The Ethics of Youth-Centered Innovation

Posted Novembro 12, 2018
Impact Area Adolescents & Youth, Sexual & Reproductive Health

By Rena Greifinger, Senior Project Lead, MaverickNext, Esther Nantambi, Radio Presenter and Communications Assistant, Youth Equality Center, and Amy Uccello, Senior AYSRH Technical Advisor, PSI

Human-Centered Design (HCD) allows us to step into the lives of the young people we serve, and work together to better create solutions. If done correctly, HCD can spark innovative thinking to ignite breakthrough design. But without the proper systems and guidelines in place, the process can potentially be harmful to young people. Esther Nantambi asks Rena Greifinger, the senior lead for PSI’s MaverickNext program, and Amy Uccello, PSI’s senior adolescent and youth sexual and reproductive health technical advisor why the time is now to refocus our attention on young people’s safety and integrity, particularly at the nexus of where research and program implementation meet. They discuss why PSI, in partnership with the HCD Exchange and dozens of signatories, is launching the Commitment to Ethics in Youth-Powered Program Design.

Esther Nantambi: Before diving into guidelines, let’s start at the beginning. What is HCD?

Rena Greifinger: HCD is a creative problem-solving process that brings health consumers in as equal project partners.

Amy Uccello: HCD allows us to apply a human-centric lens to program design and infuse empathy and insights into the body of evidence we’re working with. In doing so, the process incites a unique programmatic response in a way that numbers alone often can’t.

EN: What prompted the development of the Commitment to Ethics in Youth-Powered Program Design?

AU: We’ve long-held to high-quality protection measures, such as Institutional Review Board (IRB) approvals. However, HCD is still new in global health and may not require IRB approvals. A mutually agreed upon Commitment among donors, implementers, evaluators, design firms and young people offers an additional safety net to ensure HCD remains a trusted and safe space for all young people involved.

RG: The Commitment complements rather than replaces existing validated guidelines and protocols for ethical research. The Commitment is a shared intention to continually improve, as well as an invitation to our community to openly discuss the complexity and nuances of this work.

EN: What core principles does the Commitment outline?

RG: There are 21 principles organized into three categories: Respect, Justice and Beneficence (Do No Harm). Respect means valuing young people and the lives they live. Justice refers to the inherent power imbalance between young people and adults, including those from within and outside the program country. We ensure justice by bringing young people into the HCD process as equals in program design and delivery. Beneficence means maintaining the well-being of young people when conducting HCD.

EN: What is at risk if we don’t uphold these principles?

RG: We risk making a vulnerable group even more vulnerable to stigma and negative consequences, while also losing their respect and partnership. Hopefully, everyone is already keeping ethics at the center of their work; it’s just a friendly nudge to our community to continue to walk our talk of meaningfully and safely working in partnership with young people.

AU: Global commitments help to keep each of us accountable, drive advocacy efforts among those who have not yet committed and instill clear and agreed upon parameters for all those who commit.

Banner image: © Ideo.org

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Digitalizing contraceptive counseling to reach rural women and girls in Ethiopia

By: Fana Abay, Marketing and Communications Director, PSI Ethiopia

In rural Ethiopia, women and girls often face significant barriers in accessing healthcare facilities, which can be located hours away. Moreover, there is a prevailing stigma surrounding the use of contraception, with concerns about potential infertility or the perception of promiscuity. To address these challenges, the Smart Start initiative has emerged, linking financial well-being with family planning through clear and relatable messaging that addresses the immediate needs of young couples—planning for the lives and families they envision. Smart Start takes a community-based approach, utilizing a network of dedicated Navigators who engage with women in their localities. These Navigators provide counseling and refer interested clients to Health Extension Workers or healthcare providers within Marie Stopes International-operated clinics for comprehensive contraceptive counseling and services.

In a significant development, PSI Ethiopia has digitized the proven counseling messaging of Smart Start, expanding its reach to more adolescent girls, young women, and couples. This approach aligns with the priorities set by the Ethiopian Ministry of Health (MOH) and is made possible through funding from Global Affairs Canada. The interactive and engaging digital messaging has revolutionized counseling services, enabling clients to make informed and confident decisions regarding both their finances and contraceptive choices.

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By December 2023, PSI Ethiopia, working in close collaboration with the MOH, aims to reach over 50 thousand new clients by leveraging the digital counseling tool offered by Smart Start. This innovative approach allows for greater accessibility and effectiveness in providing sexual and reproductive health services, contributing to improved reproductive health outcomes for women and couples across the country.

Building community health worker capacity to deliver malaria care

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Community health workers (CHWs) are critical lifelines in their communities. Ensuring they have the training, support, and equipment they need is essential to keep their communities safe from malaria, especially in the hardest to reach contexts.

