In Their Own Voices: Vulnerabilities & Abilities of Women, Children, & Families in Health Research
Lead Research Organisation:
University of Oxford
Department Name: UNLISTED
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Technical Summary
Efforts surrounding the Millennium Development and Sustainable Development Goals have brought much needed attention to lessening the burden of disease shouldered by women and children, which is most severe in low-income countries. Lasting advances in women’s and children’s health will require improvement of health systems, environment, education, improved access to effective health
interventions, including better ways to deliver care in rural, low-income settings. Innovations in each of these areas will require clinical, social science and implementation research. However, many of these women and children are considered to be vulnerable to harms, coercion or exploitation, making inclusion in even potentially beneficial research ethically concerning. While significant strides have been made to develop research ethics guidance for those working with vulnerable populations, critical gaps remain in our understanding of specific vulnerabilities in context, accompanying abilities, the role of social support in mitigating vulnerability, and individuals’ own perceptions of vulnerabilities
and abilities. To address these gaps and to improve support and guidance for responsible research with women, children and families, we propose an interdisciplinary collaborative study with investigators in maternal-child health, infectious disease, and social science research across three international sites in the Wellcome Trust Major Overseas Programmes: Kenya, South Africa and
Thailand.
interventions, including better ways to deliver care in rural, low-income settings. Innovations in each of these areas will require clinical, social science and implementation research. However, many of these women and children are considered to be vulnerable to harms, coercion or exploitation, making inclusion in even potentially beneficial research ethically concerning. While significant strides have been made to develop research ethics guidance for those working with vulnerable populations, critical gaps remain in our understanding of specific vulnerabilities in context, accompanying abilities, the role of social support in mitigating vulnerability, and individuals’ own perceptions of vulnerabilities
and abilities. To address these gaps and to improve support and guidance for responsible research with women, children and families, we propose an interdisciplinary collaborative study with investigators in maternal-child health, infectious disease, and social science research across three international sites in the Wellcome Trust Major Overseas Programmes: Kenya, South Africa and
Thailand.
People |
ORCID iD |
Publications
Zakayo SM
(2021)
Vulnerability, Agency, and the Research Encounter: Family Members' Experiences and Perceptions of Participating in an Observational Clinical Study in Kenya.
in Journal of empirical research on human research ethics : JERHRE
Zakayo S
(2020)
Vulnerability and agency across treatment-seeking journeys for acutely ill children: how family members navigate complex healthcare before, during and after hospitalisation in a rural Kenyan setting
in International Journal for Equity in Health
Uddin M
(2021)
Gender-related influences on adherence to advice and treatment-seeking guidance for infants and young children post-hospital discharge in Bangladesh
in International Journal for Equity in Health
Nkosi B
(2020)
Managing ancillary care in resource-constrained settings: Dilemmas faced by frontline HIV prevention researchers in a rural area in South Africa.
in International health
Nkosi B
(2022)
Putting research ethics in context: Rethinking vulnerability and agency within a research ethics case study on HIV prevention for young girls in South Africa
in SSM - Qualitative Research in Health
Ngure K
(2021)
Perceived Social Influences on Women's Decisions to use Medications not Studied in Pregnancy. A Qualitative Ethical Analysis of Preexposure Prophylaxis Implementation Research in Kenya.
in Journal of empirical research on human research ethics : JERHRE
Ngure K
(2017)
The role of male partners in women's participation in research during pregnancy: a case study from the partners demonstration project.
in Reproductive health
Muraya K
(2021)
Applying a gender lens to understand pathways through care for acutely ill young children in Kenyan urban informal settlements.
in International journal for equity in health
Molyneux S
(2021)
Model for developing context-sensitive responses to vulnerability in research: managing ethical dilemmas faced by frontline research staff in Kenya.
