1. CAMEROON’S FIRST STEPS IN DATA SHARING AND RE-USE
Pierrette ESSAMA MEKONGO, Ph.D.,
Senior Lecturer,
University of Yaounde II
Cameroon
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

2. SUMMARY The Cameroonian’s research landscape
Data sharing and reuse in research institutions and universities
Data sharing infrastructure initiatives
Data sharing and reuse in ethics committees
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

3. The Cameroonian’s Research Landscape
Ministries:
The Ministry of Scientific Research and Innovation
The Ministry of Higher Education
The Ministry of Public Health
The Ministry of Agriculture and Rural Development
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

4. The Cameroonian’s Research Landscape
Universities
University of Bamenda, Buea, Douala, Dschang, Maroua, Ngaoundéré, Yaounde I and Yaounde II
Research institutions
National Institute of Statistics (NIS)
Agricultural Development Research Institute (IRAD)
Chantal Biya International Research Centre (CIRCB)
Biotechnology Centre (BTC)
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

5. Data Sharing and Reuse in Research Institutions and Universities
In public universities, there is no policy nor discussions on data sharing and re-use.
Researchers enter into data and material sharing agreements (DSA/MTA) in case they collaborate with other institutions nationally and internationally as an internal or external requirement of the National Ethics Committee.
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

6. Case Study of the Chantal Biya International Research Centre
There exists a Data Sharing Agreement template :
Relevant key terms:
“2. Purpose
To define the terms of the data access, exchange and utilization in relation to the research project. Specially, CIRCB will provide data collected in the Research projects titled “??????” to the ??????? to enable the statistical analysis of data collected as outlined in the study protocol. ”
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

7. Method Of Access and Transfer
“3. Access to data
Method Of Access and Transfer
Data will be collected and transferred as described in the data Management Standard Operating Procedure of the project.
Persons Having Access to Data
All persons who will have access to confidential patient data will have undertaken appropriate training in Good Clinical Laboratory Practice and information Governance, including maintaining data confidentiality. Training will be subjected to certification.”
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

8. “4. Data Use and Ownership
The planned data analyses are outlined in the study protocol. Additionally data analyses may be subjected to approval by the project steering Group presentations and publications will be circulated in draft form with at least 2 weeks’ notice. Authorship will be subjected to approval by ?????. ?????? shall be cited as the source of study design and data analyses in all reports, presentations, and scientific papers. Data shall not be released to any third parties without approval from ??????.”
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

9. “6. Right of Inspection
Both parties shall provide the independent Data Monitoring Committee of the project the right of access to the data management facilities at all reasonable times, in order to monitor and evaluate performance, compliance and/or quality assurance under this contract.”
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

10. Data Sharing Infrastructure Initiatives
Ministry of Higher Education
Ministry of Public Health
Ministry of Scientific Research and Innovation
National Institute of Statistics
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

11. Data infrastructure initiative in the Ministry of Higher Education
This Ministry is currently working to develop terms of reference to build a central server with an interface for all departments within the Ministry where databases on higher education-related research data will be available on various topics.
It will be freely accessible to all MINESUP staff but there is as of now no provision for individual researchers.
Individual researchers may be allowed to access such databases upon authorisation
It is envisaged that universities may have access points to such databases through passwords
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

12. Data infrastructure initiatives in the Ministry of Scientific Research and Innovation, the Ministry of Public Health and the National Institute of Statistics
All are currently drafting some regulations that encapsulate issues of data sharing with:
The Ministry of Health being concerned with data sharing in collaborative research; and
The National Institute of Statistics being concerned with making their data openly accessible.
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

13. Data Sharing and Reuse in Ethics Committees
The National Ethics Committee in Health Research in Cameroon requires in each case of collaborative research that Data and Material Sharing agreement be entered into before issuing clearance for research.
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

14. Case study of the National Ethics Committee in Health Research
It adopted Standard Operating Procedures for Research Ethics Committees (RECs) in Cameroon in 2012
Relevant provisions are found under the part relating to “Process of Research Protocol review, committee Meeting and oversight”
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

15. Section 10 (c) on Collaborative Partnership provides that
Standard Operating Procedures for Research Ethics Committees (RECs) in Cameroon
Section 10 (c) on Collaborative Partnership provides that
“If the research project involves more than one institution (multicentre studies) and samples are to be transferred from one institution to another, signed Material Transfer Agreement (MTA) between the sample or data provider and the recipient, and Data Sharing Agreement (DSA) between institutions must be submitted for review by REC.”
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

