e-MOPs

Ethics & Engagement across the Wellcome Trust Major Overseas Programmes

Featured Project: Perspectives of research stakeholders on sharing of unanonymised participant information between research studies

Mackwellings Phiri is a 2017 Global Health Bioethics Network Fellow.

Biosketch:

Mackwellings Phiri has worked in health research since 2005. He worked with Karonga Prevention Study from 2005 to 2008, Malawi Liverpool Wellcome Trust (MLW) from 2009 to 2012, and the University of Malawi from 2012 to 2014. Since returning to MLW in 2014, he has been directing his experience towards understanding and improving community engagement through qualitative research. In 2015, he conducted a Wellcome Trust funded project, looking at trust and the role of community volunteers in health research. In 2016, he was part of a team conducting research on engagement with a flu vaccine trial, looking partly at people’s reasons for participating or refusing. He is now working on another WT funded study about data sharing, which explores research stakeholders’ perspectives about research studies sharing participants’ data that contains identification details.

Project Title: Perspectives of research stakeholders on sharing of unanonymised participant information between research studies

The project looks at sharing of unanonymised data. The primary research objective of this project is to understand what research stakeholders’ perspectives are about research studies sharing and accessing participants’ data that contains identification details. The study will follow a qualitative design and data will be collected using semi-structured interviews and focus group discussions. Purposive sampling will be used to recruit study participants. Study participants will include researchers, ethics board members, Community Advisory Group members, and men and women who have participated in research. The project will be implemented in locations that have been under research by Malawi Liverpool Wellcome Trust for several years, where people will have experience of having personal information collected and be in a better position to consider implications of data sharing. The collected data will be coded both deductively and inductively using thematic analysis to develop a coding framework, which will then be used to code the rest of the data. New emerging themes will also be coded and added to the developed framework. A matrix framework will also be used to compare views between different groups. Ethical approval for the project will be obtained from the College of Medicine Research Ethics committee (COMREC).

Comment by Michael Parker on February 2, 2017 at 9:01

HI Mack,

Congratulations on your bursary! It is a really exciting and important project and I'm looking forward to hearing more about it as it progresses.

Best wishes

Mike

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