in BMJ global health
| Title | In their own voices: Health research on the Thai-Myanmar Border |
| Description | Our study team at MORU/SMRU in Thailand conducted a participatory video workshop with the Community Advisory Board which oversees and approves all research being conducted along the border region. Members of the CAB are largely from the Karen Burmese migrant communities along the border and in the refugee camps. They are lay members, although several have participated in research themselves. The purpose of the workshop was to co-create a video with the CAB, sharing through narrated drawings and interviews, their experiences and views of research, ethical issues that arise, how fellow community members think about some of the benefits and challenges of participating in research. They talked quite a bit about challenging journeys to reach the research clinics, hidden costs faced by participants and families, but also about the significant benefits brought by medical knowledge. The film has been presented at conferences and is in its final editing stages before being made available online. We will share the link in our next report. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2019 |
| Impact | We screened the short film at Suphak Nosten's photo exhibition in Bangkok and it was well received for showing a very different perspective of the role of research in a low resource setting and with vulnerable populations. We will track feedback and impact once we finish final edits and launch on a Vimeo or YouTube in the next few months. |
| Title | On the frontline: meeting ethical challenges in global health research |
| Description | This short film is intended to engage: Research funders, research ethics committees, research investigators and leads, directors -- those who might not be aware of frontline researcher experiences when working in contexts of severe need and structural vulnerabilities. The themes track the experiences and ethical questions raised at the frontlines of research. The production of this film was led by Alun Davies (KEMRI). Dr Davies worked with REACH team members across all sites to co-develop a script summarizing the entire research programme, its key findings and main points of learning. The script also provided a guideline for gathering the visual content (photographs and video clips) for the film. Many of the images in On the frontline were taken during research activities at the sites while others were captured specifically for the film. Informed consent or assent has been obtained for the use of all visual media. COVID-19 restrictions were adhered to for images captured during periods of lockdown in each setting. It was agreed among the REACH team members at all sites that the principal audiences for On the frontline would be researchers and funders, with an aim of engaging them in the need for change in research ethics policy and practice. A first draft of the film was presented at the Health Systems Global session on 'Everyday ethics and justice considerations for Health Policy and Systems Research stakeholders' held online on the 10th of February (see AHRI). The same version was shared with 55 participants - including funders, human rights experts and research policy makers - at the REACH Virtual Workshop on the 12th of February Due to COVID, we've had to adapt and use less in person footage. We are currently in the process of editing the final cut and may try to add a few in person interviews if it is safe to do so during our no-cost extension period through Sept 2021. We will update this entry with a link at that time. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2021 |
| Impact | This film is currently being edited and has only been shared at our workshop, where it was well received. We will update this entry before the close of our project in Sept 2021 and include a link for viewing/sharing. |
| Title | Photography series: In Their Own Voices: ?Vulnerabilities & Abilities of Women & Families in Health Research on the Thai-Myanmar border |
| Description | Burmese photographer, Suphak Nosten, completed a photographic series depicting the daily lives, homes, and journeys of the families along the Thai-Myanmar border who participate in research studies being conducted by Mahidol University and the Shoklo Malaria Research Unit (SMRU) in Mae Sot, Thailand. The photos also show the field researchers and clinical researchers engaged with participants/patients, with striking emotion and human connection. Suphak also documented the difficult journeys that participants, their families and field researchers take across the border between their homes in rural Myanmar and the series of research clinics along the border. These journeys are especially harrowing during the rainy season. Because Suphak is herself a community health worker on our team, and native Karen Burmese, each photo includes detailed stories about the situation of individuals, families and research staff depicted. We sponsored two public exhibitions of Suphak's photos, the first at an art space in Bangkok, and the second at a clinic near the Thai-Myanmar border, where our research ethics study was based. These events reached more than 1,300 people and are described in detail in the public engagement section. The photos and time engaging with Suphak and other team members about the stories linked with the photos, offered an opportunity for members of the public to engage on the themes of research ethics, the role of ethics in addressing migrant disease burden, structural vulnerabilities of e.g., climate change and displacement, as well as resilience and hope. An long-term online gallery has been created on our Oxford-based project website and shared widely via social media. The galleries may be viewed here: https://www.ethox.ox.ac.uk/Our-research/major-programmes/reach/gallery |
| Type Of Art | Artistic/Creative Exhibition |
| Year Produced | 2019 |
