#TheHealthYouthWant: a qualitative analysis of a global crowdsourcing open call for innovative ideas to promote adolescent health and well-being in countries with a high HIV burden

Crowdsourcing open call

A partnership with representatives from UNICEF, WHO, UNAIDS, the Special Programme for Research and Training in Tropical Diseases, For Youth by Youth (4YBY), and Social Entrepreneurship to Spur Health brought together a youth-led group to organize a global crowdsourcing open call in 2023 called ‘#TheHealthYouthWant.’ Following the Special Programme for Research and Training in Tropical Diseases Crowdsourcing in Health and Health Research Practical Guide, the open call included the following steps: forming a youth-led organizing committee, engaging young people to share their ideas; evaluating ideas based on prespecified criteria; recognizing exceptional finalists; and sharing the ideas.¹¹ We used youth participatory action research as a conceptual approach¹³ to inform the development of the open call. Participatory action research focuses on encouraging participation from key stakeholders, and then using these experiences to catalyze action and research.¹⁴ This conceptual approach has been widely used in sexual and reproductive health research,^15,16 survey development,^17,18 and open innovation.¹⁹ In our approach, we used an open call to involve the very stakeholders whose health we seek to improve: adolescents and youth. The open call formed part of a larger multi-sectoral collaboration called the Blueprint Collaborative, which aims to identify actionable steps to improve adolescent health and well-being in high HIV burden countries.

The organizing committee distributed the open call for entries through social media (Instagram, WhatsApp, LinkedIn), email and webinars. The open call solicited submissions from 30 June to 31 July 2023. Young people were invited to provide a brief description (<500 words) or a short video (3 min) answering one of the following challenge questions: ‘How might we totally and fundamentally reimagine organizing our healthcare systems and societies to support adolescent health and well-being in countries that have a high burden of HIV?’ or ‘How might we develop solutions that can support and strengthen adolescent health and well-being in the future, taking into account current and possible threats, such as conflict and pandemics, and current trends, like climate change, rising inequality, migration, urbanization and digitalization?’. The open call had four categories to guide submissions: innovations for health; innovations that promote adolescent-centered processes, systems and policies; innovations for behavioral change related to health; and ‘surprise us’ innovations. The final category was intended for submissions that did not fit clearly into the other categories, but still addressed the main challenge questions. The challenge questions and submission formats were deliberately open-ended to encourage innovation and creativity.

Geographical scope

Participants were asked to focus their idea on the following high HIV burden countries: Brazil, Cameroon, Côte d’Ivoire, the Democratic Republic of Congo, Ethiopia, Kenya, Malawi, Mozambique, Nigeria, Philippines, South Africa, Tanzania, Uganda, Zambia and Zimbabwe. These countries were selected because they account for 75% of the adolescent HIV burden. However, the open call was open to all young people, regardless of geography or location. We chose this inclusive approach to ensure a diverse range of ideas and perspectives, including from youngpeople who have migrated from their country of origin.

Eligibility for participation

The open call solicited ideas from young people to submit ideas on their own or as part of a team. Individuals older than 19 years were encouraged to participate as a member of a team. All teams had to include at least one adolescent, and team leaders could not be older than 30 years. All participants younger than 18 years were required to obtain parental consent before participating in the open call. Participants were allowed to submit ideas in any UN language (English, Arabic, Chinese, French, Spanish, Portuguese or Russian) using an online submission form or via email.

Evaluation of submissions

All submissions were screened for eligibility. A panel of judges rated each submission on a 1–10 scale (1 as worst, 10 as best), and each submission was evaluated by three independent judges. The panel of judges included health research professionals, organizational representatives and youth activists. Pre-specified scoring criteria included clarity of description, relevance, novelty, feasibility, scalability, sustainability, and promotion of equity and fairness (Supplementary material Table S1). Twelve people whose ideas were top-scoring ideas across each category were designated semi-finalists and invited to pitch their ideas to an independent panel of judges. The panelists declared eight finalists (four winners and four runners-up), and their ideas were referred for deliberations by a global collaborative convened to define how adolescent HIV programs might be delivered differently in the future (the Blueprint Collaborative). Evidence and weighting of the effectiveness of these interventions were assessed in a complementary systematic review.²⁰ Finalists and runners-up of the open call received cash prizes (US$1500 for finalists and US$500 for runners-up). Additionally, their ideas were presented to senior leadership at UNICEF/WHO/UNAIDS as part of a multi-sectoral HIV strategic planning exercise aimed at improving adolescent health and well-being.

