Forum Replies Created
-
Replies
-
Stakeholder retention for me ties in within a broader strategic plan of the CRS, which also relates to the
Very difficult to maintain stakeholder engagement within a environment where there is constant flux with studies coming in and closing down. It would benefit larger CRS sites which have multiple studies, but for a small site with say one or two studies, its a tall order. Also the institutional costs of maintaining a stakeholder retention, is higher to maintain in relation to one study, where the revenue stream is already burdenede, as opposed to a multiple site where institutional costs can be cross subsidised.There certainly a need for a integrated approach to target the media industry, because they contribute to misunderstandings about a lot of things in society, including the incorrect use of language. We need to have an initiative to reach journalism schools, at tertiary level and industry level, develop a guide for reporting on HIV, and also deal with the ethics of reporting on HIV/AIDS.
Currently inaccurate reporting, other than the various ombudsmans, which are voluntary, there is very little recourse at an institutional level because very often media house do not possess of the inhouse skills to provide content oversight, which is compopunded by the “juniorisation of newsrooms” and then also the proliferation of media platforms on the internet, which are not regulated. This can be seen from the emergence of fake news, which also contributes to the climate of “quality fatigue” or a lackadaisical attitude by media professionals.
Social media is something which is very difficult to integrate within Clinical Trial, also CR management givern the ethical environment are very edgy about social media, mainly because there is a uncontrolled, unknown, uncertainty element, also because it compromise the ethical nature of clinical research; for example the right to confidentiality of participants. But there is definitely space for the creation of social media Community Engagement platforms which can be used to educate the public at large, and also study participants. Best practice to have a dedicated person to manage social media presence, with ethical oversight.
At our site, we engage with other research agencies working in the area, as well as the District Health authority, who in addition to rendering primary health care, also act as platform through which research has to be conducted. However, my experience is that government structures are very formal, hierarchical, and tend to stifle innovation.
The challenge is to move beyond the territorial and protective nature of the landscape and rather see the possibilities. As Communications Manager, it does give you leverage to access levels of agencies, however it can also be limited because most Communications Managers are not actually development practitioners, which as theory is more conducive to formal formative activities, as opposed to the PR theory.As CE advocate, one also acts as voice of the CAB within the organisation (Mainly because CAB is not full time position),
I know that in theory CAB’s are supposed to be autonomous, however in this resource constrained world, being able to access levers of resources, does mean that the playing field is not level!! So in a sense I’m arguing for a dialectical relationship between the CAB and the Site and the Community. They cannot operate in isolation from each other, and a formative research agenda, which can either be adopted by the CAB or the CAB can interrogate the formative research taking place within the community. This can strengthen the CAB as being a multi-purpose role where it can act as the clearing house for research within a area.This is very innovative. We also have a research partnership with a local university and a national research, where they have consulted with our CAB. This is beneficial for CAB’s because they are recognised by an external agency other than ourselves.
Very often the Principal Investigators know what info is sensitive or not and manage the process accordingly. In addition to this we also require of our CAB members to sign confidentiality agreements and keep this on file. I would think that the main strategy should be to develop long term relationships with CAB members, so that trust can develop. Although it should be trust based on mutual respect.
For example when we discuss a study protocol, we would ensure that only a study protocol is discussed which is actually related or relevant to that area (a study which in all probabability will be conducted in that area), because you do not want the wrong info to get out there in the community. At our site where we have multiple studies running, we have one CAB and regularly have training. Last year we held training in how to read a study protocol, supported by roleplay which was done by our Youth CAB, making use of peer education.
At SATVI, we locate CE across three job positions; namely Clinical Research, Field Site Managment and my domain which is Marketing and Communication. We recognise that CE cannot be just one person’s responsbility, that it should be everyone’s KPA. I would like to develop a mature model of engagement, which is not just a tick box exercise in terms of how many CAB meetings, or stakeholder engagements there were, but also qualitative indicators. I am curious how you can build in a mechanism to tie in formative research in a more structured way, because this is largely a hit and miss affair. Also, sometimes because of academic freedom there are unfortunatle restrictions on the free flow of information. In that many times students do research area, tying into socio-economic issues, which could enrich the clinical research understanding of an area.
How does one firmly root CE within a Clinical Research Site so that it does not remain an event, but is a framework of relationships, expectations, outcome and inputs.
Hi Jorge
What do you mean when you say your government is restrictive for community participation in clinical trials. Do they not encourage participation (engagement) or ar yous aying they are anti-clinical trials?
Our experience is that, post-apartheid, the adoption of a new constitutional democracy, the constitutional dispensation encourages/provides a legal framework which has reinforced community engagement. For example, the Bill of Rights and Constitution has given recognition for the rights of citizens who previously were not recognised.They way i see it, the GPP guidelines and GCP Principles, have made it incumbent upon clinical research institutions to ensure that stakeholder engagement takes place. In South Africa, a group of academics and universities adopted a guidelines for Community Advisory Groups and the participation and membership of large clinical trial networks, have also created an environment where researchers recognise and build community and stakeholder engagement into the clinical trial methodology.
Also, locating research within the tertiary education sector, where there is greater awareness of the need for ethical research, assists in creating pillars within which community engagement is sincere and sound.
I think that, not only should there be regular feedback from Clinical staff as a standard, but also structured feedback from the community to the CRS leadership.
During last year we allowed our Clinical Recruitment staff to present a session to our youth CAB about a study protocol, who then had to develop a roleplay which demonstrated their understanding of the the study, presenting it to the General CAB.
This is a useful example to demonstrate that youth can be catalysts of change in that they can play a role in educating adults, and can contribute towards creating an environment where they can be change agents. This exercise was useful because CRS leadership could then gain insight into the thoughts and concerns of CAB members.In our CAB we conduct regular assessments pre and post training interventions to asses the effectiveness.Good day. I am Kelvin Vollenhoven and I am the Communications & Marketing Manager at the South African Tuberculosis Vaccine Initiative (SATVI). We are a TB vaccine research group based in Worcester (100km from Cape Town), but also part of the University of Cape Town. Besides Marketing and Communication, Community Engagement and specifically the CAB resides within my area work functionality. I have previous experience working with participatory methodologies in my early formation years when i was involved with a children’s NGO based in Cape Town.
I would like to complete this program in order to deepen my understanding of the theoretical framework underpinning clinical research. I hope to learn a lot from this program.
