Working with peer/community researchers in qualitative research

Anna Olsen and I have a book chapter in the new SAGE Handbook of Qualitative Research Ethics. We draw on our experiences as university researchers using participatory research (PR) to work with community researchers in the field of sexual health to explore the specific ethical issues faced by PR with community/peer researchers. We highlight two key issues: blurred roles of ‘insiders’ and ‘outsiders’ and challenges to rigour. We use several case studies taken from our work around sexual health (with details significantly changed to ensure the anonymity of the communities and projects involved) or developed for research training, in order to begin to address some of the wonders and hazards of ethical practice in PR. A quick peruse of the Handbook contents list and I can see several chapters that’ll be going on the reading list for my qualitative health research students and HDR candidates. If you want a copy of the chapter, let me know.

 

Talking about lesbian and bisexual women and sex… come along!

As part of the Lismore Women’s Festival (next week) I’m participating in a couple of events: a community forum on LBQ women and smoking and this…

Beyond The Dental Dam Poster
Poster for Beyond the Dental Dam event

 

I’ll be mining the extensive SWASH data set to share what we know about lesbian, bisexual and queer women’s sexual practice, and looking at what the research tells us about safer sex practice.

There are show bags! There’s a box for posting anonymous questions to be answered on the night by a sexual health expert. Come along – I promise you’ll learn something!

Australia’s longest running regular survey of lesbian, bisexual and queer women’s health is collecting data…

 

Every two years since 1996 the SWASH survey has been asking lesbian, bisexual and queer women in Sydney about their sexual health, mental health, experiences of violence and abuse, tobacco and drug use, alcohol consumption, and health service engagement. In 2010, the survey started running biennially in Perth (as WWASH), and in 2014/5 we ran a one-off survey in the Illawarra-Shoalhaven region of NSW.

Data collection for 2018 is now on as part of the Sydney’s LGBTI Mardi Gras events in February. Our peer recruiters will be at over 30 events so you’re sure to bump into one! We’ll be collecting data in the Northern Rivers and Coffs Coast region throughout March (if there is an event or group for LGBTI people/LBQ women, you’ll find us) . The survey will be online throughout March; I’ll promote the online survey when we’re open for business.

SWASH began as a collaboration between researchers and community health workers at the then AIDS Council of NSW, now ACON (Australia’s largest LGBTI health promotion organisation). Since 2009, Rachel Deacon and I have been the lead researchers. It is a massive, passionate, heartfelt, exhausting and super important piece of work for me and a whole bunch of people. Did I mention it is unfunded?

I’m going to be blogging about SWASH over the coming months. I’ve been thinking about what it means to be a community-engaged project. What promises do we (implicitly?) make to community that we will ensure they can record their experiences and that we will then reflect those experiences back to them in our analyses (having so many conversations about this lately). We’re going properly online this year so that is bringing up lots of things to think about, especially methodological issue around sample claims. I am so excited that we are going to be seriously on the ground is the Northern Rivers and Coffs Coast region of NSW, and I want to blog about my experiences and post lots of pics – we’ll be holding some events (like this forum on smoking).

Check out all out the SWASH/WWASH outputs to date here https://juliemooneysomers.com/research/#SWASH

(Image supplied by ACON; features survey recruiters at Fair Day 2016).

 

Community forum: lesbian, bisexual and queer women and smoking.

I have the honour of participating in this up coming forum at the University Centre for Rural Health in Lismore (northern NSW), co-sponsored by ACON and part of the Lismore Women’s Festival. We’ll tell you want we know, answer your questions and hang around afterwards to hear your perspectives. I’m in Lismore for a couple of events (I’ll be talking about LBQ women and sex at the Country Women’s Association Hall on the Wednesday evening…) and we’re running SWASH Northern Rivers and Coffs Coast throughout March. Come along to one or all of the events if you’re Northern Rivers based. LBQ Women and Smoking Research Seminar 08_03_2018 (002)

‘Except as required by law’: Australian researchers’ legal rights and obligations regarding participant confidentiality

Researchers’ promises of confidentiality are often easily and genuinely made. However, our experience in research ethics review (Julie through an NGO-run ethics review committee; Anna through formally constituted university and hospital human research ethics committees), in qualitative research and in teaching qualitative research ethics has led us to think about the limits of these promises.