Data analysis

We conducted a thematic analysis of all eligible submissions to the open call (n = 107). The thematic analysis included several stages: developing a codebook, conducting line-by-line coding of text submissions and video transcriptions; identifying descriptive themes; and generating analytic themes.²¹ A codebook was developed to classify the submissions into descriptive themes. The codebook was developed using an inductive approach, which involved iteratively identifying ideas that emerged most frequently in the data and characterizing these ideas into categories. Two coders then tested the codebook against a handful of submissions, then made revisions and resolved discrepancies before moving to the stage of complete coding. Each of the two coders reviewed a selection of the submissions. All submissions were then characterized using the codebook, and overarching categories were closely examined to identify analytic themes. Descriptive statistics were used to summarize the characteristics of the primary participants who were listed on the open call submission form (team leads) and their submissions. All analyses were conducted using Excel.

Youth engagement

Young people were involved at every stage of this study from inception to dissemination of results. Four youth researchers served as co-leads of the open call organizing committee and analysis working group. The co-leads were compensated with a small honorarium for their time. All youth researchers in the organizing committee were nationals of low- and middle-income countries. The members of the organizing committee helped to publicize the open call through their networks and hosted informational webinar sessions. Youth were also involved as judges of the open call submissions and pitch evaluators. The judges were also compensated with a small honorarium for their time. Two youth researchers analyzed the findings of the open call and wrote up the results.

Ethical approval

This study was determined to be non-human subjects research using de-identified data by the University of North Carolina at Chapel Hill Institutional Review Board (approval number: 24-1665).

Intervention types

There were three main types of interventions identified through the thematic analysis: edutainment interventions (n = 73), digital interventions (n = 61) and peer-based interventions (n = 32). Some thematic categories overlapped with one another. As such, these three categories describe the primary theme underpinning each intervention.

Seventy-three interventions focused on edutainment interventions to promote HIV awareness and health among young people. Edutainment refers to the combination of education and entertainment to improve adolescent knowledge about sexual and reproductive health (SRH) in an engaging manner. These interventions utilized creative mediums preferred by young people, such as art exhibitions, theater and drama, to deliver sex education and improve uptake of HIV services. Other interventions included digital campaigns about LGBTQIA+ adolescent health and digital graphic magazines to promote self-learning among adolescents. Some edutainment interventions leveraged interactive radio call-in programs and other forms of mass media to engage a wider audience of young people, particularly youth in rural areas. A few interventions focused on training educators and healthcare workers to deliver comprehensive sexuality education through participatory methods. Overall, these interventions aimed to improve knowledge of SRH through engaging mediums that would specifically appeal to young people.

Sixty-one submissions described leveraging digital technology, such as artificial intelligence, chatbots, virtual reality, mobile health apps, telehealth and social media, to promote health and well-being among adolescents. For instance, one submission proposed using open-source artificial intelligence technology to promote access to adolescent-friendly information on HIV, SRH and mental health. Other ideas included developing chatbots to provide adolescents with real-time responses to health-related concerns. For example, a chatbot could provide an in-depth explanation of how to use a condom. Ideas within this theme also included locally-optimized virtual HIV information centers (e.g. websites) providing details on proximate HIV testing services, vetted HIV prevention materials and local sites providing HIV pre-exposure prophylaxis. Other interventions utilized virtual reality for therapeutic experiences aimed at improving mental health. Overall, digital technology was leveraged to increase the reach and utility of HIV interventions while enabling ease of use. To mitigate the digital divide, some interventions described using unstructured supplemental service delivery (USSD) to deliver the same intervention to people without access to the Internet. USSD allows users of mobile phones to access services in real-time by dialing a specific code, which is particularly useful in areas where Internet access is limited.

Thirty-two submissions described using peer-based networks to improve social and emotional well-being among adolescents. These interventions included school-based clubs created to provide a holistic approach to adolescent health and well-being, including mental health support. Ideas within this theme suggested training peer counselors to provide SRH education and psychosocial support, particularly to adolescents living with HIV. These ideas suggested establishing peer-to-peer support networks for decentralized adolescent HIV education, anti-stigma support groups and HIV resource navigation. These interventions additionally enhanced adolescent accountability in pursuing healthy behaviors and seeking care. Other interventions described youth-led collaborative networks where schools and communities unite to organize local events and workshops that support peer-to-peer knowledge sharing. Participatory elements were also mentioned, such as music, spoken word or storytelling. Overall, these ideas focused on enhancing social inclusion for adolescents while promoting health and well-being.

