ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)
Search
Generic filters
Exact text matches only
Search into
Filter by Categories
Research integrity
Filter by Categories
Human Research Ethics

Resource Library

Research Ethics MonthlyAbout Us

Institutional Responsibilities

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Towards a code of conduct for ethical post-disaster research0

 

JC Gaillard
School of Environment, The University of Auckland, New Zealand
Unit for Environmental Sciences and Management, North-West University, South Africa
Profile | jc.gaillard@auckland.ac.nz

Lori Peek
Department of Sociology and Natural Hazards Center, University of Colorado Boulder, USA
Profile | Lori.Peek@colorado.edu

.
We recently called for a code of conduct in disaster research. This call is rooted in our respect for the research process itself and our care for affected people and the researchers who do this work. To be clear, we are calling for a cross-disciplinary conversation to advance a shared set of moral and ethical principles to help guide what we study, who we study, how we conduct studies, and who is involved in the research process itself. We are not arguing for another layer of bureaucratic or regulatory oversight such as those required in some countries by internal review boards and ethics committees. Our hope is that such a discussion will launch first within focused academic and policy meetings, before it can be scaled up to the regional and eventually international levels.

Our intent is to prompt further reflection and conversation around the following three possibilities for ensuring that disaster scholarship is relevant, fair, and ethically sound.

First, it is essential that research has a clear purpose that is rooted in present knowledge gaps and emergent context-specific research priorities in the disaster aftermath. The collaborative work that happens before disaster and in the immediate aftermath can help clarify the focus of research studies and ensure that the knowledge generated is locally-relevant and hence more likely to effectively inform response, recovery and future disaster risk reduction efforts.

Second, ensuring that research is filling relevant knowledge gaps requires that local voices be put at the forefront of the research effort. Local voices may include a range of perspectives, including those of local researchers and those who hail from elsewhere but hold deep knowledge of the places and people affected by disasters. They also comprise those voices of the survivors whose ability to deal with the event and contribute to the recovery effort is central to rebuilding damaged physical infrastructure as well as people’s lives and livelihoods. Ensuring that local researchers and survivors are in the driving seat does not exclude outside researchers when prompted by local colleagues. In many instances, outside scholars have access to a wide range of resources (e.g., equipment, funding, time) that may be unavailable locally in times of collective hardship. Crucial, though, is that local researchers have the opportunity to lead efforts associated with research design, data collection and analysis, and ultimately the sharing of findings.

Third, it is crucial that research agendas and projects launched in the disaster aftermath be ethically coordinated and involve locals and outsiders. This means that local researchers need to be identified quickly after disaster—the National Science Foundation-supported Extreme Events Research and Reconnaissance networks have already jump-started these efforts. There are many other organizations and networks globally that have advanced new methods for identifying researchers and communicating creatively in the disaster aftermath through virtual forums and virtual reconnaissance efforts that allow for a wider range of researchers to connect, communicate, and ultimately collaborate.

Engaging with the three aforementioned areas of possibility is crucial given the rising number of disasters and disaster studies. It is clear that disasters stir the interest of researchers, as evidenced by the growing number of academic publications on the topic. Most of these researchers are driven by a genuine desire to contribute to reducing suffering, but researching disasters can be difficult and there is not a clear ethical playbook for how to proceed.

This becomes especially pressing because researching disasters entails navigating a complex and sensitive environment where survivors may struggle with both the consequences of the event and the task of recovering. Meanwhile, local and outside responders try to support the relief and recovery effort. To fully grasp the complexity of the situation, researchers need to be equipped with an appropriate ethical toolkit that goes beyond the requirements of the research ethics committees of universities and other research institutions. It entails a nuanced understanding of the cultural, social, economic and political context wherein disasters unfold. For scholars who choose to work in new contexts following disasters, this sort of competence is difficult to acquire ad-hoc and in a short span of time.

With these challenges in mind, it remains a dominant pattern after major disasters that outside researchers converge and lead studies conducted in locations beyond their familiar cultural environment. In fact, disaster studies are often driven by scholars located in Northern America, Europe, East Asia, and Australasia. A review of publications on disasters over the past four decades shows that there are fewer researchers publishing studies from Africa, South and Southeast Asia, the Pacific, and Latin America although these regions of the world are those where disasters claim more lives and occur more frequently.

