Community participation in clinical health research - a new research Paradigm

Abstract

The idea of community participation in health and research can be found in all major international and national declarations, including South Africa. Researchers are no longer perceived as having the right to exercise monopoly on conducting and explaining their research, but are perceived to have a duty to empower the research participants and the community to understand their own situation and become a collaborative partner in the research process. In an emerging democratic South Africa there has been a shift from paternalism to recognition of the right to information and autonomy and it is within this framework where the day-to-day realities of clinical health research are confronted. Representatives of relevant local communities should be full participants in planning, implementing and overseeing research in health care. The purpose of this review article is to explore and describe the notion of community participation in clinical health research, the complexities and challenges thereof and the paradigm shift of closing the gap between theory and practice, researcher and community in clinical health research. A new research paradigm is described to accommodate the principles of community participation. It is recommended that a perception survey be conducted among various role-players/stakeholders on their understanding and expectations in relation to community participation in clinical health research, the development of a model and the formulation of standards in this regard.


Gemeenskapsbetrokkenheid in gesondheid en in navorsing word internasionaal en nasionaal, insluitende Suid-Afrika, in verskeie verklarings van voorneme gereflekteer. Navorsers het nie meer die reg om 'n monopolie oor die uitvoering en verduideliking van hul navorsing te handhaaf nie, maar het 'n plig om die deelnemers aan navorsing en die gemeenskap te bemagtig om hul eie rol in navorsing te verstaan ten einde 'n gelykwaardige deelnemer in die navorsingsproses te wees. Te midde van 'n ontwikkelende Suid-Afrikaanse demokrasie, is daar 'n verskuiwing vanaf paternalisme na die erkenning van die reg tot inligting en outonomie. Binne hierdie raamwerk word die dag-tot-dag realiteite van navorsing ook gekonfronteer. Verteenwoordigers van relevante plaaslike gemeenskappe behoort volle deelnemers in die beplanning, implementering en monitering van navorsing in gesondheidsorg te wees. Die doel met hierdie artikel is om die verskynsel van gemeenskapsbetrokkenheid in kliniese navorsing te verken en te beskryf, insluitende die kompleksiteite en uitdagings daaraan verbonde en die paradigmaskuif wat benodig word om die gaping tussen die teorie en praktyk, navorsing en gemeenskap in kliniese navorsing aan te spreek. 'n Nuwe paradigma om die beginsels van gemeenskapsbetrokkenheid in kliniese navorsing te akkomodeer, word beskryf. Daar word aanbeveel dat 'n persepsie-opname uitgevoer word om die rolspelers se begrip en verwagtinge ten opsigte van gemeenskapsdeelname in kliniese navorsing te ondersoek en om 'n model vir gemeenskaps-deelname in kliniese navorsing te ontwikkel.


Health SA Gesondheid Vol.6(4) 2003: 3-13