Intervention facilitators

Several intervention facilitators were identified in the thematic analysis. These were characteristics of the submissions (implicit or explicit) that enabled the intervention to deliver the intended outcomes, expand its reach and increase the involvement of participants over time.

Community engagement, which involved the participation and collaboration of community members in problem-solving, emerged as a key intervention facilitator (n = 53). This included establishing learning spaces to share HIV knowledge among community members, as well as the sharing of ideas to combat HIV stigma. Other submissions described organizing community events to raise awareness of HIV services and encourage community involvement in engaging young people to make use of them. Embedding HIV services within the community through temporary testing sites, mobile clinics and counseling tents could increase access to HIV services and reduce stigma. Other submissions described youth-led innovations as an important facilitator of HIV interventions. This occurred through the allure of an intervention being ‘for young people, by young people,’ which increases its attractiveness among communities of young people. At the core of this intervention facilitator was the recognition that social inclusion was important for creating feelings of belonging and importance among young people, which in turn helped to facilitate help-seeking behaviors among them.

Another key facilitator was tailoring interventions to suit young people (n = 42). Tailoring was defined as modifying HIV interventions to center the specific health needs of young people and ensure that they were accessible to any young person who needed them. Almost half of the submissions described tailoring the intervention to be youth-friendly through creating warm, non-judgmental and welcoming spaces for young people. Other submissions described scenarios where young people could directly deliver the intervention themselves or train health workers to deliver the intervention in a youth-friendly manner. A major concern expressed by adolescents was openly seeking HIV care, because it is often associated with stigma. Tailoring interventions to address these concerns was an important facilitator of improved youth involvement in HIV services.

Additionally, several submissions described leveraging collective intelligence to improve the effectiveness of interventions (n = 36). Collective intelligence leverages community wisdom from young people to solve a problem. These approaches included community-led monitoring, open calls, designathons and other crowdsourcing approaches.^11,22 Some methods that were employed under this theme included co-creating interventions with young people to ensure that services were appropriate and engaging. We defined co-creation as the intentional collaboration between several stakeholders such that each stakeholder has meaningful ownership over the intervention. Co-created interventions helped to ensure that young people were involved as creators of interventions and not merely recipients. Other submissions described incorporating feedback mechanisms to collect youth opinions for improving the intervention. Digital platforms collected feedback through ratings and user opinions, which were then used to generate data to improve the platform. Overall, collective intelligence emerged as an important mechanism for encouraging participation and retention of adolescents and youth.

Another intervention facilitator that emerged from the analysis was privacy protection (n = 12). This facilitator was particularly important within digital interventions. These ideas included providing adolescents with options to access care and services virtually, such as through telemedicine/telehealth. For those without access to the Internet, options included utilizing USSD or SMS. USSD interventions allowed users to place orders for health products, such as self-testing kits, while protecting their privacy. Other options included anonymously interacting with service providers through SMS. Such modifications helped to facilitate higher engagement with the intervention among adolescents, because adolescents had less fear about their identity or HIV status being revealed to family and friends. This seemed particularly relevant for young people living in areas with high levels of HIV stigma, because they were often concerned about discrimination related to seeking HIV services. Submissions under this theme emphasized prioritizing the privacy of young people to encourage more help-seeking behaviours in relation to HIV services.

Finally, several submissions described methods of incentivizing adolescents to engage with HIV interventions (n = 9). These incentives were mostly financial or material. Such ideas proposed leveraging incentives to influence behavior change and promote the utilization of healthcare services among adolescents. Such (often mobile-based) applications were designed to reward adolescents for using health services and engaging in health promotion activities. For instance, these ideas suggested that for every healthcare visit or participation in SRH educational campaigns, adolescents would receive points on their mobile app that could be redeemed to purchase health and well-being products, as well as other desired items at selected shopping malls or grocery stores. Such gamification techniques were attractive to young people and helped facilitate sustained engagement over time.

Intervention barriers

Submissions to the open call highlighted the challenges faced by adolescents living with HIV and the negative experiences they encountered while seeking health care. These challenges included community stigma; biased treatment from healthcare professionals; cultural, social and religious barriers; and limited access to accurate health information, often worsened by the digital divide. Thirty-eight submissions identified combating stigma as a primary motivation or objective for their intervention. Other submissions expressed concern with either conservative or non-existent access to comprehensive sexuality education by young people, thus limiting their knowledge of essential health information. These barriers, some influenced by cultural and religious factors affecting how sex and sexuality are addressed at home and in school, underscored the need to combat stigma and provide adolescent-centred resources to improve sexual health knowledge and promote the overall well-being of adolescents living with HIV.