groups » Informed Consent and Community Engagement » Get involved in the First Global Health Trials Collaborative Project – Community Engagement: Your ExperiencesAttached files: DevWorldBiotethics_2013_Gikonyo_Feedback.pdf, DevWorldBiotethics_2013_Gikonyo_Feedback_1.pdf, PLOSMed_2005_Singh_Abandoned.pdf, TropMedIntHealth_2010_Briesen_Understanding.pdf
You are invited to participate in the first Global Health Trials Collaborative Project, which collect examples of community-engagement difficulties encountered during research projects, by members from across the globe, so as to assess geographical differences in experiences countered and to facilitate future research. Additionally, experiences surrounding community engagement activities will be recorded and shared for future use by other groups.
Initially this project will take place online, but if sufficient data is captured there will be the chance for all the contributors to collaborate on a paper detailing experiences, lessons learnt, and community engagement solutions in collaboration with Global Health Trials’ expert groups.
To collaborate in this project, simply share your experiences here. You will need to write where you are (city and country), and write as much as you like about community engagement in your area. For example, perhaps research is little understood in your area, or perhaps people equate researchers with devil workshippers and don’t understand why blood is being taken, or why research is being done on children. Perhaps people misunderstand research and find it difficult to understand that they aren’t being given a ‘cure’? Or are there rumours surrounding the community field workers and their roles? Tell us your experiences.
Secondly, have you done some community engagement activities in your area? If so, what, and how well did it work? We’ve heard of some groups doing open-days at their centres, for example, or having open meetings in the community, where people can ask questions. What did or didn’t work for you?
To get you thinking, we’ve got some examples here of ‘community engagement gone wrong’ (see attached files), where trials or standard care have been stopped due to misunderstandings in the community. These are fantastic example of why it’s so important that communities are sufficiently prepared for research studies, and how this project could therefore facilitate research by sharing the lessons learnt from our global network of researchers.
If sufficient responses are received, Global Health Trials’ experts will work with everyone who has provided sufficient information on this discussion, to create a journal article – so this is your chance to collaborate and share authorship. Please share below!
Hi My name is Thola Bennie and I'm based in Cape Town. At my site we recently experienced some challenges when we were trying to get community members to, first of all understand, and then give their support for the research that we were planning to conduct in the community. Our study is investigating the acceptance of medical male circumcision (MMC) in the community which, those who may know is a very sensitive topic in the Xhosa community where we are based, as Xhosa men undergo traditional circumcision (TC). It was clear from the beginning that the study objectives were not completely understood in the community. Most community members thought we were trying to discourage boys from going through TC and trying to persuade them to go for MMC and thus abandon their cultural practice. So we set out to get slots in community meetings so we could talk about the study and the study's objectives. The problem however was that the minute we mentioned MMC we would receive negative reactions and community members would refuse to engage or have a discussion with the study team. The whole undertaking was made even more challenging by the fact that the study team was made up of mostly women, and women we learned, are not supposed to engage in discussions about MC with men in the community. Also because what actually goes on during traditional circumcision is such a closely guarded secret we were told that none of the parents would want their sons to enrol onto our study and so getting informed consent would be an issue. We were also advised by our CAB to attend community-wide meetings and speak about the study and get the community's support before we can even begin recruitment, however the other challenge being that when community meetings happened we were never told about them until the last minute when attendance would be impossible. To cut a long story short, we revised the protocol a number of times, getting feedback from staff who are from the community and who understand the culture until the protocol was "acceptable" to community representatives before we could start recruitment.
What I learned through this whole process is the impotance of community education as far as research is concerned, concepts that we as researchers think are easy to understand such as "observational study" were difficult for community members to grasp during our community engagement efforts. I also learned the importance of involving the community much earlier during protocol development so that their concerns can be addressed earlier which would minimise protocol revisions / amendments further down the road.
Hello every one,(compliment of the season).
I am a Medical Laboratory Scientist,(Chemical Pathologist)currently working at the Nigerian Institute of Medical Research,NIMR Yaba Lagos,
Nigeria.I also hold a Fellowship of the Medical Laboratory Science Council Of Nigeria(MLSCN) with Specialization in Haematology and Blood Grouping Serology.