16. Case study of an approved DMSA between the University of Yaoundé I and Yale University
Purpose of agreement
“The Provider undertakes to provide the MATERIAL to the Recipient for a period not to exceed five (5) years as from the EFFECTIVE DATE, and hereby grants to the Recipient, which accepts such, a temporary, nonexclusive right to use the MATERIAL so that it may complete the work schedule within the framework of the Research.”
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

17. “The MATERIAL may not be used pursuant to research involving the participation of a third party without the prior and written authorization.
The MATERIAL shall not be transmitted to any and all third party other than the staff involved in implementing the work schedule, and who work directly under the authority of the manager of the recipient laboratory, in accordance with the … project. “
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

18. Rights to materials and data
All patentable and non-patentable inventions, expertise, data, findings, results, etc. concerning the materials and data which are generated during the course of the studies and/or which are generated by use of the materials and data shall be jointly owned by the partners.
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

19. “Publication of the results of the studies shall only occur in accordance with the partners. Specifically, all involved must be informed if any data, derivatives, materials, findings, results or conclusions of the studies are published (peer-reviewed or other) in any media. Publication shall be in accordance with the International Committee of Medical Journal Editors (ICMJE) Guidelines (Medical Education, 1999, 33, )”.
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

20. “All unpublished information concerning the study, will be held strictly confidential and will not be used for any purpose other than the studies (“INFORMATION”). INFORMATION will not be disclosed to any third party, unless the partners are informed and agree on the release of the information in writing. INFORMATION shall not include any information that (a) can be demonstrated was known by a partner at the time of disclosure; (b) becomes part of the public domain, except by breach of this Agreement by a partner; (c) is rightfully received by a partner from a third party without an obligation of confidence to the other partner; (d) is independently developed by a partner's personnel who have not had access to the INFORMATION or MATERIAL as demonstrated by competent written proof; or (e) is required to be disclosed to the extent necessary to comply with applicable laws or regulations. Both partner's obligations of nondisclosure of INFORMATION shall terminate five (5) years from the EFFECTIVE DATE.”
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

21. “In the event the either partner terminates this AGREEMENT, a declaration of use for the shared materials and data, as well as any derivative, results and conclusion from it, shall be negotiated in good faith by the partners. In particular the use in publications of knowledge originating, from the shared materials and data shall be clarified”.
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

22. Points to note
Provisions for data sharing in research institutions and in the Research Ethics committee are only made in view of collaborative research and not as a general requirement for the advancement of science
Data are not made freely accessible to all researchers but only to those involved in the specific research project
Most of the Data Sharing principles are incorporated in DMSA and initiatives
Data are still very confidential
Most researchers still believe they “own” data and those should no be freely shared.
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

23. Nairobi Data Sharing Principles
1. Data should be open and unrestricted.
Data should be free to the user.
Data should be informative and assessed for quality.
Data sharing should be timely.
Data should be easy to find and access.
Data should be interoperable
Data should be sustainable.
Data contributors should be given credit.
Data access should be equitable.
Data may be restricted, in exceptional cases, if adequately justified.
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

24. Belmont Forum Data Principles
Data should be:
Discoverable through catalogues and search engines
Accessible as open data by default, and made available with minimum time delay
Understandable in a way that allows researchers—including those outside the discipline of origin—to use them
Manageable and protected from loss for future use in sustainable, trustworthy repositories
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

25. Challenges
Multiplicity of research authorities/institutions which are not taking joint actions - Collaboration
Absence of a clear policy for data sharing and re-use
Lack of sound research management in institutions
Building sound databases and making them available on servers/platforms – Repositories
Availability of existing databases (NIS)
Institutionalisation of data safety and monitoring systems
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

26. Challenges
Clarifying researchers on issues of ownership/rights over data and research integrity/ethics
Quality assurance - Certification
Internet connectivity
Power supply
Funding
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

27. Perspectives Need for policy and regulations
Adoption of relevant regulations and policies in the near future in ministries (Ministry of Public Health and Ministry of Scientific Research and Innovation) and research institutions (National Institute of Statistics, Chantal Biya International Research Centre “CIRCB”)
Creation of databases servers and platforms (Ministry of Higher Education)
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

28. Benefits Participating in Open Data and Open Science
Contributing to global information infrastructure
Existing scientifically
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

29. Some References Nairobi Data Sharing Principles
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa

30. Thank you for your attention !!!
02/10/2016
Workshop on Improving Data Sharing and Re-Use, CTICC, Cape Town, South Africa