ENGAGING THE NEXT BILLION USERS

4 min readDec 1, 2021

Towards addressing how learned behavioural patterns provoke hindrances to hiv research participation among young persons in low income regions*.

The challenge of managing HIV/AIDS is global yet we do not talk about it nearly enough even though 90% of patients live in Low-and-middle income regions; Africa, Asia, and the Americas. Negative attitudes towards persons living with HIV is widespread and evidence shows that this is affecting research participation among young persons in these tremendously affected regions.¹
Factors such as illiteracy, poverty, socio-cultural norms, discrimination against specific groups, and poor infrastructure complicate the situation. Popular beliefs, norms, and attitudes are underlying factors that provoke barriers to consent. HIV-related stigma is frequently associated with lower testing rates, secrecy, and late entry into comprehensive health care leading to higher transmission and mortality in LMICs consequently generating barriers to research participation, but who is really to blame in a situation where the people don’t know any better?

Of course, a diverse range of participants produces higher quality research. While it is clear that adequate representation is important there is also the need to consider legal cum ethical issues which may arise, particularly with the young persons who may not be up to the legal age of consent where the researcher has to seek consent from an adult parent or guardian for them to participate in the research study. While some scholars argue for consent waivers to facilitate a more diverse pool of research participants, certain psychosocial factors create context for most parents refusal to grant consent in these regions thus affecting the quality of data.

In reality shared attitudes influence thought processes, perceptions, and choice of actions toward certain topics, ideas, or situations. Meet Angela, a 15-year-old high school student based in Africa, Angela was born and raised in a densely populated suburban neighbourhood in Benin City, the heartbeat of Nigeria. She is one of many peers who has developed negative predispositions towards persons living with HIV learned from the larger society, including adult family members who share views that suggest persons living with HIV are being "punished for their sins of fornication" there is a tendency to stigmatize persons living with the virus due to such sentiments. Within the context of this paper, more disturbing is the fact that such sentiments create ripple effects such as secrecy and lower rates of testing leading to higher transmission and mortality as well as provoking barriers to participation in HIV research.

Collectively held dispositions require constant engagement to alter. This paper will now go ahead to present a case for consistent action geared towards eliminating all forms of HIV-related stigma and discrimination directly in line with the UNAIDS-SDGs agenda 2030.²

A promising way to amplify young people's participation in broad HIV studies is continuous engagement through the creation of digital content, and influencer partnerships, targeting the next billion users. Plain and simple yet this approach promises wide-reaching impact useful to enhance youth participation in surveys involving many participants.

Welcome the next billion users

There are over one billion people around the world just starting to use the Internet referred to as the next billion users. Most of these users are from Africa, Asia and the Americas. It is also projected that another billion users would be online by 2030.³
Another window of opportunity is therefore created to engage these users and counter certain HIV-related assumptions currently provoking barriers to consent. Although this paper focuses on this particular topic of interest, constant engagement is by all means necessary in all areas of life especially concerning public health. It is increasingly obvious that Social Media is becoming an important tool in shaping group perceptions and attitudes in our global village.
More people than ever are connected through online platforms, ushering in an era of constant socialisation and resocialisation enabled by digital technologies.

Welcome to the new age folks, the age of information

The top six Social Media giants each claim more than one billion monthly active users. With over 520 million additional users joining social media in the first half of 2021 the new media becomes an indispensable tool for community engagement and social transformation.

A closer look at the facts and figures reveals that Instant messaging and social media dominate internet use in Low-and-Middle income countries.⁴
Most internet users, especially the Next Billion Users spend most of their time on social media activity watching free videos on social platforms such as Youtube and Instagram. This information should guide future engagement strategies. Through the creation of targeted digital content and strategic partnerships geared towards eliminating all forms of HIV-related discrimination and biases the model recognises the older generation and parents who may not be as active in the digital space within the larger web of interactions which make it practical for them to encounter new information from the younger generation and be resocialised. Socialisation is a lifelong process of learning and relearning, in all aspects of our lives as intelligent beings humans are programmed to adapt to new information which guides our thoughts, feelings and actions towards certain topics or events.

*I originally wrote this article as an entry for THE VOICE PROJECT an open call organised by The Adolescent Bioethics Working Group of the PATC³H Consortium on HIV research participation among adolescents in Low and Middle income countries.

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Written by Destiny Otoadese