Such unequal power relationships in terms of who leads, conducts, and communicates research on disasters influences how disaster scholarship is framed and approached on the ground. Disaster studies are largely informed by Western ontologies and epistemologies that do not necessarily reflect local worldviews and ways of generating knowledge, which means that implications for policy and practice may be misleading.

Identifying these gaps opens up the possibility for reconsidering some of the fundamental assumptions about how research is conducted and ultimately how knowledge is generated and shared. Our call for a code of conduct is about ensuring that ethical concerns have the same primacy as our research questions. We look forward to continuing the conversation.

This post may be cited as:
Gaillard, JC. & Peek, L.  (21 March 2020) Towards a code of conduct for ethical post-disaster research. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/towards-a-code-of-conduct-for-ethical-post-disaster-research

Working flexibly through the Coronavirus: Continuing professional development in research integrity or human research ethics?0

 

Research ethics and research integrity professional development works best as a long-term commitment to building the capacity of the current and next generation of researchers. As universities extend their online capacity to educate coursework students in the face of the Coronavirus (COVID-19) and place restrictions on staff travel, there is little reason to close down all professional development for staff and research students.

We think there are a number of compelling reasons to conduct these workshops online.  Online workshops offer an opportunity to trigger research conversations among staff working remotely; their timing can be readily adjusted to meet availabilities and they can also be captured and reused in the institution over the next couple of years.

Using Zoom,[1] AHRECS can deliver online workshops for any number of HDR candidates, supervisors and early career researchers. The workshops would be tailored to your institution and your needs. We have run such workshops across Australia, New Zealand and the broader region.

The basic type of workshop lasts for 55 minutes and works best for up to 20 participants. This workshop costs $2000. https://www.ahrecs.vip subscribers receive a 10% discount. Such a workshop might be a 101 introduction or more advanced and practical. AHRECS can also run longer, more interactive workshops and run sessions for larger groups, on request.

Send an email to emquiry@ahrecs.com to discuss further.

[1] Zoom has the advantage of being free for the user and being accessible via computer, tablet and smartphone.  It also supports connection via phone. Sessions can be recorded.

Research ethics review during a time of pandemic0

 

Gary Allen, Mark Israel and Colin Thomson

COVID-19 is prompting changes to academic delivery, essentially intended to contain the spread of the virus and protect the most vulnerable from its effects. As more countries introduce travel restrictions and mandate self-isolation, it will no doubt change the way we conduct research.

Research ethics review needs to adapt to meet the needs of these trying times.

We have written previously about the use of proportional review and proportional processes to progress matters outside of a research ethics committee meeting.

But there will always be matters that need to be considered by a human research ethics committee.

One of the strengths of committee review and one of the reasons flying minutes are not favoured is that a committee’s membership brings together different perspectives, lived experience and knowledge.

It remains important that committees exercise their responsibilities in paragraph 5.2.31 of the National Statement.

5.2.31 Decisions by an HREC about whether a research proposal meets the requirements of this National Statement must be informed by an exchange of opinions from each of those who constitute the minimum membership (see paragraph 5.1.30). This exchange should, ideally, take place at a meeting with all those members present.

But, that does not mean committee members need to sit together in a room.  The same valuable results might be achieved with video conferencing packages like Zoom and MS Teams, Blackboard Collaborate, perhaps even aided by asynchronous online collaborations on feedback. AHRECS has worked with many institutions that already run their meetings successfully online.

Of course, institutions may need to assess their on-line or virtual meeting systems to ensure they enable chairs to be satisfied that there has been an exchange of opinion and not merely individual expressions that are unseen by other members.

In addition, AHRECS can help you take advantage of an online meeting by conducting a short professional development activity on a topic of your choice.  This would involve a further reading and reflection booklet, 15-minute pre-recorded presentation (e.g. Social Media and human research ethics) and 15 minutes of Q&A/discussion.  The cost of such an activity is A$900.

Email enquiry@ahrecs.com to discuss further.

 

Plain English communications and the PICF – and beyond0

 

Bob Milstein
See below

For many of us, preparing the Participant Information and Consent Form (PICF) for a research project is an irksome, time-consuming and unexciting “hoop-jumping” task. Albeit, essential.

Indeed, the National Statement shows how essential the PICF task is. In particular, the Statement’s guiding principle for researchers is that:

“… a person’s decision to participate in research is to be voluntary, and based on sufficient information and adequate understanding of both the proposed research and the implications of participation in it.” [1]

For the purposes of this blogpost, the emphasis is on the ”understanding”.