For example, in Mali, access to formal health services remains challenging, with four in ten people living several miles from the nearest health center, all without reliable transportation or access. In 2009, the Ministry of Health adopted a community health strategy to reach this population. The U.S. President’s Malaria Initiative (PMI) Impact Malaria project, funded by USAID and led by PSI, supports the Ministry with CHW training and supervision to localize health services.

In 2022, 328 thousand malaria cases were recorded by CHWs); 6.5 thousand severe malaria cases were referred to health centers, according to the national health information system.

During that time, the PMI Impact Malaria project (IM) designed and supported two rounds of supportive supervision of 123 CHWs in their workplaces in the IM-supported regions of Kayes and Koulikoro. This included developing and digitizing a standardized supervision checklist; and developing a methodology for selecting which CHWs to visit. Once a long list of CHW sites had been determined as accessible to supervisors for a day trip (including security reasons), the supervisors telephoned the CHWs to check when they would be available to receive a visit [as being a CHW is not a full-time job, and certain times of the year they are busy with agricultural work (planting, harvesting) or supporting health campaigns like mosquito net distribution].

Supervisors directly observed how CHWs performed malaria rapid diagnostic tests (RDTs) and administered artemisinin-based combination therapy (ACT). They recorded CHW performance using the digitized checklist, interviewed community members, reviewed records, and provided on-the-spot coaching. They also interviewed the CHWs and tried to resolve challenges they expressed, including with resupply of commodities or equipment immediately or soon afterwards.

Beyond the observed interactions with patients, supervisors heard from community members that they were pleased that CHWs were able to provide essential malaria services in the community. And the data shows the impact.

In IM-supported areas of Mali, 36% of CHWs in the first round were competent in performing the RDT, which rose to 53% in the second. 24% of CHWs in the first round compared to 38% in the second were competent in the treatment of fever cases and pre-referral counseling. Between both rounds, availability of ACT increased from 80 percent to 90 percent.

Supportive supervision with interviews and observations at sites improved the basic competencies of CHWs between the first and second rounds, and additional rounds will help to understand the longer-term programmatic benefits.

Taking a market-based approach to scale sanitation in Ethiopia

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“Rather than relying on traditional aid models that often distribute free or heavily subsidized sanitation products, market-based sanitation creates sustainable and affordable solutions, integrating market forces and supporting businesses to grow.”

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Promoting self-managed care like Self-testing and Self-Sampling

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Seven years ago, the landscape of HIV self-testing lacked global guidelines, and only the U.S., the UK and France had policies in place that allowed for HIV self-testing. High disease burdened countries in low-and-middle-income-countries (LMICs) lacked evidence and guidance for HIVST despite major gaps in HIV diagnosis.

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The shortage of skilled health workers is widely acknowledged as a significant barrier to achieving Universal Health Coverage. To address this challenge, PSI supported ministries of health to develop a digital ecosystem that brings together stewardship, learning, and performance management (SLPM). The ecosystem enhances training, data-driven decision-making, and the efficiency of healthcare delivery.

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Kassai’s analytics system to follow learners’ success rate and to adjust the course content to learners’ performance and needs. Kassai analytics are integrated with DHIS2 – the Health Management Information System (HMIS) of Angolan MOH, to be able to link learners’ knowledge and performance with the health outcomes in the health facilities. The analytics track learners’ performance by course and gives visibility by health provider, health facility, municipality, and province. Each course has pre-and post-evaluation tests to track progress of learning, too.

By the end of 2022, there were 6,600 unique users on the Kassai platform and 31,000 course enrollments. PSI Angola’s partnership with UNITEL, the largest telecommunication provider in Angola, allows for free internet access to learn on the Kassai for all public health providers in Angola. Building on its success for malaria training, Kassai now also provides courses in family planning, COVID-19, and maternal and child health. This reduces training silos and provides cross-cutting benefits beyond a single disease.

Implementing the SLPM digital ecosystem brings numerous benefits to health systems. It allows for more strategic and efficient workforce training and performance management, enabling ministries of health to track changes in health workers’ knowledge, quality of care, service utilization, and health outcomes in real time. The ecosystem also supports better stewardship of mixed health systems by facilitating engagement with the private sector, aligning training programs and standards of care, and integrating private sector data into national HMIS. Furthermore, it enables the integration of community health workers into the broader health system, maximizing their impact and contribution to improving health outcomes and strengthening primary healthcare.

The Ethics of Youth-Centered Innovation

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The Consumer as CEO

Digitalizing contraceptive counseling to reach rural women and girls in Ethiopia

Building community health worker capacity to deliver malaria care

Taking a market-based approach to scale sanitation in Ethiopia

Promoting self-managed care like Self-testing and Self-Sampling

Using peer coaches to counter HIV stigma in South Africa

simplifying consumers’ journey to care in Vietnam

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Training health workers in Angola

WHISTLEBLOWER AND ANTI-RETALIATION

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The Future of Work

Meaningful Youth Engagement

Zero Tolerance for Modern-Day Slavery and Human Trafficking

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02 Breaking Taboos

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