| Impact | Please see the public engagement entries for detailed descriptions of these events and impact. We conducted an evaluation which was very positive. Members of the public appreciated "how the series put a human face to the daily lives of those living at the border, including clinical and field researchers." Participants commented on the "power of the photos to show the daily workings of malaria prevention research" and "the dedication of clinical staff researchers as clinicians and fellow humans". |
| URL | https://www.ethox.ox.ac.uk/Our-research/major-programmes/reach/gallery |
| Description | Findings have been taken up via hybrid academic-community organizations and communities where global health research is taking place, including the Talk Provence Community Advisory Board in Mae Sot, Thailand, the African Health Research Institute's affiliated Community Advisory Boards, as well as by those engaged in government policy on priority setting in global health research at the National Institutes of Health in the United States, PATH in Seattle, Washington, and World Health Organization in Geneva. |
| First Year Of Impact | 2021 |
| Sector | Education |
| Impact Types | Policy & public services |
| Description | Advisor to WHO COVID-19 research ethics |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | In response to the COVID-19 pandemic the World Health Organisation formed an ad hoc expert research ethics committee to perform rapid, full reviews of COVID-19 international research proposals. We have had an opportunity to inform the substantive and procedural ethics oversight at WHO throughout the pandemic. |
| Description | Safeguarding expert advisory group, Developing guidance for safeguarding in international development research, UK Collaborative on Development Research |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| URL | https://www.ukcdr.org.uk/what-we-do/our-work/safeguarding/ |
| Description | Building the evidence base for appropriate care of the sick, undernourished child in limited resource settings. |
| Amount | £4,145,000 (GBP) |
| Organisation | Bill and Melinda Gates Foundation |
| Sector | Charity/Non Profit |
| Country | United States |
| Start | 06/2017 |
| Description | Equity & difference: Deconstructing gender in health research for women |
| Amount | £701,588 (GBP) |
| Funding ID | 221283/Z/20/Z |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2021 |
| End | 01/2025 |
| Description | REACH: Resilience, Empowerment and Advocacy in Women's and Children's Health Research - Public engagement award |
| Amount | £154,000 (GBP) |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2018 |
| End | 09/2020 |
| Title | Day-to-day dilemmas: An ethical guide for health systems researchers |
| Description | This is an online set of tools designed for health systems researchers in global health to aid in proactively addressing practical ethical dilemmas in research, especially research in low-income settings, involving often vulnerable participants. It was co-designed and co-sponsored between the Research in Gender and Ethics (RiNGs) network, Health Systems Global, RESYST, and our Wellcome team from In their own voices (our study name is REACH). |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2019 |
| Provided To Others? | Yes |
| Impact | We have just launched the tool so do not have evaluation data to share as yet, but we have presented materials at the Health Systems Global meeting in 2019 and received very positive feedback about the usefulness of the tools for frontline research ethics. |
| URL | http://ethicsresource.ringsgenderresearch.org |
| Description | African Health Research Institute (AHRI) |
| Organisation | Africa Health Research Institute |
| Country | South Africa |
| Sector | Charity/Non Profit |
| PI Contribution | We have contracted with AHRI to carry out two qualitative case studies in KwaZulu Natal, South Africa in partnership with the social science team at AHRI. |
| Collaborator Contribution | We are just now in the process of staffing the research position at AHRI so research at the site has not yet begun. |
| Impact | The research will begin in early summer 2017. |
| Start Year | 2016 |
| Description | Kenya Medical Research Institute (KEMRI) |
| Organisation | Kenyan Institute for Medical Research (KEMRI) |
| Country | Kenya |
| Sector | Public |
| PI Contribution | As part of our collaborative study REACH, we have contracted with the social science and ethics team at KEMRI -- a research institute in the Oxford major overseas programme in Kilifi, Kenya -- to carry out two qualitative case studies in Kilifi. The grant is supporting local research staff in the social sciences. |
| Collaborator Contribution | Staff have been hired and the two qualitative case studies have been designed and are in the process of ethics approval. |
| Impact | Staff have been hired and the two qualitative case studies have been designed and are in the process of ethics approval. Recruitment has not yet begun, so we do not have data to report. |
| Start Year | 2016 |
| Description | MORU - Mahidol University Thailand |
| Organisation | Wellcome Trust |
| Department | Mahidol University-Oxford Tropical Medicine Research Programme |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have partnered with the social science and bioethics team at MORU on this collaborative research ethics study. The grant is supporting local research staff in the social sciences. |
| Collaborator Contribution | Our partners have staffed the main project staff positions and have begun working on tools and protocol for submission to the ethics boards. We have worked together on community and participant engagement. |
| Impact | We do not yet have ethics approval for the case studies being done at MORU and SMRU in Mae Sot so we do not yet have data to report. |
| Start Year | 2016 |
| Description | PATH |
| Organisation | PATH |
| Country | Global |
| Sector | Charity/Non Profit |
| PI Contribution | We have partnered with the MNCHN and Malaria teams at PATH, a global health NGO in Seattle, Washington to explore ethical issues related to implementation and evaluation science in these two programmes. We have shared and implemented our integrated ethics tools with these teams to facilitate dialogue and problem-solving around difficult ethical challenges in their research. |
