Element Zero: What’s missing from the National Statement to support Consumer and Community Involvement in health research?
In this great post, Mark, Deborah and Ciara discuss a useful new element for the National Statement that relates to genuine involvement, input and participation for consumers/community members.
Mark Israel, Deborah Hersh and Ciara Shiggins
Advocates in health research of Consumer and Community Involvement – a concept better known in the United Kingdom as Patient and Public Involvement (PPI) – argue that it offers a way of building knowledge that incorporates the experiences and perspectives of a range of stakeholders, including patients and members of the public. Such involvement can improve the experience for research participants, enhance the process of informed consent, aid research impact and dissemination. It might also avoid the waste of resources on findings that have little relevance to end users or that cannot be implemented…
In this post, Dr Gary Allen reflects on the establishment and conduct of constructive audits.
Dr Gary Allen
When research with current ethics approval is periodically monitored, it is typically a passive process. Institutions, often via their research ethics administration, will ask researchers to self-report on the continued ethical acceptability of a project (and compliance with any conditions of approval). It would not be unreasonable to conclude that self-reporting is not the most effective way to identify if there have been problems with approved projects. Indeed, if things have gone wrong, it is at least possible that the most troublesome researchers might not be entirely honest about what has happened or why.
So, what is the alternative?
Conducting random audits of a small number of active projects…
Farida Fozdar responds and reflects upon the February 2021 post by Gary Allen and Mark Israel.
The Tower of Babel (Allen and Israel, 2021) is a compelling image when considering issues to do with translation and interpreting and the ethics of social research. Even when we speak the same language, we may not be ‘speaking the same language’, so to speak (excuse the triple metaphor). Talking past each other occurs in many ways but, in communicating the clear purpose and potential risks of one’s research, clarity is vital. Here, I outline a few issues from personal research experience, arguing that the communities themselves may be best placed to identify ethics issues and solutions to translation and interpreting dilemmas.
When working with those from a language different from that of the researchers, it may be the case that the idea of research is not well understood in the culture of origin…
In this post Daniel Sokol writes about a troubling research integrity/human research ethics case that relates to Poland, the UK and Australia.
When I sat on the Ministry of Defence’s Research Ethics Committee, some research projects were potentially dangerous. The risks of testing a new piece of military diving equipment, for example, are obvious. If it malfunctions, the volunteer could drown or suffer brain damage. The risks of historical research can be more subtle but they are nonetheless real, as shown by a recent case involving the University of Warwick.
Dr Anna Hájková, an associate professor of modern continental European history, researches the queer history of the Holocaust. She claimed that a Jewish prisoner may have engaged in a lesbian sexual relationship with a Nazi guard in Hamburg in 1944.
After the war, the prisoner worked as an actress and emigrated from…
In this post Gary Allen and Mark Israel discuss seeding and supporting virtual and physical Communities of Practice and their value over enforcement and policing.
Gary Allen and Mark Israel
Research ethics professionals have grown wary of researchers who talk disparagingly about the work of research ethics reviewers as the ‘ethics police’ (Klitzman, 2015; Makhoul et al., 2014). So, there is more than a little irony in our suggestion for responding constructively to such an adversarial stance (Allen & Israel, 2018) – the Community of Practice (CoP).
A CoP is characterised by a shared area of knowledge and set of practices within which experiences and insights can be shared and learning can be fostered (Wenger et al., 2002). Done well, a CoP can result in continual improvement across and…
Gary Allen and Mark Israel reflect on constructive approaches to languages in human research and for research ethics committees.
Gary Allen and Mark Israel
Much human research is conducted in languages that are not the same as that used by the research ethics review body or the chief investigators. This can manifest in a number of ways including:
Recruitment and consent materials;
Data collection tools (surveys, interview instruments and observation matrices), and
return of results to participants
There is literature on the ethics of interpreting and translation (Drugan, 2017) as well as on the ethics of research in those fields (Tiselius, 2019). However, for our purposes, we want to focus on the first two situations…
Gary Allen, Carolyn Ehrlich, Michael Norwood, Delena Amsters and Maddy Slattery’s post reflecting on great engagements with disability reference groups.
Here, we aim to share insights from a group of Griffith University researchers and a consumer reference group, who worked together on a research project during the development of materials and methods, as well as in the dissemination of research outcomes. The research project we conducted aimed to explore the research experience of people with acquired disability. We wanted to understand what researchers could do better to be more inclusive of people who are often described as vulnerable or marginalised by the National Statement and subsequently Human Research Ethics Committees. We wanted to know how to best include them as participants in, rather than subjects of, research.
This is not a post advocating for the use of reference groups for research involving those with disability and chronic health conditions. Calls for respectful inclusion have already been eloquently made…
We note that the journal, Research Ethics, is now Open Access. https://journals.sagepub.com/description/rea
Research Ethics is aimed at all readers and authors interested in ethical issues in the conduct of research, the regulation of research, the procedures and process of ethical review as well as broader ethical issues related to research such as scientific integrity and the end uses of research. The journal aims to promote, provoke, host and engage in open and public debate about research ethics on an international scale but also to contribute to the education of researchers and reviewers of research…
All articles in Research Ethics are published as open access. There are no submission charges and no Article Processing Charges as these are fully funded by institutions through Knowledge Unlatched, resulting in no direct charge to authors.
Adrian Barnett, Queensland University of Technology . Do we need a national inquiry into
In May this year, a group of researchers gathered in San Jose, California, to
Gary Allen, Mark Israel, Colin Thomson We are pretty excited to be working with
Online research offers many advantages. If well designed, a web survey/task or other data