RESEARCH PROJECTS

1. Multimorbidity in the Western Cape
The focus of this project is the management, integration and analysis of routine health data
from health care clients attending government health facilities in the Western Cape.

1.1  Establishing a virtual population cohort using routine health data for epidemiological analyses Nature and purpose:
We are analysing anonymised and perturbed routine health data from a virtual cohort of all health care clients who attended any government health facility in the Khayelitsha sub-district in Cape Town during 2016 and 2017. Analysis of these data provides insights into multimorbidity in this population group that suffers from a high burden of both infectious and non- communicable diseases. In addition, we have continued to work in collaboration with the Provincial Health Data Centre (PHDC) at the Western Cape Department of Health in epidemiological and service-delivery projects working with routine health data from the Western Cape.

Researchers: Richard Osei-Yeboah, Tsaone Tamuhla

Outputs in the past 12 months: COVID-19 among adults living with HIV: Correlates of mortality in a general population in a resource-limited setting. medRxiv Preprint November 4, 2022. Kassanjee R, Davies MA, Ngwenya O, Osei-Yeboah R, Jacobs T, Morden E, Timmerman V, Britz S, Mendelson M, Taljaard J, Riou J, Boulle A, Tiffin N, Zinyakatira N.

Future Directions: Ongoing research in preparation for publication includes the use of longitudinal dispensing data to define complex phenotypes relating to persistence and adherence to diabetes medication (Tsaone Tamuhla).

Outputs in the past 12 months: Tamuhla T, Tiffin N, Allie T. An e-consent framework for tiered informed consent for human genomic research in the global south, implemented as a REDCap template. BMC Med Ethics. 2022 Nov 24;23(1):119. doi: 10.1186/s12910-022-
00860-2.

Multimorbidity Research in Sub-Saharan Africa: A Regional Retreat. Malawi-Liverpool

Wellcome Trust Clinical Research Programme, Blantyre, Malawi. 22nd – 24th June 2022.

Nicki Tiffin, Talk: Exploring synergies between the health service and the research ecosystem: pragmatic multimorbidity research design

Tsaone Tamuhla, Talk:  Piloting the creation of a genotyped virtual cohort.

Future Directions: A proof-of-concept pilot project is ongoing to establish the analysis pipeline with an appropriate informed consent process, collection of buccal swabs and preparation of high quality DNA sample, generation and analysis of genotype data, and linkage to routine health data for phenotype definition (Tsaone Tamuhla). In addition we will be building infrastructure to ensure that actionable genetic findings from these studies can be appropriately returned to the Western Cape Department of Health to inform evidence-based care.

1.3 Optimising data linkage of African health client data: 
Nature and purpose:
When integrating individualised data from a variety of sources, different linkage algorithms can be used to ensure the most accurate linkage and deduplication of records that originate from the same individual. Most of these algorithms, however, have been developed using Euro-centric datasets and do not necessarily perform as well in African contexts, and we are working on a systematic approach to improve data linkage for routine health data. In 2022 we completed a descriptive analysis of the current iteration of the linkage algorithm at the PHCD at the Western Cape Department of Health.

Researcher: Themba Mutemaringa

Collaborators: Andrew Boulle, Alexa Heekes, Western Cape Department of Health

Outputs in the past 12 months:
International Population Data Linkage Network Conference, Edinburgh, United Kingdom, 7-9 September 2022. Poster and Conference Proceedings: Mutemaringa, Themba & Heekes, Alexa & Boulle, Andrew & Tiffin, Nicki. (2022). Record linkage for Routinely Collected Health Data in an African Health Information Exchange. International Journal of Population Data Science. 7. 10.23889/ijpds.v7i3.2022.

In Press: Record linkage for routinely collected health data in an African health information exchange. Mutemaringa et al., International Journal of Population Data Science, 2022.

Future Directions: In this project, Themba will continue to lead the validation of existing linkage and de-duplication algorithms, and will develop and test new methodologies and algorithms to best achieve de-duplication and data linkage. In addition, he is working on a thorough review of the governance protocols and ethical requirements for this ongoing work using routine health data at the PHDC.