My major concern on Community Engagement (CE) is that of Poor Community Involvement in the designing,implementation, monitoring and
evalution, result dissemination,etc of most Medical research.
The needs of the people are often not carefully studied,their norms,ways of life, traditional beliefs,etc are usually missing in the design of most clinical research that is to be carried out within the local community. The people complain of being used by the researchers, hence withdraw their cooperation one way or the other.
There is also an erroneous belief that the use of Civil society Organisations(CSOs)to reach and recruit communities is synonimous to CE!
CSOs are gatekeepers to the communities, they cannot take the place of the local people directly participating in research.
It is common here that the communities are often not educated enough about the research being conducted among them, so they see it as "their thing" and not 'our thing'. There is no sense of ownership and this naturally breeds apathy,lack of trust, misunderstanding of the goal,objectives and rationale of the research.
Some researchers use highly technical words to present research purpose either in the consent forms or during verbal discussions,some present inadequate details of research purpose in the background of the proposals. Others would not administer the consent forms in practice, even though approved by the ethics commitee, many are in the habit of over emphasizing benefits over risks and taking undue advantage of the vulnerable weak, poor, often uneducated populace, sometimes with a promise of money,free treatments and a possible 'cure' when what is going on is only a trial of an unknown medicinal product!
Another big concern is the capacity of our IRBs. Research protocols often show no evidence of community involvement in its development, yet
approvals are given. They hardly possess the capacity in terms of trainings, finance and man power to monitor researches they approve in order to ensure that CE happens in the field.
Researches that are foreign funded come with terms and conditions defined to them, thereby limiting the need for flexibility which would have made it possible to design research that is sensitive to the Nigerian Community.
MY THOUGHTS ON THE WAY FORWARD:
1.CSO engagement should not be considered as CE!. Discussion and recruitment of participants should be done from the community after duly providing easy to understand information to them.
2. Researchers must engage CSOs in all community based research to educate and empower the community and the research participants,only.
3. Community ideology of proposed research should be accommodated in the design and conduct of the research for maximum productivity at the end of the day.
4. Researchers need to collect Memorandium of Understanding (MOU) from communities as evidence of permission to work within the communities.
5. A clear plan of how research findings will be disseminated to the research participants and the community should always be part of the protocol and the Ethics commitees must have a system of monitoring that it happens.
6. It is unethical for IRBs not to monitor researches they approve. They must ensure the research/local communities are adequately informed (engaged)and protected before, during and after the research.
7.Informed consent forms should be made available in local languages for easy understanding. Verbal translations of English to local languages are no more acceptable.
8. Researchers should discontinue overemphasis on benefits over risks as this happens too often in the field.
9. Researchers should begin to see research participants as "partners" and 'human beings' and not just "subjects" for research.
10.Ethics Commmitees must ensure the eight(8) minimum requirements of informed consent are addressed in all informed consent forms submitted for approval and that these are stated in simple, clear and easy to understand words before they approve. The 8 minimum requirements include: The goal of the research, Procedures and schedules, Study duration,Compensation, Confidentiality and anonymity,the risks and benefits associated with participation,the study product and voluntary nature of the research.
11. The Nigerian Govt. and institutions are to drive research in Nigeria rather than leave funding in the hands of international partners.
With these and many more I belief the goal of CE will be achievable and quality clinical research will be the outcome.
I am Adamu Addissie, a medical doctor and public health specialist from the School of Public Health, Addis Ababa University - Ethiopia. Currently I am a PhD candidate in Bioethics (Wellcome Trust fellowship) at BSMS (UK). In this project, we are doing a follow-up study on what previous researchers have already worked on and we look in to assessing the feasibility of introducing rapid qualitative assessment techniques to identify context-specific ethical issues to inform and tailor consent processes.
