VOICE Open Call

VOICE: HIV Open Call on Informed Consent and Ethics in Research

Organizer:

The Adolescent Bioethics Working Group of the PATC3H Consortium

Background:

Young people in low- and middle-income countries (LMICs) are at increased risk of HIV infection, and experience high rates of HIV-related morbidity and mortality. In order to develop safe and effective HIV treatment and prevention strategies for youth, there is an urgent need to include young people (age 10 to 24 years old) in research. However, 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 propose a crowdsourcing open call. Crowdsourcing involves having a group of individuals attempt to solve a problem, and then sharing the solutions with the public.

Purpose:

The purpose of this crowdsourcing open call is to identify potential solutions to the challenges with obtaining young people’s consent to HIV research participation in LMICs. In this open call, “young people” refers to individuals age 10 to 24 years old. Solutions may address any aspect of the challenges with obtaining consent for young people to participate in HIV research, including social issues (e.g. how can we make the informed consent process easier to navigate for youth and/or their parents/guardians?), ethical issues (e.g. how should we obtain consent for particularly vulnerable young people, such as LGBTQ youth or youth experiencing homelessness?), and/or legal issues (e.g. how can policies related to consent to research participation be shaped in ways that would help researchers to include more young people in HIV studies?)  The submissions to this open call will be used to design a practical guide for enhancing youth consent to HIV research participation that can be used by a wide range of stakeholders in resource-constrained settings, including HIV researchers, policymakers, and youth HIV advocates.

Formats for Submission:

Please submit your proposed solution as text (maximum 500 words). In your submission, please be sure to tell us what problem(s) with consent to HIV research participation for young people that your solution is meant to address. You will also have the option to provide additional details on what kinds of HIV research studies your solution might work best for (50 words maximum). For example, perhaps your solution to improve young people’s consent to HIV research participation might work best for bigger studies involving lots of youth participants, or maybe smaller studies involving just a few participants instead. Submissions will be accepted online using our submission form here or by email. Submissions will be accepted in all languages, however, if the language of the submission is not English, a translated version of the submission will also be required.

Judging:

All submissions will be reviewed by three to five independent judges. Judging criteria will include the following: 

(1) clear description of the proposed solution;    

(2)  relevance  to improving adolescent consent to HIV research participation;                                                                                                                                        

(3) innovation of the proposed solution;  

(4) feasibility of implementing the solution for improving adolescent consent to participate in the type/risk level of  HIV research specified, in one or more LMICS;  

(5) potential for the solution to have a positive impact on consent processes for adolescent HIV research participation.

Prizes:

We have $2000 USD in prizes available for this open call. All participants will receive a certificate of commendation. All submissions with a mean score of 7/10 will be discussed by the Steering Committee to make final decisions about identifying finalists and allocating prizes. In addition, finalists will receive a commendation and will be invited to further revise and resubmit their ideas for a second round of evaluation using the same judging criteria. Top-scoring finalists from this second round will be invited to attend a virtual designathon to develop a practical guide for enhancing consent to HIV research participation among young people using the results of the open call. The practical guide will then be disseminated to relevant stakeholders, such as national Ministries of Health, the International AIDS Society, and the World Health Organization.

Steering Committee Members:

Joseph Tucker, Suzanne Day, Seema Shah, Erin Wilson, Theodore Ruel, Joana Falcao, Juliet Iwelunmor, Michael Mbizvo, Oliver Ezechi, Weiming Tang, Stuart Rennie, Mesoma Igbokwe, Jerome Singh, Kadija Tahlil, Elzette Rousseau

Organizing Committee Members:

Suzanne Day, Joseph Tucker, Kay Youngstrom, Kelechi Chima, Kate Muessig, Susan Nekengasong, Chisom Obiezu-Umeh, Juliet Iwelunmor, Ucheoma Nwaozuru, Titi Gbaja-Biamila, Kadija Tahlil

VOICE Contest Timeline

FREQUENTLY ASKED QUESTIONS

 

Participation is open to anyone who lives or works in a low- or middle-income country (LMIC). A list of which countries are considered LMICs can be found on the OECD website by clicking here. We highly encourage submissions from young people, parents of adolescent children, HIV researchers, HIV advocates, ethicists, community organizers, and members of ethics review boards.

Yes! However, if you are age 17 years or younger, you will need to first contact the research team for instructions on how to submit an idea to the open call. Most countries require people younger than age 18 to submit a parental/guardian consent form for research participation. If you live in a country with this requirement, we will send you a parental/guardian consent form to have signed, and will provide you with a link for collecting your open call submission online (or a downloadable copy of the submission form if you prefer). If you live in a country where parental/guardian consent is not required, we will send you a link to independently submit your idea to the open call.

This open call is organized by the Adolescent Bioethics Working Group of the PATC3H Consortium: Prevention and Treatment through a Comprehensive Care Continuum for HIV-affected Adolescents in Resource Constrained Settings.  The open call is supported by the PATC3H Consortium.

