In history, cases have occurred where human subjects of research have been, willingly or through criminal negligence, either infected with disease pathogens and not given medical care or left to be infected by a certain pathogen while a cure or preventive substance was available (Talley, 2012). This has led to the need of advocates to supervise all aspects of clinical health research to ensure that researchers don’t abuse the privileges enjoyed by virtue of the charter to conduct research.
An advocate in health care research means someone well placed to protect the rights of patients are adhered to. They can be considered as educators, representatives, ombudsmen, patient navigators, care managers or health advisers. Their role is to ensure that researchers adhere to best practices and help in mediating any conflicts that may arise. Advocates in research are used ensure that fair practices are adhered to and to breakdown information to the target groups. In clinical health researches, advocates have the primary duty of protecting the medical research’s human specimen (Bourgeault, 2010).
Major issues that the advocates are concerned with include but are not limited to:
- What or who drives the research question. This implies learning of the motivation of researchers and where funding for the research comes from (De Chesney , 2008).
- Analyzing how the researchs results will be disseminated to various relevant individuals.
- That the research is carried out in the context of consent under full disclosure. This means that the subjects understand wholly what type of research they are consenting to and the possible implications.
- In recent times, clinical research has benefited from lobbying by research advocates for funding of certain areas of medicine. This has seen a changing trend where more and more research funding is being pooled into organised advocacy lobby groups than into the research firms’ coffers (Talley, 2012).
- A most notable sector that has a beneficially of this trend is the research on breast cancer through the pink ribbon initiative.
- That the right to confidentiality has been thoroughly covered by the researchers and no derogatory, or abusive titles have been assigned to the subjects.
- That the researchers will not use any products or methods that have not been approved as fit for humans in their research.
- That special attention has been given to the prevention of any destructive effects that may arise as a from the research.
- Most countries have established ombudsman offices for clinical medicine research which serve as advocates for the rights of subjects. These are mostly concerned with ethical issues from research by departments of health. Other groups involved are the United Nations through and local institutions. Mostly the last two conduct initial reviews of the research proposals, ensure that subject will not be exposed to any unreasonable or unnecessary risks and continually and periodically review approved researches to ensure the firewalls established for subjects remain intact (Farley, 2007).
- They also get involved in the approval process to ensure only the most valid proposals go through.
- Health clinical research advocacy has come a long way and is yet to attain its full potential. This notwithstanding, the benefits accrued by researchers (in terms of no lost revenue in litigation) and subjects (less exposure to risks) cannot be gainsaid.
- Top of FormBOURGEAULT, I. L., DINGWALL, R., & DE VRIES, R. (2010). The SAGE Handbook of qualitative methods in health research. Los Angeles, SAGE.
- COSTELLO-NICKITAS, D. M., MIDDAUGH, D. J., & ARIES, N. (2011). Policy and politics for nurses and other health professions: advocacy and action. Sudbury, Mass, Jones and Bartlett Publishers.
- DE CHESNAY, M., & ANDERSON, B. A. (2008). Caring for the vulnerable: perspectives in nursing theory, practice, and research. Sudbury, Mass, Jones and Bartlett Publishers.
- EARP, J. A. L., FRENCH, E. A., & GILKEY, M. B. (2008). Patient advocacy for health care quality: strategies for achieving patient-centered care. Sudbury, Mass, Jones and Bartlett Pub.
- FARLEY, D. (2007). Assessment of the AHRQ patient safety initiative: moving from research to practice evaluation report II (2003-2004). Santa Monica, CA, RAND Health.
- MCMULLIN, J. M., & WEINER, D. (2009). Confronting cancer: metaphors, advocacy, and anthropology. Santa Fe, School for Advanced Research Press.
- TALLEY, R. C., & CREWS, J. E. (2012). Multiple Dimensions of Caregiving and Disability Research, Practice, Policy. Dordrecht, Springer. https://public.eblib.com/EBLPublic/PublicView.do?ptiID=971589.