| Collaborator Contribution | Our work in empirical global health ethics would not be possible without trusting scientific partnerships such as this one. The scientific teams invited us to participate in scientific discussions with live ethical challenges with an eye to improving ethical practice and informing policy. |
| Impact | Work with both teams has led to several publications, an international workshop with partners from WHO and UNICEF, and grant applications. The publications are listed in this report under the relevant section. The collaboration is multidisciplinary. Expertise includes: global health technological development specialists, maternal newborn health specialists, statisticians, infectious disease scientists, malaria experts, a medical anthropologist, health policy experts in human milk banking and malaria prevention, and bioethcists. |
| Start Year | 2018 |
| Description | Sustainable Livelihoods Foundation |
| Organisation | Sustainable Livelihoods Foundation |
| Country | South Africa |
| Sector | Charity/Non Profit |
| PI Contribution | We have partnered with Dr. Gill Black, co-director of Sustainable Livelihoods Foundation (SLF) in Cape Town, South Africa to develop our participatory visual approach in our research and public engagement on our study. Dr. Black is named as a consultant on our recent submission to the Wellcome Trust for a public engagement award. The partnership would help establish further collaborative links between SLF and University of Oxford, expanding the scope of work done by SLF. |
| Collaborator Contribution | We have partnered with Dr. Gill Black, co-director of Sustainable Livelihoods Foundation (SLF) in Cape Town, South Africa to develop our participatory visual methods (PVM) in our research and public engagement on our study. Dr. Black is named as a consultant on our recent submission to the Wellcome Trust for a public engagement award. She offers expertise on PVM, particularly in the South African context, which has informed our case studies in Somkhele, South Africa. Dr. Black has also run a training workshop for our team. |
| Impact | Grant application to Wellcome Trust, public engagement scheme, January 2018. |
| Start Year | 2017 |
| Description | "Understanding and Addressing the Vulnerability Paradox in Research" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Jan 2019: Research Fellow, Jen Roest, Presentation on "Understanding and Addressing the Vulnerability Paradox in Research" at UCL's Knowledge in Action for Urban Equality: Dialogues in Urban Equality seminar series on The Ethics of Research Practice |
| Year(s) Of Engagement Activity | 2019 |
| Description | Artwork and photo exhibition: In Our Voices: Health & Resilience along the Thailand-Myanmar Border" |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | MORU held a Panel Discussion and Exhibition event moderated by bioethicist Phaik Yeong Cheah, "In Our Voices: Health & Resilience along the Thailand-Myanmar Border" to launch an ongoing public photography exhibition on 15-27th October 2019 at Bangkok Art and Culture Centre. The panel included scientists working in malaria prevention and maternal-child migrant health along the Thai-Myanmar border. Featuring powerful images from SMRU's Suphak Nosten, In our voices combined visual and written stories to narrate the lives of people living along the Thai-Myanmar border and highlight their health concerns and challenges. About 60 people attended the opening panel discussion and, overall, about 800-1,000 people attended the exhibition. The exhibition showcased a collection of photographs taken by Suphak Nosten, reflecting the context of the Thai-Myanmar border and the lived realities of the border residents. The photographs on display were selected by members of the REACH research and engagement teams and the Director of SEA Junction. Each photograph was accompanied by a caption or short description. The original artworks created by the Mae Sot T-CAB members and frontline healthcare workers from SMRU were also on display, and their collective film, In Our Own Voices, was also shown on a loop. Each image included a detailed story, often with the subject's own words. The theme across the exhibition was to challenge perceptions of victimhood and vulnerability as a passive designation to an entire population of migrants, and as encountered in the context of clinical research and prevention. There were strong themes of resilience, perseverance, and hope. At the same time, the underlying structural drivers of health vulnerabilities were evident, in images of climate change, poverty, and displacement. The research experience was viewed as a means of positive change in health and a means of accessing basic health care, as migrants often fall through the cracks in the Thai health system. Participant comments reflected the importance of appreciating the lived experiences and voices of marginalised peoples in full context, and inviting their own stories and ideas about the role of research in their communities. Visitors were able to interact with our team and panelists during the launch event, and able to use post-its and comment forms to engage with the ongoing exhibition. Many rich comments were collected and are available in our full public engagement evaluation and report. Over time, through word of mouth, the exhibit enjoyed 1,000 viewers and prompted a request for a second exhibition up near the border, which is described in a separate entry. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Blog: The vulnerability and health research paradox: Ethics, gender, trust and power. |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | A blog entry to engage wider audiences on ethics, gender, trust and power in the global health research context. RINGS Blog, Sassy Molyneux & Sally Theobald (June 2018). |
| Year(s) Of Engagement Activity | 2018 |