We are looking for your ideas about solutions to enhance adolescent consent to HIV research participation. There are many social, ethical and legal challenges with obtaining adolescent consent to participate in HIV research studies. What would be a potential solution that could help to enhance the consent process for adolescents? We are specifically looking for answers to this question from low- and middle-income countries (LMICs). Anyone age 18 years and older who lives or works in an LMIC can submit to the open call. We encourage you to consider solutions that could be applied to more than one LMIC.

 

Your submission doesn’t have to solve all challenges that may exist with adolescent consent to HIV research participation: you can choose to focus on a solution that could help to overcome just one specific challenge. You can also make more than one submission to the open call – if you have lots of ideas for solutions to the challenges of adolescent consent, we want to hear them all!

We are interested in hearing your ideas to improve adolescent consent for participation in any kind of HIV research studies. HIV research studies can include studies of how to prevent HIV in adolescents, as well as studies to treat HIV in adolescents. Prevention and treatment studies can be behavioral or biomedical:

  • Behavioral studies: research that involves using a behavioral or social science approach to examine people’s actions, including things like decision-making, habits, and health-related behaviors. Examples of behavioral studies includes studies to learn how to help people change their behaviors to prevent HIV, studies of how to help people better understand HIV prevention or treatment options, and studies of how to help people stick with an HIV treatment program.
  • Biomedical studies: research that involves using a physical science approach to examine human physiology and the medical treatment of a disease. Most biomedical research involves clinical trials, which are phased studies designed understand whether new health devices, pharmaceutical therapies, or other physical treatments are safe and effective for use by humans. Examples of biomedical studies include studies of new medications to prevent HIV, and studies of new medications to help keep people living with HIV healthy.

We are interested in ideas to improve adolescent consent for participation in HIV research studies of any size. Some HIV studies involve only a small number of participants, while other studies may involve hundreds or even thousands of participants. Additionally, some HIV studies require only a small amount of time and effort to participate in; for example, completing a survey or providing a blood sample. Other studies may involve a lot of time and effort to participate in; for example, taking part in a clinical trial that is testing new drugs to treat or prevent HIV.

You can submit your idea using our submission page using our online submission form. You can also download a copy of the submission form using this link and the consent form using this link, which you can fill out and email to us at opencallVOICE@gmail.com

Yes, you can submit a response to the open call as either an individual or as a team of two or more people working together. The submission process is the same and you will note this on the submission form. We especially encourage teams of adolescents and adults working together to submit an idea! Please note that if a member of your team is under age 18, a signed parental/guardian consent form will be required.

An open call has a group of individuals solve a problem and then share exceptional solutions with the public. You can learn more about crowdsourcing open calls on our resources page

Informed consent for research refers to a process where a person learns about the details of a study in order to decide whether they want to agree to join the study. The details of the informed consent process can impact whether and how youth can participate in research. For example, in many countries, parental permission is required in the informed consent process for youth to join studies, which may exclude some youth from participating.

Please see our resources page for summaries and links to resources where you can learn more about the topic of including young people in HIV research and the challenges of obtaining informed consent for youth.

No, you can submit as many entries as you want. At the same time, be mindful that quality of entries is more important than quantity. If you plan to submit your idea as a team or group of individuals, please avoid submitting multiple entries from members of the same team, and instead select a single individual to submit an entry on behalf of the team.

The deadline for submissions is October 15th, 2021

Submissions will be evaluated based on the following criteria:

  1. Clear description of the proposed solution to improving adolescent consent to HIV research participation.
  2. Relevance of the proposed solution to for enhancing adolescent consent to HIV research participation
  3. Innovation of the proposed solution
  4. Feasibility of implementing the solution in one or more LMIC
  5. Potential for the solution to have a positive impact on consent processes for adolescent HIV research participation

 

We have $2000 USD in prizes for this open call. Most prizes will be based on merit, although we will also allocate some prizes based on participation. The steering committee will make final decisions about the amount and allocation of prizes. In addition, finalists will receive a commendation and will be invited to revise and resubmit their ideas for a second round of evaluation using the same judging criteria. We will link finalists with content experts who can help to assist with further refinement of their proposed solutions (e.g., bioethicists, adolescent HIV researchers, policy makers/Ministry of Health). From this second round of evaluation, top-scoring finalists will be invited to attend a virtual designathon to develop a practical guide for enhancing adolescent consent to HIV research participation.

Finalists will be notified of their selection through email in November 2021. Applicants who are not shortlisted will also be advised of the open call results through email.

With your submission to the open call, you will also be asked to provide your name and contact information. Neither your name nor contact information will be shared with anyone outside of the open call Steering Committee or Organizing Committee without your permission. We also understand that some people may want to participate in the open call but are not comfortable giving their name and contact information. Providing this information is completely optional: you can still submit an idea to the open call even if you would prefer not to give your name or contract information. If you choose not to, your submission will still be evaluated and included among the results of the open call; however, please be aware that without contact information we will not be able to follow up to provide you with the results of the open call, nor will we be able to invite you to revise and resubmit your submission for an opportunity to participate in the designathon if your submission is selected among the finalists.

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