The PICF provides the key avenue through which research participants are educated and informed ― though oral communications often supplement the document in important ways.

But to educate and inform the research participant, we need to do more than simply give them a lengthy document they find confusing, complex and perhaps impenetrable.

Rather, authors (or teams) who create a PICF need to do more ― they need to:

  • reflect on, and identify, factors that impede clear and concise communication; and
  • create a document that services the information needs (and sometimes the limitations) of the target readers — those readers include the potential research participant as well as the members of the ethics committee who scrutinise (and sometimes criticise) the document to determine its appropriateness for those participants.

Roadblocks to comprehension and ease of use

The roadblocks to generating a clear, concise and easy to easy to read PICF are often:

  • the many topics that need to be covered ― as required by the National Statement
  • the complexities of the project or of the underlying medical, technical, scientific etc issues;
  • the constraints of a – sometimes helpful — template. But even within a template, the writer has an opportunity – and an obligation — to ensure that the text inserted into the template is well-expressed and well-structured — and (most importantly) reader-focused; and
  • the language constraints imposed ― sometimes not so helpfully — by pharmaceutical companies or their legal advisors. Sometimes, that imposed language seems less concerned to inform the reader and more concerned to protect the sponsoring organisation.

For all of these reasons, PICFs can be long, complex, hard to read, and therefore unread.

These challenges are compounded by pressures ― actual and perceived ― that operate on PICF authors. For instance, many scientific writers:

  • under time and performance pressure, seek to cut and paste existing materials in the hope that a cobbled together PICF will do the job;
  • adopt an inflated and excessively formal writing style ― they do this because they wrongly equate formality with professionalism;
  • are concerned that an easier-to-read document might oversimplify (“dumb down”) important information, and generate inaccuracies; and
  • write in a way that works for them and their technical peers, but that ignores or forgets the key reading audience’s needs, priorities and (sometimes exceptionally importantly) limitations.

Reflecting on the key reading audience/audiences, and using the principles of plain language communication to speak to those audiences

The key questions every writer must ask and answer are:

  1. Who am I writing to?
  2. Why am I writing to them? What do I want them to know, do, understand et cetera?

A PICF usually has two key reading audiences:

  1. members of an ethics committee; and
  2. more importantly, potential research participants.

Research in Australia consistently shows adult literacy rates to be low — and even lower when it comes to the issues of health and scientific literacy. These challenges to participant comprehension are even greater for a participant whose thought processes are influenced by fear, false beliefs, denial, anxiety and distress. [2]

Yet unlike the research participant, the writer of the PICF is hyper-literate. And massively informed about the topic ― indeed, they are likely to be as informed about the topic as anyone could be, given the state of the research.

Hyper-literate and highly informed authors struggle to “unburden” themselves of their assumptions around the audience-appropriateness and reader-friendliness of their writing. Most scientists think they are good, or very good, writers. So do most lawyers. Hah!

But unburden themselves PICF authors must. At all times, they need to focus on the information needs — and limitations — of the target reader, so that the participant can, with relative ease, understand:

  • How and why this research is relevant to them or their condition;
  • What problem the research is addressing;
  • What solution the researcher is seeking;
  • What it is they are testing; and
  • How the findings might help the potential participant, or others, with the relevant condition. That is, how the research might improve future care – its cost, complexity, frequency, efficiency et cetera.

Working towards a plain English PICF

For these reasons, we need to reflect on the principles of plain English communication to help readers work their way through the PICF. By doing so, we help satisfy the demands of the National Statement.

When talking about “plain English”, we rely on the internationally accepted definition developed and adopted by the International Plain Language Federation. [3]

“A communication is in plain language if its wording, structure, and design are so clear that the intended readers can easily find what they need, understand what they find, and use that information.”

A starting point: George Orwell

A good starting point on how to achieve a clear and reader-focused document is a famous essay by the novelist George Orwell entitled “Politics and the English Language”. Although he was writing to a general audience, many of Orwell’s observations are directly relevant to the writing of a PICF.

Among his key points:

Never use a metaphor, simile, or other figure of speech which you are used to seeing in print. These days, we say avoid clichés.

Never use a long word where a short one will do. Bernard Dixon, formerly the editor of the New Scientist, tells the story of a manuscript he received containing the following opening sentence:

”The mode of action of anti-lymphocytic serum has not yet been determined by research workers in this country or abroad.”

