NAPWHA regularly receives requests to endorse or support research in the area of HIV. Such support may take the form of active involvement as an investigatorA medical researcher in charge of carrying out a clinical trial's protocol., help in designing a research project or simply assistance with recruitment. NAPWHA recognises the importance of research to improving the health and well-being of PLHIVPerson (or people) Living with HIV. This term is now preferred over the older PLWHA. and in most cases is willing to provide support where it is able.
The following principles are designed to help determine whether NAPWHA will support a research project and what level of support will be provided. The level of support offered will also be determined by NAPWHA’s resources and any decision to become involved in research is ultimately made according to organisational capacity.
Not all research on HIV is deemed relevant to NAPWHA’s goals. Projects or programs of particular interest are those that specifically seek to target Australian PLHIV for recruitment; those that relate to the national policy environment that has relevance for PLHIV; and those concerned with health promotion relevant to living with HIV.
NAPWHA also pursues its own program of community based research. In so doing it seeks to investigate areas and topics that it regards to be either under-researched or of particular interest to PLHIV and/or NAPWHA member organisations. Often this research will be a vehicle to develop relationships with individuals and organisations in the research and community sectors. It may also be an opportunity to advocate for further research on particular issues. NAPWHA seeks a collaborative relationship with others working in the field in order to develop the best outcomes for PLHIV.
NAPWHA recognises that the appropriate bodies to provide ethical reviews of research are institutional human research ethics(In clinical trials) The process of determining that a proposed clinical trial conforms to a wide range of moral, scientific and ethical standards, to ensure that participants in the trial are not abused, mistreated or unfairly taken advantage of. Before a clinical trial can go ahead, it must be given approval via an independent ethics process. committees registered with the National Health and Medical Research Council, see www.nhmrc.gov.au/health_ethics
It is the task of these committees to ensure that research complies with the National Statement on Ethical Conduct in Human Research, see www.nhmrc.gov.au/publications
NAPWHA also supports efforts to move towards single ethical review for research that occurs across multiple centres, see “HoMER”.
Such single review significantly streamlines research by reducing the administrative burden placed on investigators.
The research should be clearly relevant to people living with HIV. Relevance may be broadly understood to encompass a wide variety of research including basic science that may not lead to direct outcomes for PLHIV as a result of one particular project. Research that proposes to only contribute to academic knowledge without a plan to produce potential for outcomes relevant to PLHIV is unlikely to be supported. Research that duplicates existing studies or seeks to produce knowledge of solely commercial benefit without a concurrent benefit for PLHIV is also unlikely to be supported.
Research should have some outputs that are framed in ways that are useful to NAPWHA and its members. While academic papers and conference presentations are important outputs for researchers they may not always be useful for community based HIV organisations. Researchers should build community dissemination methods into the design of their projects. These might include community reports, newsletters or workshops. It is incumbent upon researchers to establish processes that will assist in the translation of their research into practice and the dissemination of their findings.
- Involvement of affected community
Research involving PLHIV should seek to actively involve the affected community. This may take a variety of forms and NAPWHA does not seek to prescribe any particular approach. Some research projects have included a suitably qualified PLHIV on the research team itself as a coinvestigator. Meaningful consultation should occur during the study’s design and opportunities should be offered for community input to the research questions and the methodology. Some research projects choose to constitute a reference group containing community members and such groups can play an important governance role in relation to individual projects. An alternative, when a number of different projects occur within the same centre or organisation, is to constitute a reference group that oversees a program of activities. The best approach depends on the research concerned and the resources available.
NAPWHA is unlikely to support research where there has not been meaningful consultation during the design phase of a project.
- Ethical Review
NAPWHA will normally only support research that has been approved by a Human Research Ethics Committee registered with the National Health and Medical Research Council or been deemed to not require ethics approval according to the NHMRC guidelines. All major research institutions in Australia have such a committee. A full list may be found at www.nhmrc.gov.au/health_ethics
In the rare instance where NAPWHA is asked to endorse research involving animals it must be approved by an institutional Animal Research Ethics Committee and conform to the relevant NHMRC guidelines on the use of animals in health research, see www.nhmrc.gov.au/health_ethics/animal/issues
In cases where a researcher is located in an institution or organisation that does not maintain an NHMRC registered HREC, NAPWHA would encourage the researcher seek ethical review from such a committee. Many HRECs will accept referrals in these cases.
PDF of this policy paper may be downloaded below.