19Jan

Congrats VOICE Open Call Finalists | By the VOICE Open Call Study Team

The VOICE study team is thrilled to announce the results of our open call on ideas to improve youth consent for HIV research participation in low- and middle-income countries (LMICs)!

Youth in LMICs face a high burden of HIV morbidity and mortality. It is thus of utmost importance to include young people in HIV research to help ensure that HIV treatment and prevention strategies are effective for youth. However, the inclusion of young people in HIV research involves a number of special considerations. One such consideration is the issue of consent for research participation: there are many social, ethical, and legal challenges with obtaining consent for young people to participate in HIV research studies. For example, some young people may not be comfortable sharing information about their sexual or other risky behaviors with their parents, and may not want to participate in research if their parents are required to give permission. Some countries allow parental permission to be waived under certain circumstances, but there is a lot of variability in the conditions for doing it and how often waivers are granted. As a result, young people are under-represented and routinely excluded from HIV research, resulting in data gaps.

In partnership with the adolescent HIV research consortium PATC3H, we launched a crowdsourcing open call-VOICE to solicit and identify promising solutions that would help to improve youth consent processes in LMICs. Crowdsourcing involves having a group of individuals attempt to solve a problem, and then sharing the solutions with the public. The name of our open call was VOICE: The HIV Open Call on Informed Consent and Ethics in Research Involving Young People.

The VOICE open call was held from August 23 – October 15, 2021. Participation was open to anyone living or working in an LMIC. The open call was distributed via email and social media to reach a diverse array of young people, parents, HIV researchers, community organizers, and ethicists. Promotional events also included an Instagram Live hosted by the 4 Youth By Youth team, a YouTube video explaining the open call, and outreach to international HIV- and ethics-related organizations.

In total, we received 110 submissions to the open call from participants across 12 different LMICS. Two study team members independently assessed all submissions for eligibility. In total, 65 submissions were eligible and forwarded to our judging team. Eligible submissions were each evaluated by three independent judges for clarity, relevance, feasibility, innovativeness, and potential for positive impact, and were scored on a scale from 1 to 10 (10 being highest quality), with a final average score calculated for each.

The evaluation process resulted in 25 finalist submissions with a score of 6 out of 10 or greater. The VOICE Steering Committee awarded $2000 USD in prizes divided equally among our 25 finalists. Below this post is a list of our finalists’ ideas for how we can improve youth consent in HIV research in LMICs. Our next step will involve planning for a designathon to help turn these brilliant ideas into practical strategies for policy-makers, researchers, and ethics review committees to help enhance youth consent processes. Stay tuned for more great work from the VOICE team and our finalists!

We are thrilled to have received so many creative, thoughtful submissions to the VOICE open call, and would like to thank everyone who submitted their ideas. Special thanks also go to our Organizing Committee, Steering Committee, and Judging Team for all their help in running the open call. And finally, we are very grateful to 4 Youth By Youth for hosting and promoting the open call. Thank you for making this research possible!

Congratulations to our VOICE Open Call finalists! Below are the titles of our top 25 submissions [In No Particular Order]:

  • Car-SeDe Model: Developing a Service Delivery Point – Caregiver Based System to Obtain Young People’s Consent
  • Enhancing Young People’s Participation in HIV Research: Addressing the familial, cultural, peer and religious challenges
  • Youth Amplified HIV Interventions [YAHI]: Implementing multi-pronged approaches to improve young people’s engagement in research
  • Improving informed consent by mitigating vulnerabilities; the role of shared identities
  • Advocacy for Self Consent in HIV Research and Ethics
  • Meeting Youth Where They Are At: Obtaining Research Consent from Young People in Educational Settings
  • Legal Review as a tool for improving HIV consent in Nigeria
  • Solving it the African Way: Peer research and communitarianism as solutions on informed consent and ethics in research involving youth
  • Why Can Research Not be Fun? Making the Consent Process More Engaging for Youth
  • Educating Parents/Caregivers to Promote Acceptability of Youth Participation in HIV Research
  • Enhancing the Privacy and Confidentiality of Youth Participants in HIV Research
  • Communicating research processes and ethics using creative and youth-friendly methods
  • Broader consent choices and procedures for better youth engagement
  • Let’s Make HIV Research More Youth Friendly: Incorporating processes to enhance youth engagement
  • Yes , the Youth can decide too: Empowering youth as decision-makers through HIV research education
  • Transfer of Authority Tool (T.A.T): A strategy to review consent procedures”
  • Promoting HIV research participation among young people through a legal and integrative social approach
  • Parent-community based approach as a useful tool in improving HIV research
  • Rethinking the Informed Consent Process on HIV Treatment Among Young People in a Low and Middle Income Country (LMIC)
  • The power of youth voices in HIV research: Recruiting and training Young Research Champions (YRC) to improve the consent process
  • Enhancing HIV Awareness Among Young People and Addressing Language Barriers to Consent
  • Empowering Communities Through Engagement: Tackling Cultural, Religious and Literacy Barriers to Consent
  • Engaging stakeholders and ethics committees as methods to improve the consenting process for young people
  • Video Information combined with E-consent for Youth in Zimbabwe
  • Innovate4GenZ: Using Creative Approaches to Improve Youth Participation in HIV Research

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