Australian researchers generally rely on the National Statement (National Health and Medical Research Council, 2015) and Human Research Ethics Committees (HRECs) for guidance around ethical and legal conduct in research. For example, Chapter 4.6 in the National Statement notes that researchers may discover illegal activity and guides researchers and HRECs to consider what researchers might be obliged to disclose in a legal situation and how to best protect (and inform) participants of this threat to confidentiality.

The National Statement is currently under revision (National Health and Medical Research Council, 2016) and the review submitted for public consultation in late-2016 contains a proposal to include additional information on “Disclosure to third parties of findings or results” in Section 3 of the National Statement. Here the NHMRC explicitly state that: “There can be situations where researchers have a legal, contractual or professional obligation to divulge findings or results to third parties”. That is, researchers should concern themselves not only with the legal implications of revealing potential illegal activity, but any instance in which they may be asked to break participant confidentiality.

The recent review of the National Statement extends the NHMRC recommendations around potential data disclosure in a number of ways: it makes much more explicit that researchers (as opposed to HRECs or institutions) are responsible for understanding the risks to patient confidentiality: “researchers should be aware of situations where a court, law enforcement agency or regulator may seek to compel the release of findings or results”. Researchers are expected to anticipate legal risks to participant confidentiality by: identifying “(a) whether, to whom and under what circumstances the findings or results will be disclosed; (b) whether potential participants will be forewarned that there may be such a disclosure; (c) the risks associated with such a disclosure and how they will be managed; and (d) the rationale for communicating and/or withholding the findings or results and the relative benefits and/or risks to participants of disclosure/non-disclosure”. And, researchers should advise participants on legal risks to confidentiality and how they will be handled: “(a) have a strategy in place to address this possibility; (b) advise participants of the potential for this to occur; and (c) advise participants as to how the situation will be managed”.

For many researchers in health, legal risks are a very vague reality and legal intervention a remote threat. They may feel confident that their research does not and will not uncover illegal activity, or that their data would simply be irrelevant to a legal case. Or they may feel confident that they have taken sufficient steps to protect their participants’ confidentiality by following guidelines; researchers working in illicit drug use, for example.

Many Australian HRECs articulate the NHMRC guidelines on legal risks of disclosure to third parties by requiring that researchers inform participants that any data collected during research will kept confidential, “except as required by law”. In keeping with the ethical concept of informed consent, participants are thereby warned that researchers are not able to unconditionally offer confidentially. It has become clear to us that the intention of this phrase, to flag the legal limits of confidentiality, is not well understood by researchers (Olsen & Mooney-Somers, 2014).

The National Statement details some aspects of human research that is subject to specific statutory regulation however stresses that compliance with legal obligations is not within the scope of the National Statement: “It is the responsibility of institutions and researchers to be aware of both general and specific legal requirements, wherever relevant”. Moreover, in the document we are directed that it is not the role of a HREC to provide legal advice. It is relatively rare for Australian HRECs to provide explicit guidance on the relevant legal obligations for researchers, including: how they differ across jurisdictions; what protective strategies researchers could employ to better protect patient confidentiality; or how to best inform participants about the risks of legal action (Some useful HREC-produced resources are Alfred Hospital Ethics Committee, 2010; QUT Office of Research Ethics and Integrity, 2016) Criminology scholars have (unsurprisingly) considered these issues in their own field (Chalmers & Israel. 2005; Israel, 2004; Israel & Gelsthorpe, 2017; Palys & Lowman, 2014).

We believe there are real risks to participants, researchers and research institutions.