| Description | Community engagement REACH Mae Sot |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | Presentation and discussion of the research project REACH: Resilience, empowerment & advocacy in women's and children's health research with members of the community advisory board for Mae Sot, Thailand. These are the CAB members who review all research conducted by SMRU in Northwest Thailand. Mae Sot will be one of the sites for our study. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Ethical issues in adaptive trial design for vulnerable infants |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | This was an expert consultation for the Childhood Acute Illness & Nutrition (CHAIN) Network which brings together a network of clinical scientists to build the evidence base to help undernourished children survive, thrive and grow during and after an acute illness. The Network is sponsored by the Bill & Melinda Gates Foundation. Our REACH study is linked with this network and I was invited to offer expert consultation on the ethical considerations of using adaptive trial design in clinical research involving vulnerable infants. The audience were international paediatric clinical researchers from the network, representing 10 countries. The presentation was followed by a discussion which has informed the network's decision to use an adaptive trial design in the next phase of clinical studies on the research platform. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Panel: American Society for Bioethics & Humanities |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Prof Maureen Kelley, How do health researchers address structural injustice? Panel: Taking justice seriously in health research and policy in low-resource settings. American Society for Bioethics & Humanities (Oct 12-18 2020) |
| Year(s) Of Engagement Activity | 2020 |
| Description | Participatory Visual Method (PVM) workshop with the Tak Province Community Advisory Board |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | 29 May - 2 June 2019. Phaik Yeong Cheah, Alun Davies, Gillian Black, Suphak Nosten, Ladda Kajicheewa, Napat Khirikkoekong, Nattapat Jatupornpimol, and Supa-at Asarath organized a Participatory Visual Method (PVM) workshop with the Tak Province Community Advisory Board (T-CAB) and Shoklo Malaria Research Unit (SMRU) health workers and produced a video named "In Our Voices", to understand how local people and community perceive research, research-specific burden and research benefit from their own perspective. The video output is included in 'artistic outputs' and described in detail in that section. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Photo & Art Exhibition & Panel: Border Health, Resilience, and Research Ethics on the Thai-Myanmar Border |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Border Health, Resilience, and Research Ethics on the Thai-Myanmar Border Dates: 16th - 20th November 2020 Photo-Art Exhibition; In person (face-to-face) engagement Location/venue: Mae Tao Clinic, Mae Sot (and live streamed via Microsoft teams due to COVID) Audiences engaged: Members of the general public, students, media personnel, SMRU office staff, representatives of local I-NGOs, researchers and government officials. Following the success of the REACH photo-art exhibition in Bangkok, Dr. Cynthia Muang expressed interest in holding a similar engagement activity in Mae Sot, to engage members of the migrant community along the Myanmar border where our research ethics study had been located. The REACH team agreed to partner with the Mae Tao Clinic (MTC) in replicating the event. The co-organizers decided to hold the photo-art exhibition at MTC because the organisation is a long-standing partner of SMRU that works with and for migrant and vulnerable populations and local communities. The clinic was the most suitable venue for access to the exhibition by the local migrant population. The aims of the Mae Sot photo-art exhibition were to raise awareness regarding borderline health and hidden burdens and vulnerabilities, to engage local communities, public organizations and NGOs in research ethics and to provide a platform for discussion about existing/emerging issues and concerns on these topics. Panel discussion: The exhibition was launched by a panel discussion on the first day which was moderated by bioethicist and Thai REACH study lead, Phaik Yeong Cheah, with support from Napat Khirikoekkong throughout. Panel members were scientists working in malaria and TB prevention and treatment, and maternal-child health along the border and local advocacy leads, including: François Nosten, Rose McGready, Suphak Nosten, Cynthia Muang, Saw Than Lwin (Organizational Development and Advocacy Officer at the Mae Tao Clinic and Naw Hsa Htoo Wah (Manager of the Community Health Department at Mae Tao Clinic). Topics covered in the panel discussion included TB-HIV, maternal and child health, malaria through the eyes of the elimination task force, migrant health and healthcare workers, food security and nutrition, child protection as part of girl and adolescent health. The discussion was followed by a question-and-answer session and an open conversation with the audience. The event was also made accessible to a local and international audience via Microsoft Teams video conferencing. The panel discussion was attended in-person by 25 people including media personnel, representatives from partner organizations and the local health institute, office staff, and 10 members of the organizing team. The estimated age range of those in attendance was 24 - > 60 years old. Approximately 60 audience members joined via the Teams link which included people from the mailing list of MORU, SMRU, and Mae Tao Clinic. The panel discussion and exhibition were attended by Ton Baars, advisor and co-ordinator of the Borderline Collective, a well-established not-for profit handicraft shop in Mae Sot. Following the event Mr. Baars published a blog (link below) describing his recollections and learning https://waldstream.wordpress.com/2020/11/17/health-on-the-border-a-peoples-thing/. Photo-art exhibition: The panel was followed by a launch fo a two week photo exhibition that was attended by approximately 300 people. The exhibition presented 60 photographs, most of which had been taken by Suphak Nosten with other photographic contributions from the Mae Tao Clinic. The co-organizers agreed to display the photographs according to the 6 topics included in the panel discussion, with 10 photos illustrating each topic. The film In Our Voices (see Activity 1) and 3 other videos that had been produced by the Mae Tao Clinic (showcasing their activities, health services and out-reach activities in the field) were shown on continuous loop screening. Entrance was granted until 6pm to accommodate after work visits. The exhibition was attended by a diverse audience of stakeholders including members of the general public, media personnel, SMRU office staff, representatives of local I-NGOs, researchers and government officials. Suphak Nosten gave guided exhibition tours. Supa-at Asarath visually documented the engagement at the exhibition through photography. