Patients as Partners in Sickle Cell Disease Research in Africa: A Framework for Equitable Patient-Engaged Health Research
The SCD-PAPIR Framework provides a contextually grounded model for patient-engaged research in Africa and contributes to efforts to decolonise health research by positioning patients as co-creators of knowledge, and not merely a data source. The effective implementation of the framework will require investment in institutionalising PAPIR in SCD research. Future work should focus on designing implementation toolkits, developing PPI training modules for researchers and patient advocates, and adapting the framework to other health conditions.
Authors
- Eunice Owino (ORCID: https://orcid.org/0000-0001-6079-1797)
- Ambroise Wonkam (ORCID: https://orcid.org/0000-0003-1420-9051)
- Léon Tshilolo (ORCID: https://orcid.org/0000-0002-6318-0227)
- Hilda Tutuba (ORCID: https://orcid.org/0000-0001-9869-073X)
- Naz Fathima Raj Mohamed
- Paul Mdliva
- Nchangwi Syntia Munung (ORCID: https://orcid.org/0000-0003-1498-3602)
- Nabeelah Peerbhai
- Maya Sabatello (ORCID: https://orcid.org/0000-0003-4444-5389)
- Julie Makani (ORCID: https://orcid.org/0000-0002-4801-6250)
- Patience Kuona (ORCID: https://orcid.org/0000-0001-7693-7607)
- Stephanie L. Anderson
- Victoria Nembaware (ORCID: https://orcid.org/0000-0001-7966-4042)
- Emmy Mwita
- Marsha Treadwell (ORCID: https://orcid.org/0000-0003-0521-1846)
- Rissy M. Wesonga
- Lawrence Osei‐Tutu
- Alaa Hassan Said
- Emmanuel Okocha
- J Bwalya
- Arrey Echi Agbor-Ndakaw
- Ayuk Anne Chantal
- Blessing Inegbedion
- Eseza Kironde-Hall
- Fatoumata Togola
- Grajevis Bakatukanda
- Naana Abena Ohemeng-Tinyase
- Ivy Twum
- Ketty Chunga Besa
- Molyn Chima
- Nakunja Ruth Mukuubi
- Sarah Matondo Masamba
- Shadiah Nassanga
- Twelusiwe Kayange
- Cynthia Changafu
- Solange Mela
- Alieu Badara W. Sambou
Institutions
- Johns Hopkins University (US)
- University of Zimbabwe (ZW)
- Muhimbili University of Health and Allied Sciences (TZ)
- University of Cape Town (ZA)
- University of the Gambia (GM)
- University of California, San Francisco (US)
- Nnamdi Azikiwe University (NG)
- Columbia University Irving Medical Center (US)
- Komfo Anokye Teaching Hospital (GH)
- Johns Hopkins Medicine (US)
- University of Mbuji Mayi (CD)
- Cal Humanities (US)
- MRC Unit the Gambia (GM)
- Research ICT Africa (ZA)
- Small Industries Development Organisation (TZ)
- National Institute of Biomedical Research (CD)
- National HIV/AIDS/STI/TB Council (ZM)
- University of San Francisco (US)
Publication Details
- Journal
- Patient
- Published
- 2025-09-28
- DOI
- https://doi.org/10.1007/s40271-025-00772-4
- Citations
- 1
- Primary Topic
- Mental Health and Patient Involvement
- Type
- article
- Field-Weighted Citation Impact
- 2.82
Funders
- University of Cape Town
- National Human Genome Research Institute