An Open Call for Creative Ideas to Improve Awareness of Data Science Health Research
Principal Investigators (PIs):
Prof Keymanthri Moodley and Associate Professor Stuart Rennie
The Research for Ethical Data Science in sub-Saharan Africa (REDSSA) Group
Steering Committee Members:
Gonasagrie (Lulu) Nair, Sharon Kling, Adetayo Emmanuel Obasa, Suzanne Day, Walter Jaoko, Keymanthri Moodley, Stuart Rennie, Cheryl Baxter, Karel Caals, Wim Delva, Neetha Shagan Morar, and Nezerith Cengiz
Organizing Committee Members:
Suzanne Day, Gonasagrie (Lulu) Nair, Adetayo Emmanuel Obasa, Karel Caals, Sharon Kling, Walter Jaoko, Stuart Rennie and Henrietta Agboje
Large volumes of health-related data are collected from various sources we use every day, including computers, smartphones, tablets, and wearable devices. Anonymised health data are also collected by medical insurance companies in the private health sector and official public health databases to design treatment and prevention strategies to address various public health issues and benefit communities. However, there is a lack of awareness among the public that this data is being collected and shared. When this data is collected from an individual it is very personal and sensitive but once anonymized as part of large data sets, it cannot easily be linked back to the individual. How should we engage with communities, using simple non-technical language, to raise awareness that sensitive individual health and location information is being collected and shared as part of a large, anonymized data set? We are seeking ideas for strategies to help improve transparency, understanding and trust in large data-driven health research for the public good.
Formats for submission:
Please submit your proposed solution as text (maximum 350 words). In your submission, please be sure to tell us about your idea for how to raise awareness among communities that sensitive individual health and location information is being collected and shared as part of large, anonymized data sets for research. Identify and describe the community for which your suggested intervention/proposal to raise awareness is intended for. Submissions will be accepted online using our submission form. Submissions will be accepted in all languages, however, if the language of the submission is not English, a translated version of the submission will also be required.
All submissions will be evaluated on a 1-10 scale (1 being lowest quality, 10 being highest quality) by three to four independent judges. Judging criteria will include the following:
- clear description of the proposed solution for raising awareness and the community for which it is designed.
- relevance of your idea to the problem of improving awareness of data science research.
- innovation of the proposed solution for raising awareness.
- feasibility of implementing the solution for improving awareness and potential for positive impact/benefit of the idea to the community for which it is intended.
We have ZAR 1000 (South African Rand) in total prizes for finalists of the open call. The submissions identified as finalists will receive a prize and will have the opportunity to work with the REDSSA team to implement the idea.
FREQUENTLY ASKED QUESTIONS
1. Who is eligible to participate in this open call?
Anyone who has current or past experience with living or working in Africa is eligible to participate. We strongly encourage submissions from adolescents, their parents, researchers, data scientists, ethicists, community organisers, and members of research ethics review boards.
2. Can people of any age participate in this open call?
Participants aged 18 and above are invited to participate in this study. This study has been approved by The Health Research Ethics Committee (HREC) of the Faculty of Medicine and Health Sciences (FMHS) at Stellenbosch University (Ethics Reference No: N22/07/084_Sub Study N22/03/028).
3. Who is organizing and supporting this open call?
The REDSSA team, which is part of Stellenbosch University's Centre for Medical Ethics and Law in collaboration with the University of North Carolina at Chapel Hill's Center for Bioethics, was successful in an application for funding for a Data Science Innovation (DSI) in Africa grant funded by the National Institutes of Health (NIH). This study is funded by the NIH DSI-Africa grant.
4. What is this open call asking me to do?
You are being asked to submit an idea in response to the following problem: there are many social, ethical, and legal challenges with data science research studies in sub-Saharan Africa. What would be a potential way to help to raise awareness about how sensitive individual health and location data is being collected and shared as part of large, anonymized data sets for research? Your ideas will help us to better engage the community on the topic of data science research.
5. Where can I submit my idea?
You can submit your idea online using our online submission form. Once you have completed the Consent form, a copy of the consent form can be downloaded.
6. What is a crowdsourcing open call?
An open call has a group of individuals solve a problem and then share exceptional solutions with the public. You can learn more about crowdsourcing open calls by clicking here.
7. Is there a limit to how many entries I can submit?
No, you can submit as many entries as you want. At the same time, be mindful that the quality of entries is more important than quantity. If you plan to submit your idea as a team or group of individuals, please avoid submitting multiple entries from members of the same team, and instead select a single individual to submit an entry on behalf of the team.
8. What is the deadline for submitting my idea?
The deadline for submissions is 30 April 2023.
9. What are the evaluation criteria for submissions?
Submissions will be evaluated based on the following criteria:
- clear description of the proposed solution.
- relevance to improving awareness of data science research
- innovation of the proposed solution.
- feasibility of implementing the solution for improving awareness and potential for positive impact/benefit of the idea to the community-based in Africa.
10. How will I be contacted if I am a finalist?
Finalists will be notified of their selection through email in June/July 2023 and will be advertised on the REDSSA web page.
11. Do I have to provide my name and personal information in order to participate in the open call?
With your submission to the open call, you will also be asked to provide your name and contact information. Without your permission, neither your name nor contact information will be shared with anyone outside of the open call Steering Committee or Organizing Committee. We also understand that some people may want to participate in the open call but are not comfortable giving their names and contact information. It is entirely optional to provide this information: you can still submit an idea to the open call even if you do not want to provide your name or contact information. If you do not provide contact information, your submission will still be evaluated and included in the open call results; however, please be aware that without contact information, we will not be able to contact you.