Leonard E.G. Mboera

1. The management of health and biomedical data in Tanzania: Need for a national scientific data policy Leonard E.G. Mboera Directorate of Information Technology, National Institute for Medical Research, Dar es Salaam, Tanzania

2. Contents of Presentation • Background • African Region Initiatives • Data transfer and sharing in Tanzania • The situation with a national biomedical/scientific data policy in Tanzania • Guiding principles for data transfer agreements in Tanzania • Unique access to data • Permission to publish • Policy on Research Data/Information in Tanzania • Key questions

3. Background • In view of increased collaborative health research activities by institutions within and between countries data and other important information are transferred or exchanged for the purpose of completing or advancing the study elsewhere. • A number of developed countries have in place national policies and programmes for data management and access • This is either weak or non-existence in a large number of developing countries

4. Objectives • To analyse and highlight the situation as regards to health and biomedical data management and policy in Tanzania. • Discuss opportunities for facilitating data sharing between institutions and between countries. • Recommend on the way forward

5. African Regional Initiatives • The Algiers Declaration (2008) aims at improving: • the availability of relevant and timely health information • management of health information through better analysis and interpretation of data; • the availability of relevant, ethical and timely research evidence • the use of evidence by policy-makers and decision-makers; • improving dissemination and sharing of information, evidence and knowledge • access to global health information, and • the use of information and communication technologies

6. Current situation in Tanzania • Tanzania has developed guides in data transfer, but there is no policy on research data sharing. • There are various specific barriers to the access and sharing of scientific data collected by researchers using either public or donor funding. • Such obstacles include scientific and technical; institutional and management; economic and financial; legal and policy; and normative and socio-cultural aspects.

7. Situation in TZ: Data sharing • The mandate to regulate health research and data that accrues from the research is vested on the National Institute for Medical Research (NIMR). The Parliamentary Act No. 23 of 1979 mandates the National Institute for Medical Research to: • to establish a system of the registration of, and to register the findings of medical research carried out within Tanzania, and promote the practical application of those findings for the purpose of improving or advancing the health and general welfare of the people of Tanzania; and • to establish and operate systems of documentation and dissemination of information on any aspect of the medical research carried out by or on behalf of the institute

8. Management of health research data in Tanzania • Researchers in Tanzania, like in other developing countries, lack the norms and traditions of open data sharing for collaborative research. • Although government does not actively protect such data, it lacks lack policies that provide guidance or identify responsibilities for the researchers in making research data available for others to use. • Moreover, Tanzania does not have central data center or digital repository in place that researchers can submit their data for use by others.

9. Research Data Transfer in Tanzania • Tanzania has in 2010 introduced a procedure for data transfer between Tanzanian and foreign institutions. • The DTA is used as the only legal document by institutions in Tanzania to regulate the uses of data they provide to specific research projects within and outside the country. • The DTA also provides opportunity for institutions to claim co-ownership of the improvements made from data the recipient has acquired. • Upon approval of the DTA the agreement becomes valid and the recipient is granted unique access for a period of time depending on the duration of the project; after which the data will be placed in the public domain.

10. Permission to Publish • It is mandatory to seek a permission to publish for any health research carried out in Tanzania. The permission is granted by the NIMR •  This information is provide in the ethical approval certificate

11. National health research data repository • The National Institute for Medical Research in a process of establishing a web-based National Health Research Data Repository (NHRDR). • The primary purpose of the NHRDR is to provide a central storage database for all health research conducted in Tanzania. • The process has however, encountered a number of challenges, including financial, human resources and well as infrastructure. • To start with, NIMR will soon establish a central data repository for that collect and store research data from its Research Centres and Stations.

12. CONCLUSION • With an increase in the need for data and information sharing globally, it is the right time that Tanzania develop and implement a national research data policy. • This policy among other things, will oversee the generation, storage, transfer and use of research data among the local and between local and international users of research findings. • A formal mechanism need to be established to govern the accessibility and use of created research data.