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Presentation and discussion of REACH SMRU staff, Mae Sot, Thailand |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation and discussion of REACH: Resilience, empowerment & advocacy in women's & children's health research to research and clinical staff at SMRU in Mae Sot, Thailand. These are the clinical researchers and staff serving the Northwest region of Thailand, working across a network of clinics in rural areas. Some will be participating in our study as participants or collaborators. Because this is a research ethics study, we had an extensive conversation about the types of ethical dilemmas encountered in day-to-day research with vulnerable populations. We also sought input on how best to engage staff and researchers on the project. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Presentation of REACH: Resilience, empowerment & advocacy in women's and children's health research - Malawi |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | A presentation of REACH: Resilience, empowerment & advocacy in women's and children's health research at the annual CHAIN meeting in Malawi. CHAIN is the Childhood Acute Illness and Nutrition Network. We will be collaborating with REACH scientists and participants in our research ethics study. Discussion including conversation about ethical issues encountered in child under-nutrition research in low resource regions. |
| Year(s) Of Engagement Activity | 2016 |
| Description | Public engagement on research ethics with school children Kenya |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Schools |
| Results and Impact | In the first quarter of 2020 (prior to national lockdown) Scholar Zakayo gave a talk to approximately 100 learners at an engagement event at Vipingo secondary school where she spoke about her research career and her work at KEMRI including her role in the REACH study. |
| Year(s) Of Engagement Activity | 2020 |
| Description | REACH Study website |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Name of event: REACH project website Dates: 14th March 2017 - 14th January 2021 (ongoing) Platforms: Ethox website, University of Oxford and the REACH Twitter account Audiences engaged: Researchers, students and the general public Organizers The REACH project web pages were designed by the REACH team in Oxford with support from the NDPH communications team. Description A multi-page, multi-media project website sharing information, progress, outputs and findings from the REACH study. Engagement materials comprise text, photographs, video, blogs, links to key publications, teaching resources and presentations www.ethox.ox.ac.uk/reach. Evaluation The REACH website has been shared through mailing lists, social media channels and direct communications with project partners and other colleagues. The project webpages have averaged over 2 000 hits per year over the 4 years of the study. Content has been prepared for upload to the global research map on the main Oxford University website to further evaluate the extent of engagement with the project. The REACH project Twitter account (@REACHOxford) has been managed by the project manager Cai Heath over the past 3-4 years and currently has 490 504 followers including members of the public, academics and the press. Tweets have received 172,895 views/impressions over the duration of the project. The account has been used to share media around research ethics in low resource settings generated by the study as well as to amplify the content produced at our collaborating sites. |
| Year(s) Of Engagement Activity | 2017,2018,2019,2020,2021 |
| URL | http://www.ethox.ox.ac.uk/reach |
| Description | REACH social media |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Ongoing use of Twitter and our REACH study website (including blog) to engage with the wider public on issues related to research ethics and women's and children's global health; the role of research in advocacy efforts; broader discussions of vulnerability and empowerment around women's and girl's health. |
| Year(s) Of Engagement Activity | 2017,2018 |
| URL | https://twitter.com/REACHOxford |
| Description | Radio talk show and call in: research ethics and malnutrition research |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Dates: February 2019 Type of event: Radio talk show and call in Platform: Baraka FM Audiences engaged: General public in the Coast region of Kenya Purpose The aim of the radio activity was to engage a wide public audience on the topic of research ethics with a focus on the ethics of malnutrition studies. Description Our research ethics study, REACH, was linked with CHAIN (a multi-country study on acute childhood illness and malnutrition) as a research ethics case study. At the Kenyan site, we planned a radio show on research ethics, including members of the REACH team at KEMRI (Scholar Zakayo and Gladys Sanga), joined by members of the CHAIN study team and a Community Liaison Group in hosting a series of 4, 30-minute radio programmes on Kenya Coast Region radio station, Baraka FM. The series was aired as part of a regular weekly show on Baraka FM called Jukwaa la Utafiti (Platform for Research; Jukwaa la Utafiti Radio Program Film on Vimeo) that aims to stimulate dialogue around health matters and health research. The 4-part series presented by the KEMRI REACH team focussed on the topic of malnutrition and touched on the challenges