit or in-person appointment with a physician and given a medication prescription or medication itself, as well as offered treatment for their sexual partner, as expedited partner therapy. Additional information presented on the prototype website for feature 2 was guided by the health behavior model. The health behavior model was selected to promote health-care-seeking behavior by presenting information on the immediate and long-term risks of STIs, the likelihood of contracting an STI, and the ease of testing for and receiving treatment for STIs.

Fig. 1.

Three features of the digital health platform.

Fig. 2.

Sexual and reproductive health information covered by the platform. (For interpretation of the references to color in this figure legend, the reader is referred to the web version of this article.)

Next, adolescents and young adults were recruited from public high schools and community colleges in Baltimore, Maryland, for semi-structured focus group discussions (FGDs). Participants were given access to the prototype a month in advance and instructed to review the site before the FGDs were conducted. Five FGDs were conducted with 5-6 participants each, virtually over an audiovisual platform (Zoom Video Communications, San Jose, CA) and lasted 45-60 minutes. FGDs were not stratified by age, gender, or school. Each FGD was led by a trained facilitator. Participants gave informed written consent and were given monetary compensation for their participation.

The FGDs collected data about what type of SRH information the youth desired and modes through which they had received SRH information previously. Then, researchers elicited opinions about the prototype digital health platform. FGDs were audio recorded and transcribed verbatim. Transcripts were analyzed in NVivo (QSR International) by four investigators. Investigators coded one transcript and discussed emerging themes. The investigators coded data from each FGD thematically using inductive thematic analysis with a quality check for consistency between coders. Discrepancies were discussed to consensus. Investigators met to discuss and review themes from consolidated memos and identified salient subthemes and representative quotes. The methods were performed in accordance with relevant guidelines and regulations and approved by the Johns Hopkins School of Medicine’s Institutional Review Board.

A brief scale was administered comparing comfort using online resources vs violetproject.org.

Results

FGD participants included 28 adolescents and young adults, ages 14-19 years old (mean 15.9, standard deviation 1.1). Of the participants, 25 (89.3%) identified as female and 3 (10.7%) as nonbinary. Of participants, 16 (57.1%) self-identified as Black/African American, 8 (28.6%) as Asian American, 2 (14.3%) as White, and 2 (7.1%) as Hispanic/Latino. Participants attended 8 high schools and community colleges.

Three domains emerged: the need for a reliable source of SRH information (Table 1), positive feedback about the prototype digital health platform presented (Table 2), and suggestions to improve the digital health platform (Table 3). Domain 2, positive feedback about the prototype platform, included 6 subtopics: The platform was understandable and engaging, the videos facilitated comprehension, the information presented on the platform was comprehensive, youth favored the STI testing feature, youth appreciated the anonymity and reliability of the anonymous ask feature, and youth expressed a likelihood of sharing the platform with peers. Suggestions to improve the digital health platform included adding peer reviews of the website to increase trust in the platform and adding alternative viewing options for the platform and platform videos to maintain privacy. Lastly, participants reported feeling more comfortable and assured of accuracy using the prototype platform to answer their questions about SRH, as opposed to social media sites (eg, Facebook, Twitter) and personal sources (eg, peers, parents, friends).

Table 1.

Representative Quotes of Domain 1: Need for a Reliable Source of Sexual and Reproductive Health Information

Subtopic	Quote
Teachers do not have the capacity or training to teach the material in school	“I feel like she didn’t know that much. As a straight white woman, she just didn’t. Which is part of the problem.” “Wow. Because [the teacher who was supposed to teach sex ed] said he thought it was going to be uncomfortable.”
Lack of a sexual health curriculum in school	“I don’t think I have received sex ed in school at all.” “I don’t think we had to have health.”
Curiosity about sexual health and anatomy	“For example, how long is a period supposed to be? Like, what’s the cycle? How long is a regular cycle? Or like abnormal bumps – like what’s a normal bump… or how to feel breast cancer stuff. Stuff like that.” “What’s the prostate? What’s a vasectomy?” “The mechanisms of different biological processes like related to menstruation, pregnancy. I know I did like a lot of Googling about anatomy because I really had no idea what was going on in there.”
Sources of sexual health education	“Most of my sex ed came from the show Call the Midwife (laughs).” “[I learned about sex ed] just by Googling stuff.” “[I learned about sex ed] just through conversations with friends.”

Table 2.

