Seeking a researcher to conduct semi-structured interviews with clinicians and LGBTI people

Study: LGBTI Comorbidity study

Background: LGBTI people experience a number of specific risk factors for substance use and mental health problems, including elevated social stigmatisation and social stress, lower levels of parental support, and higher rates of abuse and victimisation. LGBTI people have higher rates of substance use and mental health problems, and are more likely to have comorbid disorders. However, we know little about LGBTI people’s experiences of seeking and receiving treatment.

This study aims to engage substance use services with a high caseload of LGBTI people to explore service users’ and clinical staff experiences with receiving and providing treatment for substance use and mental health problems. We are conducting this research to improve access and delivery of substance use and mental health treatment for LGBTI people. The research is being conducted by researchers at University of Sydney and The National Drug and Alcohol Research Centre, in partnership with ACON.

Tasks: The researcher will be responsible for managing and conducting data collection, specifically:

  • Conducting interviews with 10 x LGBTI AOD service users and 10 x AOD treatment providers
  • Screening potential participants using eligibility screener questionnaires
  • Scheduling interviews and arranging travel reimbursement (for service users)
  • Consenting participants, referring to additional support services if required (referral list supplied)
  • Managing interview transcription and quality checking
  • Monitoring recruitment targets and liaising with the research team
  • Ensuring contact details and interview records are kept secure and confidential

Selection criteria:

Essential experience:

  • Qualitative social/health research
  • Semi-structured or narrative interviews
  • Mental health or alcohol and other drugs service provision or research (ideally interviewing)

Desirable experience:

  • Interviewing or working with LGBTI people

Pay rate: $50.20 per hour (Level 5/1 professional staff)

Duration: 100 hours in total across June, July, August.

Contact: For further details please send me your CV and brief responses to the selection criteria – Julie.MooneySomers AT sydney.edu.au

Applications must be received by 9am Monday 20 May 2019

Thinking about SWASH as a community-engaged research project: the feedback

I’m writing a series of blogs about SWASH, a repeated cross-sectional survey of the health and wellbeing of community-connected lesbian, bisexual, queer (LBQ) and other non-heterosexual identifying women in Sydney. It is run by a collaboration of researchers (myself and colleague Rachel Deacon) and ACON Health (Australia’s largest community health organisation specialising in LGBTQ health). I’ve been involved for nearly a decade, but SWASH has been running as a community-engaged research project since it inception in 1996. Seriously, 22 years… that makes it an interesting case study. I’m blogging about how we do things and reflecting on why it matters that we do things the way we do. In the first blog, we had just completed the draft 2018 report and were about to present it to ACON staff. This blog is reflecting on that meeting.

Multipel covers from SWASH research reportsWe couldn’t present all the findings (we have ~50 questions) so we stuck to new questions, topics I know ACON is currently doing work around (breast health, AOD treatment service), and issues we’ve been tracking for some time (eg smoking).

New questions: this was the first time health promotion staff had access to local and timely data on suicidal ideation and self harm. We used the same questions as the Australian Longitudinal Survey of Women’s Health; the last time they reported on self harm and suicidal idealtion among LBQ women was over a decade ago. ACON have been asking for these questions for a long time. Rachel and I have said no, concerned women may not be in a safe place to deal with whatever these questions brought up – they may be answering the survey at a large community event during the day or at an evening event where they might consume alcohol or drugs. ACON asked again this year, arguing strongly that we need to normalise asking questions about mental health. Staff developed a support card to give to everyone recruited and trained the survey recruiters to be aware of these issues. And the outcome was data that could support and inform ACON’s work; high quality empirical data that could convince stakeholders of the need for targeted work. It is hard to overstate how difficult it is to get recent data on many health issues for lesbian, bisexual and queer women in Australia.

Repeated questions: We spent quite a lot of time talking about a lack of change in a health screening behaviour we’ve been tracking for several years; this behaviour is core business for ACON. SWASH captures data directly from the people ACON’s work targets, so knowing which section of the community is not engaging in screening, including women we know are at increased risk because we also have that data, can feed directly into program development. We talked about changes in repeatedly presented questions such as smoking (down) or acute psychological distress (up), and findings that need further analysis. SWASH shows how intertwined sexuality and age are; bisexual identity is more common in younger women and lesbian identity more common in older women. So knowing if variations in psychological distress are explained by age or sexuality or both is important.

A feedback session with a community-engaged organisation is valuable market testing. If there is a lot of sensitively around an issue then we can be more thoughtful how we talk about it, even work directly with staff on language. If there is a community conversation already happening, we can help advance it by adding additional narrative to the report comparing our findings to the general population, discussing the findings in relation to other LBQ studies, or link the findings to policy or program work ACON is engaged in. Self harm is a great example; our conversation made think about the language we used in the report and how important it was to acknowledge that we don’t know how respondents understand the term (the question aims to capture suicidal intent and non-suicidal intent). Do the respondents reporting engagement in sado­masochism with blood (practices such as cutting, piercing, whipping or fisting) see these practices as self-harm? It is important that we frame findings safely, meaningfully and in ways that will engage people.

A feedback session is also about solidarity and accountability. Rachel and I can make decisions that alienate, enrage, enthuse, or interest the community, but we might never hear about it. Although our contact details are readily available, I can’t recall a single email from community expressing dissatisfaction (or satisfaction!). I have very rarely been bailed up in person and my ethics committee has never received a complaint. ACON on the other hand is super accessible via social media. Staff are accessible at community events and because they are also often members of the LBQ community, people can approach them when they are ‘off the clock’. It is ACON staff who have to defend, explain or take any flack for sampling, questionnaire or analytical decisions Rachel and I make. It is important that we hear community feedback.