faced by participants of malnutrition research studies. The series comprised one programme per week over a 4-week period with key messages aiming to build awareness and reduce stigma. The third programme specifically focussed on the CHAIN study and the REACH project. Baraka FM has an estimated listenership of 150,000 and mainly engages people over the age of 18. During the 4-part series on malnutrition research the Kenya Wellcome Trust Research Programme staff received 19 phone calls and 204 SMS messages which included questions on malnutrition, enquiries related to myths about nutrition, and suggestions and recommendations to the study teams. An evaluation program has been set up to assess the entire Jukwaa la Utafiti radio show and this is an ongoing process. Evaluation activities include monitoring of SMSs and calls received during the show, holding workshops and focus group discussions with radio listener groups, and facilitating feedback discussions with researchers. Responses from the listener groups indicated that the malnutrition series was popular; the team were told it was the best series in the show because it was locally relevant and important. One listener explained how the series encouraged them to assist a neighbour's child who they realised had malnutrition while another said they had learned about the signs of severe malnutrition and had subsequently advised a family member to take their child to hospital for treatment. After the first run of the radio series the KEMRI team recognized that some of the discussion concepts, including research ethics, had been conceptually hard or abstract for listeners to absorb. In response, the team went on to develop a set of radio-dramas as a new approach for enabling audiences to contextualise some of KEMRIs work. These radio dramas are currently being piloted on Baraka FM. An evaluation report on the radio show is being prepared for publication in 2021. Data on the 4 programmes that were co-hosted by the REACH and CHAIN teams and the CLG will form part of the overall evaluation report. Capacity building: Media outreach training for early career researchers: Prior to participation in the radio programmes, research staff co-created an outline script with the radio presenter and communication team staff. This enabled the researchers to advise on questions, pre-prepare their responses and reflect on appropriate terminology and language to describe their work. This often involved translating their work into Kiswahili. Generally, researchers have reflected positively on the impact of 'translating' their work to a lay audience and how this can support their communication skills. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Recalibrating Risk and Ethics Protocols |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Jan 2019, Research fellow, Jen Roest, ran an afternoon session on "Recalibrating Risk and Ethics Protocols" at UCL Development and Planning Department's 'Fortifty and heal: Researching Sensitive Topics and Violent Places' Workshop |
| Year(s) Of Engagement Activity | 2019 |
| Description | Rethinking research ethics: Embedded ethics in global health. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | This was a speaking series designed to engage scientists, funders, and members of the public on ethical dilemmas and strategies for responding to ethical challenges in global health programmes. |
| Year(s) Of Engagement Activity | 2018 |
| Description | School Engagement Programme Workshop with HIV Champions |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Schools |
| Results and Impact | The 'School Engagement Programme Workshop with HIV Champions' had 2 main goals. The first was to inform KEMRI researchers about the experiences and recommendations of high school learner participants in the Adolescents' Health Outcome Study (AHOS) which was one of the research projects linked to the REACH research ethics study. The KEMRI team was especially interested to understand how the students had learned about the AHOS study, their agreements to join the study (along with their parents or guardians) and their experiences of participating in AHOS activities at the Neuro assessment clinic. The second goal of the workshop was to build understanding among the student group about the purpose and nature of health research, research ethics and the aims and objectives of AHOS. The team decided to hold the workshop at a local hotel conference centre (rather than at KEMRI) in the hope that a more neutral venue would be less intimidating. The workshop was attended by 24 'champions' who were all school learners that had taken part in the AHOS study. Sixteen leaners were accompanied by a parent. Three members of the AHOS team, six members of the REACH team, and four members of the school engagement team were also present at the workshop which was facilitated by Mary Nyambura, Scholar Zakaya (REACH team) and Betty Yeri (School Engagement team). The one-day event comprised multiple sessions wherein the HIV champions worked in small groups to role-play and share their experiences of taking part in AHOS research. During the workshop, the champions made several recommendations which the AHOS team have been able to respond to. These recommendations included suggestions on how to reduce barriers to participation through easing clinic attendance and research visits for study participants. Evaluation: The School Engagement Programme Workshop with HIV Champions was evaluated by the facilitation team using observation and note-taking. The workshop activities allowed the researchers and clinic staff to learn about some of the challenges faced by the young research participants. The workshop enabled in-depth sharing of perspectives and opinions in focus group discussions that were held towards the end of the day. After reflecting on these perspectives and opinions - and the learner recommendations - the facilitation team participated in a workshop feedback meeting on April 18th. During this meeting, the team identified key points of learning for the AHOS study and similar studies involving this age group in future: • Role play tended to depict what