When community means just recruitment

[JORGE]

In my country, Spain, the role of the community is research is really vague.

Our government used to be enrolled in community engagement and participation years ago, when we have a strong National AIDS plan and secretary but since almost 10 years ago, the main period for the GPP guidelines, we have lived with a new party in the government which close this department, cut the resources and budget and close the real participation and community involvement.

How can I start a new process and changing the national government culture on community engagement in researches?
Also it’s important to consider than our law is quiet restrictive for the community participation in clinical trials and we don’t have access to treatment information as HC professionals have.

Topic

[Mmapule]

In our country South Africa community engagement plays a big role in the clinical trials.The cab members are not doing recruitment but they advise the site about recruitment and where to recruit.The side has built a very good relationship with the community and the community are able to protect the side when the are unrest in the townships.The site engage with the stakeholders about community dialogue and awareness about the trial.The is always an open communication and transperancy between the research staff and the community.

[Maurice]

Jorge! Hello.
It is time for you to seize the Ministry or Department of University Education and Scientific Research of your country, to make a plea and do something about it. You have the duty to show the authorities in your country the following: “a country without scientific research is doomed to disappear! “. We live the century of invention and scientific innovation without which, a people can not develop. You can be the catalyst for this initiative in your country, for the benefit of a whole people.
To our colleague Carué: the same recommendation remains formal for the discussions with the public health sector leaders and the establishment of the scientific research department, supported by the CAB or CAG approach of working in synergy following the plan National and international strategy, this will help you further on clinical trials.
Maurice Mudimbe

[Carué]

We do not have, in Brazil, any requirement of community participation in research, although we do have participation in the public health system in all levels, from local boards in the clinics to a national board.
National Committee on Ethics norms mention community participation in research as desirable, but we do not have actually any public support for this. My current experience is in a research sponsored by US, that have community engagement and CAB as requirements. We had a CAB formerly in our institution but it was closed after the end of the US-sponsored study that required it.
So, the current challenge is to develop the culture of participation first in our institution, and then try to spread the word nationally. We have been encouraging and financially supporting the building of a national network of CABs (all required by US-sponsored studies) for sharing experiences and strengthening. It will be important also to have documentation and objective evaluations of the processes (both internal and national) in order to share the experience in conferences or publications and with stakeholders like local and national ethics committees.

[Rosemary]

Hie Jorge

I think it can start from the ethics committees to demand for community engagement plans when people sub,it protocols , so that when the researchers go to the communities it becomes like a regulatory requirement to do so. Justification for this can be that the communities can misunderstand research and consent to things they dont understand hence the need for CE. I guess also for you the Government should be viewed as one of your important stakeholders with the most influence and a specific plan on how to get their buy in needs to be in place.

It is sad though that the government is the one that blocks CE !

[Kelvin]

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.

[JORGE]

There are many barriers to engage community in research or decision making processes. I guess we need to start a long way of training and pedagogy on GPP to raise real awareness in politicians and decision makers about the importance to involve community in the whole process of researches, projects, trials,…

Thanks for the info!

[Author]

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