Representative Quotes of Domain 2: Positive Feedback about the Prototype Digital Health Platform

Subtopic	Quote
Platform was understandable and engaging	I think it’s easy to understand the information. I feel like the diagrams are helpful. Just like learning, like visually seeing pictures of like the internal anatomy. I love the layout. It’s easy to understand the information. I love the “reveal” feature for privacy.
Videos facilitated comprehension	Man, it’s great because I feel like the video gave a great overview of all the different ways you can manage HIV. It’s not just about preventing it right. It’s also like a lot of things happen and it’s manageable. The voiceover was really clear, and I understood everything… like it wasn’t a whole bunch of like, jargon.
Comprehensive information	I like the information about insurance and local clinics and LGBTQ+ resources. For me, I think that most of the topics you would ever need to know are covered on the website. I think everything is there. Everything you would need to know about sexual reproductive health is there in one place… I think this is really the best way to receive this information.
Acceptability of sexually transmitted infection testing feature	If I needed to get tested, or like help a friend get tested, I’d say definitely I know now how to do that because I’d use this website. I was just like reading through like the kits, specifically how to like, insert it, and like the images – you know the steps on how to do it… it was nice having everything and instructions… like I remember seeing how to send the package, like how to use the kit and how to send them back. I felt like everything was like in one page and I liked it.
Acceptability of anonymous ask feature (“Ask Nellie” column)	[The Ask Nellie column] seemed very inviting when I first started the video, and I felt like it answered a lot of questions. I like the Wiki How-style FAQ section at the bottom [of the Ask Nellie column page].
Likelihood of sharing with peers	I think if a friend of mine saw [the website], they’d like make a mental note of it. If they didn’t need it then, they’d save it for when they needed it. I think I should recommend [the website] to them for questions because you might not know that they have that question but they may have something that they really want to know about. So I think giving them [the website] would be very good. Yeah I’d recommend it just because, well apart from it being a very, like overall informative website, I feel like it has a lot of resources that not a lot of other places usually tend to offer. And the composition of the website is very welcoming overall. I will absolutely use this website and also recommend it to my friends because I think it is a really good resource for people to be looking at information that they need.

Table 3.

Representative Quotes of Domain 3: Suggestions to Improve the Prototype Digital Health Platform

Subtopic	Quote
Suggestion to add peer reviews	[Reviews from others] would make it more trustworthy. You know, like, the fact that other people use it, and the different variety in comments and experiences. I love like, if there were a review page, that would really help. If a person uses it and has the ability to post a review on it‖ so like knowing that someone else used it and it was totally fine will encourage other people to use it too.
Suggestion to add alternative viewing options	You know, sometimes, the app loads more trustworthy than a website. I kind of have this fear that everyone’s listening in on all the videos that I’m watching. Um, and I feel like for privacy’s sake, that would be a lot. It would be good to transcribe the videos. I’m a little bit scared of someone watching over my shoulder. I mean they can judge if they want to. I mean, you’re learning and you’re getting more information in your head. You know you have all these younger siblings who might just walk in and see what you’re looking at.

Discussion

This study sought youth perspectives on a novel digital health platform that included SRH educational content and free self-collected STI testing and treatment. Overall, participants expressed enthusiasm and willingness to use the digital health platform as a reliable SRH educational tool and a non-clinic-based option for STI testing. We found that youth have concerns about the reliability of the SRH information they receive in school, as well as from their peers, social media, and television media. Our study found a lack of consistency with SRH education. Participants reported that some teachers may skip sex education in school altogether, whereas others may teach it once. Also, some participants cited that SRH education was taught too briefly, too early, or too late in their K-12 education timeline for it to feel effective. Literature has shown that teachers may face barriers to teaching sex education, such as lack of knowledge or resources, personal discomfort, and fear of parent or administrative response, which strengthens the need for additional SRH educational resources such as violetproject.org.¹⁷

Furthermore, we found that privacy is important to youth, which supports themes identified in other literature.¹⁸ Participants had concerns about the confidentiality of the questions they asked adults and about seeking resources in person. Our participants preferred to be able to ask questions anonymously and access SRH resources on their phones or other small electronic devices as opposed to laptop or computer screens that can feel more exposed. Additionally, participants desired to be able to access this information for free as that removes the barrier of needed parental approval or financial support.

There are some limitations. The prototype platform was reviewed by a group of youth living in Baltimore City, Maryland, and these youth may not be representative of a larger population. Furthermore, no participants identified as cis-men, and the platform should be piloted among this population. Lastly, we did not provide details regarding the prototype’s functionality. However, we have gathered comprehensive insights into youth perspectives, specifically regarding the STI testing component of the platform.¹⁶

The Violet Project digital health platform was viewed favorably by youth, and their feedback was incorporated into the design. This SRH tool fulfilled youth’s desire for free, accessible, and reliable SRH. Future plans for this prototype include leveraging social media and community outreach within the state to raise awareness of the platform as a comprehensive bundle of SRH education and clinical services tailored to youth. Our short-term objective is to incorporate the platform into the educational materials available to patients in our health system. Future research directions for this prototype encompass exploring effective strategies for encouraging youth to undergo STI testing and examining factors that impact user engagement on the platform to enhance user satisfaction.

Data availability statement

Data are available upon reasonable request to the corresponding author.