Recent international cases of research dealing with illegal activity becoming subject to legal action include The Belfast Project/The Boston Tapes (BBC News, 2014; Emmerich, 2016; Israel, 2014) and Bradley Garrett’s ethnographic work with urban explorers (Fish, 2014; Times Higher Education, 2014) (See also Israel & Gelsthorpe, 2017). On the whole, legal action was anticipatable in these cases as they involved illicit activities and the legal action was driven by law enforcement interest. In some instances, researchers took extensive steps to protect participant confidentiality. In other cases the promise of absolute confidentiality seems a little naïve (and in our opinion, perhaps negligent).

Perhaps of more concern are cases in which legal action was instigated by interested others, not law enforcement. Of particular interest to us are recent cases of tobacco companies using Freedom of Information laws in Australia to obtain research data from Cancer Council Victoria on young people’s attitudes to and use of tobacco, and an earlier attempt to seek data on adults from Cancer Council NSW (McKenzie & Baker, 2015; Schetzer & Medew, 2015). As these cases do not involve illegal activity, it is much less likely that researchers could have anticipated the specific legal actions that undermined participant confidentiality. (The tobacco industry has taken these actions in other countries (Hastings, 2015; McMurtrie, 2002)).

Our point here is that the promise of confidentiality should never be casually made. Researchers have an ethical obligation to think through what “except as required by law” may mean for each particular research project. Although it has been argued elsewhere that as professionals, researchers should be provided the same participant confidentiality rights as doctors and lawyers (Emmerich, 2016), the current state of affairs is that research data is not (necessarily) safe from legal, contractual or professional obligation to divulge findings or results to third parties.

Written by Anna Olsen (Research School of Population Health, ANU) & Julie Mooney-Somers (Centre for Values, Ethics and the Law in Medicine, University of Sydney)
Neither of us are lawyers and, as such, our interpretations are as social scientists and HREC members. Interested lawyers and legal scholars are encouraged to contribute!

References:
Alfred Hospital Ethics Committee. (2010, Updated September 2016). Alfred Hospital ethics committee guidelines: Research that potentially involves legal risks for participants and researchers. Retrieved from https://www.alfredhealth.org.au/contents/resources/research/Research-involving-legal-risks.pdf
BBC News. (1 May 2014). What are the Boston tapes? Retrieved from http://www.bbc.com/news/uk-northern-ireland-27238797
Chalmers, R., & Israel, M. (2005). Caring for Data: Law, Professional Codes and the Negotiation of Confidentiality in Australian Criminological Research. Retrieved from http://crg.aic.gov.au/reports/200304-09.pdf
Emmerich, N. (9 December 2016). Why researchers should get the same client confidentiality as doctors. Retrieved from https://theconversation.com/why-researchers-should-get-the-same-client-confidentiality-as-doctors-69839
Fish, A. (23 May 2014). Urban geographer’s brush with the law risks sending cold chill through social science. Retrieved from https://theconversation.com/urban-geographers-brush-with-the-law-risks-sending-cold-chill-through-social-science-25961
Hastings, G. (31 August 2015). We got an FOI request from Big Tobacco – here’s how it went. Retrieved from https://theconversation.com/we-got-an-foi-request-from-big-tobacco-heres-how-it-went-46457
Israel, M. (2004). Strictly confidential? Integrity and the disclosure of criminological and socio-legal research. British Journal of Criminology, 44(5), 715-740.
Israel, M. (6 May 2014). Gerry Adams arrest: when is it right for academics to hand over information to the courts? Retrieved from https://theconversation.com/gerry-adams-arrest-when-is-it-right-for-academics-to-hand-over-information-to-the-courts-26209
Israel, M., & Gelsthorpe, L. (2017). Ethics in Criminological Research: A Powerful Force, or a Force for the Powerful? . In M. Cowburn, L. Gelsthorpe, & A. Wahidin (Eds.), Research Ethics in Criminology and Criminal Justice: Politics, Dilemmas, Issues and Solutions. London: Routledge.
McKenzie, N., & Baker, R. (15 August 2015). Tobacco company wants schools survey for insights into children and teens. The Age. Retrieved from http://www.theage.com.au/national/tobacco-company-wants-schools-survey-for-insights-into-children-and-teens-20150819-gj2vto.html
McMurtrie, B. (8 February 2002). Tobacco companies seek university documents. Chronicle of Higher Education. Retrieved from http://www.chronicle.com/article/Tobacco-Companies-Seek/6959
National Health and Medical Research Council. (2015). National Statement on Ethical Conduct in Human Research (2007) Retrieved from https://www.nhmrc.gov.au/printpdf/book/export/html/51613
National Health and Medical Research Council. (2016). Public consultation on Section 3 (chapters 3.1 & 3.5), Glossary and Revisions to Section 5: National Statement on Ethical Conduct in Human Research (2007). Retrieved from https://consultations.nhmrc.gov.au/files/consultations/drafts/ns-section3-public-consultation.pdf
Olsen, A., & Mooney-Somers, J. (2014). Is there a problem with the status quo? Debating the need for standalone ethical guidelines for research with people who use alcohol and other drugs. Drug Alcohol Rev, 33(6), 637-642. doi:10.1111/dar.12140
Palys, T., & Lowman, J. (2014). Protecting research confidentiality: What happens when law and ethics collide. Toronto: Lorimer.
QUT Office of Research Ethics and Integrity. (10 Novembeer 2016). Participants and illegal activities. Retrieved from http://www.orei.qut.edu.au/human/guidance/illegal.jsp
Schetzer, A., & Medew, J. (20 August 2015). Cancer Council spends thousands fighting big tobacco over children’s survey data. The Sydney Morning Herald. Retrieved from http://www.smh.com.au/national/cancer-council-spends-thousands-fighting-big-tobacco-over-childrens-survey-data-20150820-gj3nh7.html
Times Higher Education. (5 June 2014). Place-hacker Bradley Garrett: research at the edge of the law. Retrieved from https://www.timeshighereducation.com/features/place-hacker-bradley-garrett-research-at-the-edge-of-the-law/2013717.article

