EVENTS 2025

PxP Africa 2025

Virtual Meeting August 13, 2025

From Research Participants to Patient Partners in Research: Centering African Patients Voices

PxP Africa will be hosted for 75 minutes, starting at 16:00 Greenwich Mean Time (UTC), 17:00 West Africa Time (UTC +1), 18:00 Central Africa Time (UTC +2), and 19:00 (UTC +3) East Africa Time.

PxP Africa is the first regional PxP meeting, led by Joab Wako and Kwanele Asante who are members of the 2025 steering committee for the global PxP conference taking place in September. PxP Africa will spotlight the critical role of patient partners—especially African patients—as active contributors in research, not just research participants. The session will challenge the traditional top-down model of research and explore how lived experience can inform, shape, and lead meaningful, inclusive studies.

By completing the registration form, you are registering your interest in joining the meeting but your space is not guaranteed until you receive a confirmation email from PxP. Please note that the meeting is open to people from across the globe, but priority will be given to attendees based in Africa. Successful registrants will receive the Zoom link by email ahead of the meeting.

More speakers will be announced soon.

A man wearing glasses, a light plaid blazer, and a yellow polo shirt sits against a plain white background, smiling at the camera.

Action Amos he/him

Action Amos is a person with a lived experience and a public health advocate based in Malawi, working at the intersection of health equity, policy, and community empowerment. He is also a lived experience researcher and advocate with extensive regional and international engagement in neurological disorders, mental health and disability rights. He serves as Regional Coordinator for the International Bureau of Epilepsy and is a member of the Pan African Network for Persons with Psychosocial Disabilities (PANPPD). Currently, he is a researcher at the University of Edinburgh, where he earned an MSc in Mental Health in Children and Young People. He also holds an MBA in Leadership and Sustainability (University of Cumbria), a BA in Development Studies (Ireland), and a Postgraduate Diploma in Disability and Rehabilitation Management (Cavendish University). He is a Kofi Annan Fellow.

Action is a lived experience advisor to several institutions, including Aga Khan University and the Kenya Medical Research Institute (EPINA Project). He is a WHO Topic Expert Group member on mhGAP and IGAP implementation, part of the ILAE Psychoeducation Task Force, and an advisor to ICHOM. In Malawi, he serves on the UN Spotlight Initiative’s Civil Society Reference Group.

A picture of Kwanele Asante, a member of the PxP 2025 Steering Committee

Kwanele Asante

Kwanele Asante est l’ancienne présidente du comité consultatif ministériel sur la prévention et le contrôle du cancer de la République d’Afrique du Sud. Elle siège au groupe de travail de l’OMS sur la société civile sur les maladies non transmissibles et a reçu plusieurs prix pour son activisme sur l’équité dans la lutte contre le cancer en Afrique, dont le prix pour l’ambassadrice africaine du Global Health Catalyst de Harvard en 2016. Elle siège également comme représentante communautaire au comité consultatif sur la bioéthique du South African Medical Council, et a été membre du comité consultatif externe du programme STARs de la Harvard Medical School, aux États-Unis.

Mme Asante est titulaire d’un baccalauréat en arts libéraux (avec majeure en psychologie et en sociologie) de la Wesleyan University à Middletown dans le Connecticut, aux États-Unis, ainsi que d’un baccalauréat en droit et d’une maîtrise en médecine, bioéthique et droit de la santé de la University of the Witwatersrand, en Afrique du Sud.

Ressources recommandées:

  1. Article de BMJ sur la résolution de participation sociale de l’OMS https://doi.org/10.1136/bmj.q1460 (publié le 10 juillet 2024)

  2. The right to participate: An under-utilised component of the right to the highest attainable standard health https://go.shr.lc/3SeIol2 

  3. World leaders unite to embed social participation in health systems - https://www.bmj.com/content/bmj/386/bmj.q1460.full.pdf  

  4. Remuneration of African patient partners is an important tool for health justice - https://doi.org/10.1136/bmj.q2675  
A young Black woman with medium-brown skin and long, straight dark hair, worn loose with a wide black headband. She is wearing clear-framed glasses, gold drop earrings, and a cream blouse with lace detailing on the shoulders. Her expression is calm and confident, with a soft smile. The background is plain and light-coloured.

Mbali Ngobese she/her

I am a Master of Philosophy candidate in Health Systems at Stellenbosch University, building on a background in Biological Sciences and an Honours degree in Health System Science from the University of the Witwatersrand. My research focuses on advancing universal health coverage in this generation, driven by a deep commitment to equity, justice, and ethical leadership in health systems. I am passionate about bridging the gap between policy and lived experience. I have contributed to large-scale interdisciplinary projects addressing climate change, health, and gender-based violence in low-income communities, and I have presented research on the intersection of chronic disease and mental health at national scientific forums. I served as a Programme Coordinator at the 2025 UN Financing for Development Conference, and I aspire to contribute meaningfully to global health governance.

A person smiles at the camera, wearing a red scarf and dark top, with framed pictures and a calendar on the wall behind them.

Rosebud Ombura

Rosebud is located in Soweto East Nairobi County Langata constituency. She is the second born of seven children. At the age of 4.5 years, her lived experience journey began when she had a stroke and poliomyelitis at the same time. She could not walk or move and her stroke affected her right hand and right foot. Thanks to therapy, she regained mobility in her legs and hand. However, due to her stroke she still forgets easily or may take more time to respond than others.

Rosebud is a humble young stroke survivor who likes making new friends – though shy to new faces but courageous when new friends get on. She is a disability champion ready to go an extra mile for others. She wants others to know that the disability club is one that anyone can join.

Rosebud became involved in research as a stroke survivor through a coordinator, Cornelius Sayi, and madam Prisca in their sAHA group. Her interest in research is to know more about non-communicable diseases (NCDs) prevention and control, and ways to help others accept the situations they are in. She believes that when the patients are involved in research, they are able to gain courage to speak for themselves. She also feels this involvement will help patients to heal too.

She is also the proud mother of two and an orphan whose mother is a widow and is fighting arthritis.

Joab Wako, a SC member for PxP 2025

Joab Wako 

Joab Wako is the Founder and Executive Director of Transplant Education Kenya (TransplantEd), an organization dedicated to raising awareness about organ donation and transplantation in Kenya. Under his leadership, TransplantEd has reached over 70,000 people through in-person events and social media campaigns over the past eight years. The organization has also partnered with other NGO's and transplant centers to facilitate impactful community outreach programs. Joab's journey as a health advocate began after living with chronic kidney disease for ten years and receiving a life-saving kidney transplant from his older sister, Nerima, eight years ago. This transformative experience inspired his commitment to health advocacy, leading him to become a lived-experience advocate. As a kidney transplant recipient, Joab is passionate about fostering hope and building support networks for individuals facing organ failure. He remains dedicated to advocating for safe, equitable access to organ donation and transplantation and actively seeks partnerships to advance this vital mission.

References/Resources 

  1. WHO Framework for meaningful engagement: https://www.who.int/publications/i/item/9789240073074
  2. WHO Voice, agency, empowerment: https://www.who.int/publications/i/item/9789240027794

Social Media: 

All TransplantEd socials are on our Linktree below. You may share these socials with my bio. 

linktr.ee/transplantedke 

 

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