The author was outraged when he received the following revision from Mr Dickson:

“We don’t know how anti-lymphocytic serum works.”

Dixon says it took him 20 minutes of close textual analysis until he finally persuaded the author that  the meaning of the sentence had not been altered despite the fact that the shorter version was now more direct, more readable and one third its original length

https://www.newscientist.com/article/mg13718654-300-science-and-fiction-plain-words-please/

If it is possible to cut a word out, always cut it out. A first draft is almost never the most concise draft.

Never use the passive where you can use the active. Occasionally, the passive voice has a legitimate — and sometimes an important — role in scientific writing. But it also can be hard work for the target reader: wordy, pompous, unclear, confusing and sometimes deceptive. It is often overused (or to use the active voice, “we often overuse it”; see for instance, Passive Voice in Scientific Writing  https://cgi.duke.edu/web/sciwriting/index.php?action=passive_voice). For these reasons, many scientific journals actively encourage authors to use the active voice when submitting articles

Never use a foreign phrase, a scientific word, or a jargon word if you can think of an everyday English equivalent. In a PICF, which often has a necessary and unavoidable degree of scientific/medical technicality, this can be hard to achieve. But sometimes, it might be helpful to supplement the necessarily technical text with additional text that walks the reader through the concept in ways that will work for them. And remember: many research participants might struggle with language that the researcher will take for granted — for example words like “positive”, “negative”, “lateral”, “terminal”, “ante”, “hyper”, “hypo”, “significant”, “natural”, “theory”, “monitor” etc.

Break any of these rules sooner than say anything outright barbarous. As Orwell acknowledges in this, his final, point, the language (and for that matter, structure and design) is there to be used, and the options for generating clear and reader focused text are limitless.

But whatever the approach, and whatever the setting, we must all reflect on the importance of generating text for our target readers that is not only accurate and comprehensive, but is also clear, concise and effective from the reader’s perspective. While these writing principles are clearly important in the writing of a PICF, they are also important in the wide range of settings where  researchers seek to inform, educate, engage and persuade their readers — including the general public, potential funding sources, policymakers and politicians.

Some Further Reading

Australia has for many decades played a leading role in the so-called plain language “movement”, particularly in connection with a number of important law reform initiatives. Currently, Australian plain language practitioner and advocate  Christopher Balmford chairs the Standards Committee of the International Plain Language Federation. In 2019, the Federation proposed to Standards Australia that it in turn propose a plain language standard to ISO. Both proposals were approved. ISO has established a committee, chaired by Balmford, to develop an optional, multi-language, plain language standard.  The first draft is due to be reviewed at a meeting in Bangor, Wales in June 2020.

Although Australia has done a lot of excellent work, some of the key resources around scientific writing come from other countries.

Here is a list of some of the key resources that might help with future PICF writing:

  • Writing about biomedical and health research in plain English; A guide for authors

http://www.access2understanding.org/wp-content/uploads/2014/11/Access-to-Understanding-writing-guidance_v1.pdf     

  • Simply put: a Guide for Creating Easy-to-Understand Materials150 (Centers for Disease Control and Prevention, United States)

www.cdc.gov/ health communication/ToolsTemplates/Simply_ Put_082010.pdf

  • Everyday Words for Public Health Communication, May 2016 (USA)

https://www.cdc.gov/other/pdf/everydaywords-060216-final.pdf

Bob Milstein, Words and Beyond

Bob Milstein is a practising health lawyer and a member of an ethics committee.

He is also lead trainer in Words and Beyond, one of Australia’s leading providers of plain-language training, document rewriting, and cultural change (www.wordsandbeyond.com). He can be contacted on milstein@bigpond.net.au

Footnotes

[1] https://ahrecs.com/human-research-ethics/release-of-the-national-statement-on-ethical-conduct-in-human-research-2007-updated-2018-with-interview . See in particular Ch 2.2.1.

[2]  Australian Bureau of Statistics, Adult Literacy and Life Skills Survey 2006  https://www.abs.gov.au/AUSSTATS/abs@.nsf/Previousproducts/4228.0Main%20Features22006%20(Reissue)?opendocument&tabname=Summary&prodno=4228.0&issue=2006%20(Reissue)&num=&view=

[3] http://www.iplfederation.org/plain-language/

This post may be cited as:
Milstein, B. (6 March 2020) Plain English communications and the PICF – and beyond. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/plain-english-communications-and-the-picf-and-beyond

0