This article was originally published on Research Ethics Monthly. Read the original article. It can be cited as: Olsen A, and Mooney-Somers J. (2017, 24 February) ‘Except as required by law’: Australian researchers’ legal rights and obligations regarding participant confidentiality. Research Ethics Monthly. Retrieved from: https://www.ahrecs.com/human-research-ethics/except-required-law-australian-researchers-legal-rights-obligations-regarding-participant-confidentiality

Why I always get an ISBN for my research reports

Mooney-Somers, J, Erick, W, Brockman, D, Scott, R. & Maher, L (2008). Indigenous Resiliency Project Participatory Action Research Component: A report on the Research Training and Development Workshop, Townsville, February 2008. National Centre in HIV Epidemiology and Clinical Research, The University of New South Wales, Sydney, NSW. ISBN: 978 0 7334 2647 6.

See that bit at the end, that’s my first ISBN. I can’t recall where I got the notion from, and I wonder now at my presumptuousness. I don’t think it was standard practice in my research centre to get ISBNs for research reports. But I had just come out of a horrid job that I’d stayed put in to get publications (it didn’t really work). I was in a new job and determined to get as much on my CV as I could. The first output was a report on a training workshop. I was thoroughly engrossed in the methodology we were using (participatory action research) and genuinely interested in how it worked in practice. So writing about our process was something I was into, but it was also a publication. The ISBN though, that was kind of surprising.

I’m now the proud owner of 7 ISBNs.

For those who don’t know, an ISBN stands for International Standard Book Number. It is a unique code assigned to your ‘book’. It is super easy to get one if you know how and a complete mystery if you don’t (typical university*). You don’t need one; I suspect most reports published by academics don’t have one. Let me tell you why you should use them.

An ISBN “makes your book more discoverable” says the Australian provider of ISBNs, Thorpe-Bowker. Unsurprisingly a unique code means no confusion about which title is your book if it also has its own code attached. Well. I’m not entirely convinced this is a big deal for academics (honestly, Google your intended title to make sure it is unique-ish).

The much more compelling reason?

An ISBN means your book exists, it gets listed in registries. In the case of the report above, I got a call out of the blue from a library network asking if they could buy (buy!) several copies. Seriously, how did they even know it existed? It had an ISBN.