Sorry for joining the discussion late. I found the current discussion on CE an interesting one. CE is potentially broader in scope and would encompass beyond engaging the community 'for the sake of a research project' rather as 'stake-holders of the research process'. However the process of ensuring CE is a challenging process as the dynamics between 'research and community' can potentially take different dynamics and models depending on a number of factors including contextual differences. Each community has its own identities and unique dynamics in various scales. Especially in countries which are multi-ethnic and with diverse cultural and socio-economic differences, communities can have diverse levels of understanding and misunderstandings about research and its purposes. For example, in some communities the concept of research could be totally new and a concept difficult to assume as understood, rather confused with medical care and treatment. Such prevalent circumstances have further effects on the processes of recruitment and informed consent as well as the actual process of research undertaking. In the process of engaging the community, rapid qualitative techniques potentially can serve in further understanding the community and its dynamics not only for ethical issues but for all the phases and cycles of the research undertaking process.
Hope the discussion will continue !
Adamu Addissie MD
Just to add to the above points that l sent,getting Ethical approvals for research here in Cameroon is anight mare as one has to go to the the National Ethics committee severlly and pay some money for the borad before an approval is got for a Research study.
Meanwhile,the languages spoken widley by those hwo have not been to school is pidgin so one who has to carry out a research project has to speak this language,while French is used for the Frencj speaking regions of the country.
When the Ethics Committee has give you an approval,you still need to aply to the Ministry of public health for an Administrative approval before you can get to the field to carry on the study.
These and many more points make research in Cameroon difficult to be carried on.
Ambanibe Jerome Akeneck.
I am Ogundokun Olusegun, a Biomedical Scientist and a clinical trial Monitor from Lagos in Nigeria. Community engagement issues here in Nigeria are enormous that they cannot be overemphasized. Nigeria having a military ruling of about 16 years has been associated with widespread of human rights issues. The nation having the population of about 150 millions is comprised of more than 250 ethnic groups with diverse languages, faith and belief. Nigeria have suffered from political instability, widespread poverty, poor economic growth and inadequate health resources. Illiteracy rates are very high. Malaria, Tuberculosis, HIV/AIDS and other infection diseases contribute to the poor health of the region. The national literacy rate is about 57% but significantly lower in rural area where community engagement should be most effective. The so-called general communicative language (English) is not widely understood by the populace.
Unemployment continues to be a major concerns of the people.
HOW HAS THESE AFFECT THE COMMUNITY ENGAGEMENT.
1. Due to the diverse languages among the people, it has been so difficult to communicate effectively with the community by the researchers as some communities only understand their mother tongue, any other language is a fallacy to them.
2. Ethical dilemmas always come into place because of social and structural factors which has also influence the design and implementation of research.
3. Informed consent is not easily obtained due to over-gender sensitivity and a so called self defence phenomenom. Some communities see clinical researchers to be ritualist and always deny giving their consent to partake in any research you are bringing to them.
4. Faith and belief differences is also a factor that always make research difficult as some communities faith do not allow them giving out their blood sample for research of any purpose.
5. Due to the high poverty level and selfishness, some community leaders always ask for huge amount of money from researchers before any research (that will bring a positive life-style to them) could be proceeded. Their youths also demand for money making life unbearable at times for the researchers.
6. The part of Government cannot also be left out. Government do not give priority to clinical research at all. They provide less or no fund for researchers bringing a brain-drain of researchers in the country. Majority of researches done presently are been sponsored by Non Governmental Organization and this also contribute to research problems.
I will suggest that capacity building through education, technological resources and health care should be considered as potential benefits to the community.
For further enquiry, you can contact me through:
COMMUNITY ENGAGEMENT MY EXPERIENCE
Mercy from Kenya working with National AIDS and STI Control Program Key Populations. We demonstrate the degree to which a combination of structural, biomedical and behavioral interventions can reduce infectivity among the Key Populations.
Some challenges encountered
Multiple research being done on the same key populations the community feel that the donors are using them and their children for own personal /organizations l benefit.
Religious leaders feel that Key populations behaviour is an abomination and hence do not support at all yet we require their input for help.
The nature of work done by the key population generates a lot of income and hence they don’t have time for programmed interventions as they weigh the costs and the benefits thereof.
Have you done some community engagement activities in your area?
Prior to program initiations, given legal and policy sensitivities arounding Key populations, we met with all key stakeholders in judiciary, police, municipal and health services in Nairobi and Coast Provinces to obtain input and collaboration.
