e-MOPs

Ethics & Engagement across the Wellcome Trust Major Overseas Programmes

Engaging communities about Biobanking: Developing and Evaluating an animation video to engage the lay public

Jane Kahindi is a 2019 GHBN Bursary Fellow

Biosketch:

Jane Kahindi Kalume is an Assistant Research officer at the KEMRI-Wellcome Trust Research Programme in Kenya. She joined the Programme immediately after her O-level education in 2003 as a junior fieldworker and progressed quickly to senior fieldworker. She holds a BSc Degree in Environmental studies (Community Development). Since March 2018, Jane is an Assistant Research Officer on the Biobank project under the Health Systems and Research Ethics department. She is enthusiastic to learn about ethical issues around sharing of samples beyond primary research, and how to engage communities and lay publics about biobanking.

Project outline: Engaging communities about Biobanking: Developing and Evaluating an animation video to engage the lay public


Biobanks are organized collections of human biological specimen with associated personal information for biomedical/health research. Biobanking involves the storage and sharing of samples and pseudo-anonymized-data. Explaining the purpose and practices of biobanking to lay communities contributing samples is ethically important, but it’s complex since biobanking is an uncommon practice in much of Sub-Saharan Africa. In addition, there are ethical issues emerging in the sharing and shipping of samples, which need to be articulated and addressed for biobanking to be acceptable. Given its complexities, it is important that innovative engagement approaches are used. We aim to use an animation video to engage communities about biobanks and elicit their views about key considerations for biobanking in LMIC.


We intend to use a participatory approach in developing a 10-minute animation video and evaluating its effectiveness in engaging communities about biobanking. Evaluation will involve qualitative and quantitative approaches where data collection will include documentation of the process of developing the animation video, observations, Focus Group Discussions, In-Depth Interviews, pre- and post-surveys with a range of stakeholders including community members. The animation video will be refined after incorporating community feedback and further used in community engagement on biobanking. It will also be shared widely in MESH, GHBN, and H3Africa networks among others.

Update (April/May 2020)

We have currently been doing well in our study implementation however the COVID-19 has a little bit affected our study plan. We were organizing a one week animation development training by a trainer from the Global health network which was to be held from 30th March to 3rd April 2020. The COVID-19 epidemic has led to the cancellation of the training until later in the year. This would call for study time extension as we are not going to be able to complete the study on 31st may 2020 as planned.

Detailed description of current situation, projected activities and timelines for the animation project

Covid19 situation in Kenya

The 1st case of COVID19 in Kenya was announced in 13rd March 2020. Immediately the Government issued broad directives that involved closing of all schools and learning institutions, social distancing, hand hygiene, restrictions on travels and working from home for non-essential services. Kilifi was immediately identified as hotspots as a political figure who had travelled outside the country was found to be COVID-19 and had not self-quarantined but as was mandatory. Ten COVID-19 positive cases in Kilifi were immediately isolated; our Research Programme went immediately into lock down (as it is a testing Center) and since then we are working from home. All research activities were stopped, including the animation video project; and only essential workers – those working in the hospital wards and in the labs – are permitted to go to work, with permission from Government Ministries. This has stalled the animation project, and we are not sure when these restrictions will be uplifted. Below we provide an overview of what we had accomplished by the time of lockdown, progress we have made while working from home and projected timeline for the remaining work, recognizing uncertainty on when we might re-open.

Progress of the animation project

  • We held a one-day brainstorming session with researchers in the Programme and Community Engagement staff (about 10 staff) to discuss the animation video (acceptability), feedback on concepts we wish to include, features of biobank and social-cultural issues to consider. We also discussed the form of animation video that might be acceptable to community (all animation, or animation plus film footage). As an output of this work several storyboards were developed, that we reviewed and combined elements to form the storyboard of the animation video; and to inform the script development.
  • We linked up with the Global Health Network (via Trudie) who provided a consultant based in Oxford (Juxhin) to work with and to train us on the animation video.
  • With advice from the consultant, the engagement staff and researchers, we concluded that a combination of film footage and animation, primarily in Kiswahili but with English sub-titles will be developed (about 10 mins long). A shorter clip (3-5 mins) for the wider audience will be developed to be shared in public websites.
  • We have since developed a draft script, the story board and shot some of the film footage.
  • An initial animation video (draft) of some of the biobank concepts have been developed through an iterative process of feedback from the project team and consultant.
  • The next stages would involve community members [majority of the work] but we were not able proceed with these due to restrictions in the wake of covid19.

Pending project activities

  • Initial consultation with community members on the acceptability of the animation video that is being developed [at this point, we have developed a very short animation clip which we intend to show to a few community members and get initial views/feedback]
  • Identifying community members to be involved in the film footage
  • Training of our staff on animation video developed
  • Developing the animation video
  • Evaluating the animation video

 

Key considerations moving forward and projected timelines for the project

We suspect that we might be in lock down for the next 3 months (more or less); and that should these be lifted then exiting the lock downs will use a staggered approach. Thus, while it might be possible to continue with activities that only involve staff in the next 4-6 months, activities that involve bringing community members together may not be possible (unless these are in extremely low numbers). Thus, moving forward, we think that

  • It might be possible to conduct staff training, which had been planned as a face-to-face training. In case travel restrictions and entry to country remain (since Juxhin is based in Oxford), then we will explore whether a) Juxhin can train the team remotely or b) we may have to look for Kenya-based animator [our experience in finding one have not been great as they are very expensive]
  • Activities that involve community members: while film footage might be possible (as it will involve about 3-4 people), other activities that involve community members might be on hold for a while. This includes the community engagement meetings where we were to evaluate the effectiveness of the video.
  • Thus, if in next 4-6 months’ time it would be clearer the forms of community engagement that might be feasible, considering that a 2nd wave of pandemic is anticipated. By then we will be making decisions on a) whether to use online and mobile platforms to engage communities about biobanking using the animation video; b) how we might evaluate its usefulness/effectiveness c) whether we will be permitted to bring a few community members to the Centre, and therefore whether we can continue with the activities as had been planned.

Currently, we have submitted an amendment to the ERC of the protocol that this animation video is nested within,seeking permission to use the various communication platforms to engage community and research stakeholders and evaluate the engagement and use of these platforms. The evaluation of the animation video will inform on the usefulness of these platforms.

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