2. Facilitating ethical and equitable sharing of African data and biospecimens: the African Data and Biospecimen Exchange – ADBEx Nature and purpose:
Towards the end of 2021 I established a programme, funded by the Calestous Juma fellowship from the Bill & Melinda Gates Foundation,  to build an online platform to facilitate ethical and equitable secondary sharing of African data and biospecimen resources. The query-able platform will store meta-data about sample and data collections, submitted by researchers who hold those resources, and will enable direct sharing partnerships to be established between resource providers and resource consumers without centralisation of
samples or data. It will also provide online infrastructure for drawing up and recording data- sharing, benefit-sharing and collaborative agreements as well as building a repository of data and biospecimen guidelines and governance resources.

Researchers: Nicki Tiffin, Eddie Lulamba, Tsaone Tamuhla.

Collaborators: Hominum Global, www.hominum.global – User Interface and Software Specification and  Development

Outputs in the past 12 months: Technical specification for development of the ADBEx platform. In addition, an initiative by the Calestous Juma Fellows programme made it possible for Tsaone to attend the B&MGF Grand Challenges meeting with me in Brussels in September. This was a great opportunity to see other similar projects, and to present the ADBEx project.

Posters:
GA4GH 10th Plenary Meeting, Barcelona, September 2022: Poster presentation: Tamuhla T, Lulamba E, Babajide A, Tiffin N.  African Data and Biospecimen Exchange (ADBEx) – a platform to facilitate equitable and ethical sharing of African data and biospecimens.

B&MGF Grand Challenges Meeting, Brussels, October 2022: Poster presentation: Tamuhla
T, Lulamba E, Babajide A, Tiffin N.  African Data and Biospecimen Exchange (ADBEx) – a
platform to facilitate equitable and ethical sharing of African data and biospecimens.

Future Directions: In year 2 of this programme, the development of the platform will commence, guided by the technical and front end. Two stakeholder workshops will be hold, engaging with researchers and other stakeholders working with human health genomics resources (workshop 1) and pathogen genomics resources (workshop 2).

The Calestous Juma Fellowship

https://gcgh.grandchallenges.org/article/nicki-tiffin 

In November 2021 the Bill & Melinda Gates Foundation launched the Calestous Juma Fellowship program for scientists permanently located at African research organisations. Nicki Tiffin was one of fourteen recipients of these fellowships, and is participating in a series of leadership trainings, networking opportunities and skills development as part of this program.

In 2022, she participated in leadership and communications training as well as participating in the B&MGF Grand Challenges meeting in Brussels. In addition she launched her own research project funded by this fellowship.

3. Ethics and governance to promote ethical and equitable health research in Africa

Nature and purpose:
In order to undertake ethical research in Africa and other regions of the global South, there are multiple considerations around risks, benefits, informed consent and equitable research. We explore different ways to better do research and to ensure that health research in Africa is ethical and equitable through the development of tools and frameworks. I also participate in multiple ethics and governance working groups of international consortia including PHA4GE (Chair: Ethics and Data Sharing Working Group), ICDA (co-Lead: Global Equity Working Group) and IHCC (co-Chair: Systems and Policy Working Group). I have continued to lead the Ethics Working Group Forum, which brings together ELSI working groups from the many different large health genomics research networks and consortia in order to meet and share information about their activities, challenges and resources.

Outputs in the past 12 months:

Peer reviewed publication: Bedeker A, Nichols M, Allie T for the PHA4GE Ethics and Data-Sharing Working Group, et al. A framework for the promotion of ethical benefit sharing in health research BMJ Global Health 2022;7:e008096.

This work has also been referenced in the South African national press. Why South Africa needs a national Data Transfer Agreement for health research
IN: Daily Maverick
Published: 19 June 2022
By: Mahomed et al.

https://www.dailymaverick.co.za/article/2022-06-19-why-south-africa-needs-a-national-data-transfer-agreement-for-health-research/

Future Directions:

Ongoing projects, with manuscripts in preparation include:

• A risk analysis framework for genomic health research
• A systematic review on global equity practices in human genomics research in Africa
• Development of a Global Equity standard (ICDA) for monitoring and evaluation of
  global equity practices in international networks and consortia