And then there’s this…

Copyright Acknowledgement

And this

doc20150115200039_Page_1

You see an ISBN means your work is published and that makes it subject to legal deposit rules (a quick look at Wikipedia suggests this is an international standard).

Legal Deposit is a requirement under the Copyright Act 1968 for publishers and self publishing authors to deposit a copy of works published in Australia with the National Library and when applicable, the deposit libraries in your home state. Legal Deposit ensures that Australian publications are preserved for use now and in the future. National Library of Australia (for more read this http://www.nsla.org.au/legal-deposit-australasia)

In NSW a publisher (e.g. your university if they secure the ISBN) is required to send copies of published material to The National Library of Australia, The State Library of New South Wales and The NSW Parliamentary Library. And because the publisher of my work is The University of Sydney, I have to send a copy to them as well.

That’s an very easy way to get my work into the Parliamentary library.

A major struggle in one of my research area’s (lesbian, bisexual and queer women’s health) is the persistent charge that there is no evidence base. The charge is wrong; there is considerable evidence of disparities in health outcomes out there, but it is a hard perception to shake. So getting our biennial reports of the longest running (in the world) survey of lesbian, bisexual and queer women’s health on to the shelves of policy makers… That’s a win. You never who might stumble across them.**

*Your institution’s library should be able to help or look for the “Legal Deposit Officer”.

*I know, I know, policy-makers Goggle everything. I put them all online too – the University archive, this blog, and often twitter announcements. I’m all about covering the bases.

Earning the LGBTI (or being deliberate when describing our research): Reflections on the 9th National LGBTI Health Conference

I’ve just attended the 9th National LGBTI Health Conference in Canberra. The conference organisers had a very progressive approach to communicating with delegates – for the few months leading up to the conference they sent out short announcements (blog posts) about the papers to be presented, along with the more usual updates with delegate information. We also received a post called, “A safe and inclusive conference”. Not something I’ve ever received from a conference but very much appreciated. It has lots of useful thought provoking and anxiety relieving advice. From questions about how we re-tell the personal stories we hear at the conference, through inclusive language to tips on how to avoid misgendering. Honestly, this is useful life advice.

One point they raised resonated with me. In a section on ‘LGBTI’ and inclusion they said:

“Deliberateness: How can we make sure that we move from habitually using all five letters to earning each of them? Is it appropriate to use all five letters or does the topic we are discussing apply more specifically only to some of these populations and need rethinking for some populations?”

Recently, for a project on LGBTI smoking, my colleague Israel Berger and I reviewed published evaluations of smoking cessation interventions for LGBTI individuals (19 studies). We found that:

* All studies included gay men
* About two thirds of studies used general terms like ‘LGBT’ but didn’t necessarily include every group.
* About two thirds of studies mentioned bisexual participants as targets/participants, but there was insufficient reporting of bisexual status. Indeed, several studies used the term LGBT or LGB but then only referred to lesbians and gay men effectively erasing bisexual people.
* About two thirds of studies were nominally open to women, but only a quarter of those studies had women participants (of those that reported gender at all)
* A quarter of studies mentioned trans people, but trans people only represented 3% of participants (of those that reported trans status).
* None of the reviewed studies targeted or reported intersex participants.

So despite two thirds using general terms suggesting their intervention was developed and evaluated for LGBT people, few had earned this terminology. The problem here should be obvious – it looks like we know quite a bit about how to develop and deliver smoking cessation programs to L+G+B+T people. When in fact, we’re on shaky ground for most of these letters.

At the conference I heard several examples of researchers claiming LGB/T/I when their sample was no where near that. I wonder why we do this. And I say “we” deliberately as I know I have done/do this. The conference organisers’ interpretation of this practice is, habit. And so they frame their advice in terms of being deliberate, mindful of the language you use (I appreciate the list of dos in their guidance where others would have a list of do nots). But I wonder if we also over claim inclusiveness because we feel our research should be applicable to all the letters. Even if in practise we can make no such claim. Or do we think the gesture to inclusiveness is sufficient? Or (worse) do we think the whatever we find for some letters will apply to them all?