teens remembered happening in the research process, but not particularly how they felt about it. • Conversations to develop role plays, FGDs and plenary feedback were very informative about reasons for joining AHOS as well as likes, dislikes and challenges around participation. • Many teenagers perceived that through participating in AHOS they would learn about their own strengths and challenges in thinking skills and some also felt that they would be individually helped if found to have any challenges - including being sent overseas for treatment if needed. This possibility of individual help was the main reason teenagers were keen to join AHOS. Positive feedback from learners included: - feeling confident about privacy and confidentiality in the AHOS research context - appreciation for having fares refunded - valued the friendly, welcoming and helpful attitude of AHOS staff - finding some of the research tests interesting/fun (e.g. having reflexes tested) Concerns raised by learners and some parents included: - fears and misconceptions about KEMRI and AHOS including worries that the learners would 'have their brain removed and replaced with one of a much younger child' or that KEMRI would take too much blood. These concerns were also raised by the parents. - the implications of missing school including falling behind with learning and inadvertent disclosure of HIV status or other forms of stigmatization - specific issues linked to AHOS procedures including feeling undermined by the simplicity of the AHOS tests; disliking being asked questions they considered embarrassing in front of their parents (e.g. about whether they have had sex or have a boyfriend/girlfriend; disliking being accompanied to clinic by a parent). Training: Organising the HIV champions engagement workshop required careful consideration of ways to minimise any potential harms to participants that may have resulted from workshop participation. Though several members of the team had experience of HIV related research, working with HIV infected young people raised several new challenges including respecting participant confidentiality, consent and assent, providing a conducive environment for sharing and preparing for emotionally sensitive issues to be raised. These issues were discussed over several planning meetings. Advice was taken from very experienced clinic and research staff and influenced decision-making throughout. Protecting against unintended disclosure of HIV status was a key factor which influenced the team's decision to work with the HIV champions as they were a group which had been established for several years and comprised youth members who knew each other well. For the school engagement staff who had not worked specifically in the context of HIV and engagement with youth, workshop preparation and drawing from experienced collaborators heightened their awareness of the sensitivity required in working with a very vulnerable group of young people. The REACH team at KEMRI concluded that the implementation of the workshop had been rewarding and contributed to confidence building in the team. The KEMRI team is planning to use the workshop methodology in the future for engagement in other research topics including biobanking. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Stakeholder engagement - Bangkok, Thailand Mahidol University |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Team presentation and discussion of REACH: Resilience, empowerment & advocacy in women's and children's health research. Audience: Mahidol University Faculty of Tropical medicine (researchers, students, administrators, clinicians, some of whom will participate in interviews on the project) Followed by discussion. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Webinar: Everyday ethics for health systems researchers |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Name of event: Everyday ethics and justice considerations for HPSR stakeholders Date: 10th February 2021 Type of event: Online, webinar Platform: Health Systems Research (HSR) conference platform (via Zoom) and YouTube Audiences engaged: Researchers, health activists and health managers Facilitators The online event was organized by Health Systems Global with core input from Sassy Molyneux. The webinar was moderated by Dorcas Kamyua (KEMRI and Wellcome Trust). Purpose The webinar aimed to discuss everyday ethics in health systems policy research, particularly from a justice perspective, and to share ideas on approaches to build everyday ethics among diverse stakeholders. Description Dr. Busi Nkosi, senior researcher at AHRI, was a speaker on the Health Systems Research webinar. Dr. Nkosi's presentation 'Integrated Ethics: Addressing Researchers Responsibilities in the contexts of vulnerability - today, focus on frontline staff' presented highlights of the REACH study findings. This presentation was followed by a screening of a film called On the frontline - meeting ethical challenges in global health research which was co-produced as a policy, community and public engagement tool for the REACH project. The total duration of the webinar was 1 hour 15 minutes. Professor Molyneux was also a speaker at the event. Presentations by 7 speakers (and the film show) were followed by a question and answer session which was underpinned by the chat function on the YouTube platform. |
| Year(s) Of Engagement Activity | 2021 |
| Description | World Congress in Bioethics, Symposium |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | In their own voices: Vulnerability and agency of women and children in health research. Symposium, Chair and presenter. World Congress in Bioethics, June 2020. The team presented 4 talks, highlighting the key findings of the case studies from Thailand, South Africa and Kenya. The symposium closed with an invited commentary from Prof Florencia Luna, from Argentina, who discussed the implications of the findings for conceptual work on vulnerability and research ethics guidance. We have made a full recording of the symposium available on our project website. |
| Year(s) Of Engagement Activity | 2020 |
| URL | http://www.ethox.ox.ac.uk/reach |