We constituted a community advisory board (CAB) in Nairobi and coastal Mombasa (including Malindi) with representation from provincial administration, district health, Community Health Workers at each of the services sites, and local leaders (religious leaders, teachers etc)
The other local stakeholders, church leaders, and other decision-makers whom we informed about the study were to meet with other stakes via community “barazas” (an established community discussion mechanism in Kenya) to inform the local community about the study.
We anticipated that these will be held on an ongoing basis as we have found this to be critical in both prevention service delivery and our study activities.
If so, what, and how well did it work?
The use of the CABS facilitated the community buy in during the initial phases of some of our studies.
Some of the groups did open-days at their centres (barazas) to sensitize the community about the key populations However,
We have had some of our clients arrested which affected most of the timelines of some of the studies we conducted.
Though we anticipated that community meetings will be held on an ongoing basis, most of the meetings had to be facilitated by provision of travel reimbursement to the CAB members which was not sustainable and the CABS could not continue with the same since this was the motivating factor for their volunteer work.
Personal differences amidst the CABS resulted to misunderstanding amidst themselves as a result they went out with different voices.
Conflict between law and CAB support was a big issue. Some of the CAB members who are from law enforcement groups found it hard to support or arrest the law breakers. Case for IDUs
My name is georges DIATTA from Dakar in Senegal. My research activities focused on Epidemiology of tick-borne relapsing fever (TBRF) borreliosis in West, North and Central Africa and rickettsioses transmitted by ticks (argasid and ixodids ticks) and/or head and body lice. In West Africa, where traditional habitat is predominant my reseach activity was conducted in community, I always ask their adhesion and agreement before looking for rodent burrows inside bedrooms of dwellings and/or to capture small mammals inside dwellings, even to take hard ticks from cattle, body and head lice from young girls, women and boys involved engagement and totally agreement of community and persons concerned. I adopted this approach with successfull during all surveys in the field. Recently, I implemented technique that facilitate control of tick-borne relapsing fever borreliosis with total engagement and agreement of two rural communities, which reduced significatively incidence of TBRF within community.
I hope find financial funding to implement this technique in main West african foci of Borrelia crocidurae transmission.
I have concerns about how community engagement (CE) is conceptualized and what we think its role is… often we think its main role/purpose is to solve problems that arise in the community in the conduct of research– and unfortunately historically that is how CE has been implemented. My take is that CE needs to happen way before problems even arise, and wherever possible before any research is conducted. I hope then that those who contribute will challenge this perception of community engagement as a problem solver.
Secondly, we also need to appreciate that CE is not panacea to many of the issues/problems (ethical or otherwise) that arise in the field. I think we sometimes run the danger of over-emphasizing the importance of CE, and we need to consciously be aware that there are many issues that cannot be solved through CE; CE when done well can illuminate some of the issues, but solving them might require wider bodies (e.g. the on-going debates on benefit sharing, on data sharing etc).
Finally, we also need to appreciate that CE can lead to unintended perverse outcomes e.g. when CABs advice contradicts ethical norms, how do we negotiate these differences?
I look forward to seeing how this discussion develops. We recently published paper on community engagement and consent from a meeting held in 2011 so we know it can be done! (The open access paper is at http://www.jstor.org/stable/10.1525/jer.2013.8.4.1)
My Name is Ambanibe Jerome Akeneck.lam wrtining from Yaounde Cameroon and lam a clinical research nurse with 13 years of research experience in a multiple field.
lam currently taking an MPH online from the UK and finds this topic so interesting to me.
l am delighted to say here that the most community challenges that we have got are those of lack of collaboration from other health personnel in the public service,secondly;we face the challenge of lack of resources to meet up with the rough terrain on which we work. Meanwhile the government of my country has not thought it wise to include nurses or take their plight as priority in to research funding and opportunities.
Most of the work we do is based on our personnal effort to undergo training and the communication tools are not there for us to exploit our optimum.
The training is universities is not geared towards preparing the young nurses for research and even the few university graduates who are given research grants do little or nothing with the research grants to carry out research but simply divert the funds to other activities.They are not research orinted and the nurses who see it important to do research are not given any grants.
People in my setting welcome research when the motives are best explained and they assist to seeing that it is done using them as subjects but they require some compensation in any kind.
l really feel that if we can advocate for governments;organisations to fund research projects for health personnel through the UN or WHO it will be an added advantage.