We had an interesting discussion at the conference about how to earn the letters. For example, should we design our surveys so all the members of our LGBTI communities feel recognised and able to participate in ways that capture their experiences? A good idea but is it enough? The two surveys I’m involved with seek to do this, we ask a question about trans status and a separate question about intersex status (the letters I think that are most commonly claimed but not earned).

What if I don’t do any targeted recruitment? To go back to the review of smoking cessation studies – most were nominally open to women but had low numbers that suggest to me a failure to engage and/or failure to provide culturally safe programs for women. So is saying trans and intersex people are welcome to do my survey – look! I wrote questions –  earning the T or the I? I’d find this position hard to stand behind.

What if I have the separate questions but my question responses don’t adequately reflect the diversity of trans or intersex people’s lived experiences? Have I earned it? Hard to argue yes. I’ve had some feedback that one of my surveys does this so my colleagues and I will think carefully about the claims we make about the people our research findings reflect.

What about if during analysis I collapse the beautifully crafted and community-consulted question responses because the cell sizes are too small to be statistically meaningful. Does this make the original attempt tokenism? I am worried that it might be. Yet reporting the % of trans and intersex identifying people but doing no further analysis is what I do in my survey research. I feel uncomfortable but I’m not sure what else we can do.

At the conference wrap-up, rapporteur Terence Humphreys (from Twenty10) said” ‘We are entering a new and nuanced era of deliberately engaging with peoples bodies, genders, sexualities, +identities”. This echoes some work colleagues and I did in relation to same-sex attracted women. We argued that there are important and meaningful differences under the ‘same-sex attracted’ umbrella and this demands a nuanced approach to health promotion. I think this is the better response to the conference organisers’ call for deliberateness. Claim the letters that do reflect the population your research is about, be transparent about the boundaries. And own who is missing.

It’d be great to hear about how you earn the LGBTI in your research…

From culture shocked to fearless adventurer – introducing students to qualitative research

Over this past semester I’ve introduced about 250 postgraduate students to qualitative research. Last year it was about 200. Actually through running a postgraduate coursework program in qualitative health research for 5 years and teaching several qualitative methods courses for community researchers there have been quite a few over my relatively short teaching career. I’ve taught people who are seeking to use qualitative methods in a research project and those who are only learning it because it is mandated by their degree (e.g. I teach the core unit in qualitative methods for a Master of Public Health).

In the first few years of teaching qual research I noticed something interesting. In the early part of the course I’d look into the auditorium and see some pained expressions, students shifting uncomfortably, and at its most extreme, open hostility towards qual research. Questions would burst out of students about bias or generalisability. They’d come up to me after a lecture and admit they had some worries. Most were genuinely struggling to understand the logic of qualitative research, but felt like they were failing.

About a third of the way through one multiple-day course something would click and they’d get it. In the early days I only taught face-to-face so there’d be a palpable buzz in the air. I’d know we were going to be ok when they’d start making jokes about being a realist or a social constructionist. Or when they’d make their epistemological assumptions explicit when it wasn’t necessary. Or when I’d overhear a conversation in the tea break about sampling and saturation. Phew! A few wouldn’t get it and the bafflement would continue. They’d ask fundamental questions I thought we’d addressed (‘but isn’t it biased?). I’d see their peers glance at them with embarrassment or irritation.

Most of my students are encountering a qualitative paradigm for the first time. They usually have a health or medical background. Many are health practitioners. Few were exposed to social science in their undergraduate degrees. It is unsurprising then that they are baffled at qualitative research:

“call[s] into question students’ taken-for-granted assumptions about so many things: the purpose of research, the uses of method, the nature of knowledge, and what it means to be human” (Webb & Glesne, Teaching qualitative research, 1992)

Indeed I received the following written comment from one student after our first lecture: “qualitative research may lead you to question the very nature of reality :)” I hoped the smiley face meant that they were ok with this.

Eventually I connected what the students were experiencing to my own experience of moving countries. When my partner and I moved to Australia in 2000 we bought a book called “Culture Shock! Australia”. (ours was the original 1992 edition, that cover is so much more evocative then the most recent edition).

Culture Shock by Isla Sharp (1992 cover)

I’ve starting using culture shock and address it explicitly at the start of my introduction to qual research course. I tell them my own story:

When I moved from London to Sydney I experienced culture shock. I was surprised as everything looked pretty similar (language, driving on the left) but some pretty small differences made me feel out of place – I didn’t understand the rules, I felt like everyone could tell I wasn’t from here. I felt home sick (I understood the rules there). Not understanding and not fitting in sometimes made me frustrated – or angry. The Australian ways seemed stupid, wrong, old fashioned! This may be familiar to some of you who have travelled or spent time with overseas visitors.

And I link this to what some of them may experience during the course:

Well, I’m going to take you on a bit of a journey on this course. For many of you it will be a new land – and there will be ideas and ways of doing things that are different to how you’re used to doing them. New ways that might challenge things that you take for granted. Sometimes when I take people on this journey I see the same kind of culture shock I experienced. By the end of the course they’ve usually started to feel more at home.

And then I give them permission to be challenged – culture shocked – and some tips from a fellow traveller:

So I’m giving you a heads-up and some advice: Bring your curiosity to this new land. Be interested in how they do things here. Notice how they are different. Pay attention to when you start thinking – that’s stupid/not the right way to do it. These feelings are useful – they signal when you are moving across paradigms or belief systems. Most of you will be used to thinking in a particular research paradigm – let’s call it quantitative – where the community shares particular beliefs, assumptions, values and ways of doing things. I’m not asking you to abandon your paradigm (your community, your sense of home), I’m asking you to recognise that you are seeing the world from this perspective.

http://www.dogonews.com/2012/10/7/mixed-breed-mutts-quest-to-save-other-dogs-turns-into-a-world-woof-tour

Two students reflected on these ideas in written comments after the first lecture: “being a person used to RCT, this is very interesting but worried if I can cope” and “Coming from a science background it was helpful to know that the shift in paradigm to qualitative is a challenge”. I’m trying to encourage the students to be fearless adventurers. I came across the following quote today and it helped me understand another aspect of the culture shock experience.

It is only when you meet someone of a culture different to yourself that you begin to realise what your own beliefs really are. (George Orwell, The Road to Wigan Pier, 1939)

I like the idea that being culture shocked creates a distance that allows you to see yourself. I plan to add this next year.

How can ethics committees judge whether researchers are competent to conduct qualitative research?

[check out some more thoughts at the end of the post]

I’ve just taught a session on ethics in qualitative research, part of an intensive course designed to give attendees an appreciation of the philosophical and ethical issues underlying research involving human participants. There was good representation from those who called themselves qual researchers, those who had done some qual research, those who felt comfortable that they knew a bit about it and finally, those who had only been exposed through sitting on a Human Research Ethics Committee (HREC).

Many of the concerns that qualitative research raised for HREC members were driven by the sense that the particulars of qualitative research are unspecified and/or unspecifiable. HRECs can’t be sure who exactly researchers will talk to and what precisely they will talk to them about. It sounded like HREC members felt they can’t exert the control they think is necessary to protect participants. I think they are right. Much qualitative research involves a flexible iterative process where the design emerges, the research questions are refined, the interview questions are specified, revised and often abandoned, all post-ethical review. Indeed, the precise focus may not emerge until the research is well on its way. One HREC member who sees a lot of research proposals about children with chronic illness felt very protective towards potential participants. Already burdened with illness, the thought of just anyone being ‘let loose’ on them, with a vague set of research areas rather than a set of approved questions, was pretty discomforting. In the absence of specifying the ‘who, how and what’ the participants in my training felt they had to simply trust the researcher knew what they were doing.

HRECs officially do have a responsibility to determine if the researchers they are ‘letting loose’ know what they are doing. The National Statement on Ethical Conduct in Human Research (2007) says research that has merit “is: (e) conducted or supervised by persons or teams with experience, qualifications and competence that are appropriate for the research.” So how do HRECs make a judgement about appropriate qualitative experience, qualifications and competence?

In judging appropriate experience, qualifications and competence I think HREC should start with: Who is the qualified qualitative researcher on the team who can undertake this work. Is evidence of formal training in qualitative research too high a bar? Absolutely not! A Master of Applied Epidemiology or Biostatistics is official recognition of competence; that is how it is understood when it appears on an ethics application. Why not expect the same of researchers planning to undertake a qualitative project? It is not like it is that hard to get some training. [Gratuitous plug coming] I run a really very good postgraduate course and offer a range of short courses. There are short course offerings in Australia through ACSPRI or researchers can do an online course. We’ve come a long way since qualitative methods had to be self-taught or when the attitude of ‘how hard can it be to do a few interviews’ was acceptable?

In the absence of a formal qualification how else can a HREC judge competence? I don’t have a qualification; I covered qual methods briefly in my undergraduate degree, used them extensively for my PhD; have years of practical experience and have received supervision from experienced qualitative researches. I might convince a HREC of my competence by saying something like:

“Dr Mooney-Somers has over 20-years of experience in the development and use of qualitative research in health and psychology, including in her PhD research. She has employed several qualitative methodologies, and conducted research with a range of populations including young people and Aboriginal and Torres Strait Islander people and on sensitive topics including youth cancer and sexually transmitted infections. Dr Mooney-Somers has been the principal lecturer on the Sydney Qualitative Health Research postgraduate program for five years, taught qualitative research to community researchers and supervised students undertaking qualitative methods from Honours to PhD level.”

There are other clues to the presence or absence of appropriate experience, qualifications and competence. HRECs might look for the following:

    • Do the researchers seem to understand qualitative research? Red flags for me include: the research aims are not broadly about meaning, understanding, experience, or process; surveys as the only method (unless there is a lot of free text questions); references to measurement; claims about representative sampling or generalising findings to the general population.
    • Are they drawing on their experience to inform the proposed practice? “In the past I have used ranking exercises in focus groups to successfully engage young people in conversations about X”
    • Do they present a methodology that justifies their proposed actions? Are they just gesturing towards a branded methodology or drawing on a specific version/methodologist? Are the methods and language consistent with the claimed methodology? They need not use a branded methodology, I’m looking for a coherent justification that ties the research aims/questions to the methods and the outcomes. “In line with our ethnographic methodology (ref) adopted for this project we propose to conduct observations in three sites” “Following Charmaz (2014) this constructivist grounded theory study will…”
    • Who is actually generating the data and are research assistants receiving training in interviewing/facilitating focus groups?
    • How is the data analysis process described – anything that looks like “data from interviews will be transcribed and analysed thematically” is a massive red flag. It suggests they have no idea how they will analyse the data, or that an analysis strategy is not part of a methodological framework.

Additional thoughts (18 June 2015)

I sit on a research ethics committee for a non-governmental organisation. I read two applications yesterday that concerned qualitative research. Both did pretty poorly at demonstrating they were prepared by teams who had appropriate qualitative experience, qualifications and competence (although one was prepared by very experienced researchers). I’d like to add to my original list of clues to the absence or presence of qualitative competence:

  • Is there alignment between the research questions and the data generation strategy? Between the research questions and the sampling strategy? Between the research questions and the analysis plan? That is, are they generating data and analysis that will answer the questions?
  • Training is in my original list but I was really struck again by its importance in an application from a student. Is it clear who is conducting the data generation? Do they apear to have appropriate experience, especially if dealing with sensitive or complex issues? If inexperienced (eg a student), is the supervisor experienced? What plans are there to provide training and ongoing guidance around data generation? You can support a novice interviewer through short courses, practice interviews (consider video and review), an experienced interviewer reviewing early interview transcripts, and regular debriefing.
  • Do the researchers demonstrate an awareness of and handle the specific ethical issues that qualitative research produces? What are those issues, I hear you say… that calls for another blog post!