At our meeting we talked through methodological decisions and asked staff what they thought. For example, we’ve excluded some of our online sample for a solid methodological reason, we explained why, and discussed staff concerns about what this meant for those people who had filled in surveys. In another case, we said we can do x or y with good reasons either way, what do you think? Knowing what might be politically sensitive means we can include explanations to help community understand our decisions or the limitations of the survey, and prepare staff for community conversations. It also allows us to acknowledge the responsibilities staff as the bridge with community.

Changes in social networks are associated with lesbian, bisexual and queer women quitting smoking

We’ve just published a paper in Drug and Alcohol Review based on formative survey research we conducted for the Smoke Free Still Fierce smoking cessation campaign (ACON developed with funding from Cancer Institute NSW). We produced a community report on the survey but this is a more sophisticated analysis that aimed to understand the differences between LBQ women who smoke and those who had recently quit.

KEY FINDING: LBQ women who had recently quit were less likely to have close friends who smoked and more likely to have a non‐smoking (or no) partner.

TAKE HOME MESSAGE: To address the persistently high rates of smoking among LBQ women we need to understand and address the significance of partners and friends in supporting smoking AND cessation efforts.

Kolstee, J. , Deacon, R. M., Haidar, S. , Gray, J. and Mooney‐Somers, J. (2018), Changes in social networks are associated with lesbian, bisexual and queer women quitting smoking: An analysis of Australian survey data. Drug Alcohol Rev. https://doi.org/10.1111/dar.12873

FREE ACCESS TO READ THE ARTICLE HERE (if you need to download and can’t get past paywalls ask me for help)

If you want to know more about our work on lesbian, bisexual and queer women’s smoking, check out our analysis showing that over a decade smoking rates in Australia had only slightly decreased in LBQ women engaged with LGBT communities and not reduced at all among younger women. We also showed that LBQ women who smoked had fewer economic, social and psychological resources and reported higher levels of alcohol and illicit drug use. Or look at our systematic review of the outcomes and characteristics of interventions designed to reduce LGBTI smoking (take home: they appear to be effective). We’ve more work coming…

Photo by Taylorhatmaker, used with permission

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

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…

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!

Putting my argument up front would have made my presentation better

I attended a workshop by Nick Hopwood on presenting qualitative research. It was full of tips and strategies – check out the storify – and useful frameworks; Hammersley’s framework for critical review of ethnography (reminding me again that I need to read Hammerlsey) and Kamler and Thompson’s framework for writing abstracts from their ‘Helping doctoral students write’ book (which I promptly ordered).

‘No’ by JDAC available at https://www.flickr.com/photos/jdac/15747357176 under a Creative Commons Attribution 2.0. Full terms at http://creativecommons.org/licenses/by/2.0.
‘No’ by JDAC available at https://www.flickr.com/photos/jdac/15747357176 under a Creative Commons Attribution 2.0. Full terms at http://creativecommons.org/licenses/by/2.0.

I’m a keen reader of Nick’s blog and have used his tips for conference presentations. For my last conference however, I failed to implement one: ‘turn it upside down’; that is, state my argument at the beginning rather than pull it all together at the end. This was because I love a good mystery novel and my co-presenter wasn’t keen.

At the workshop, Nick asked us to review a recent presentation in light of what we’d just learnt. I used this last conference presentation. And funnily enough, I could see how much better it would have been if I had turned it upside down. Here’s why.

The logic for turning the presentation upside down is that it helps you achieve your key motivation for presenting at all – give the audience a clear sense of your key take-home message. If someone pulls the plug on you 10 minutes in (maybe because the previous presenter rambled on), at least they know your argument. And Nick insists the audience is less likely to fall asleep. Luckily, I got the whole 12 minutes allotted at my conference presentation, and as far as I could tell, everyone stayed awake.

After the workshop three compelling reasons to ‘turn it upside down’ occurred to me.

First, if I’d made my big statement upfront then the audience might have been more engaged, curious as to how I’m going to convince them (i.e. the mechanism for ‘the audience is less likely to fall asleep’).

Second, it would have meant the rest of the content would be more likely to be relevant to that argument and not just self-justifying waffle about methods or demonstrations of how clever and well-read I am (no of course I didn’t do that).

The best reason I could think of? Making my argument up front would have given the audience time to digest it. Usually – and indeed in my case – the key argument is in the last slide or two. That gives them about a minute to catch it and process it before the chair calls for questions. This might be the reason for the measly post-presentation discussion at so many conferences. If I’d put it up front, they would have had a whole 10 or 11 minutes to think about my argument, in context, in relation to my data, and more importantly for engagement, in relation to their experience and knowledge of the phenomena. So I’m convinced by Nick’s advice.

But there is a problem. Putting your argument up front means you have to have one. I’m not being flippant here. How many qual presentations have you been to where the main game seemed to be to describe what participants said? You get to the end and think, well gee people really thought some stuff / felt some stuff / needed some stuff. But it can be a bit meh, you’re not sure what it all means, why it matters. I find this kind of qual research depressing; I am sure I have been guilty of it.

Making an argument is scary (people might disagree with you!). Arguments involve taking a stand, saying, this is how we should think about this phenomena. They require I work to persuade you, generally through presenting evidence, like my data analysis. If you think of it, data interpretation in basically an argument. I am claiming that mine is the best (or at least, most productive) way to understand what this participant means. Moving from description to interpretation can be a difficult things students to accomplish. It requires they develop confidence in their ability to interpret (not easy at all). Some tips I give my students:

Lyn Richards uses a great metaphor in her book ‘How to handle qualitative data’ for understanding the difference between data description and interpretation:

‘Somebody’s dead, they were shot and there’s a gun on the ground’ is the beginning of the detective’s questions. We hardly expect the enquiry to end with the facts of a dead body and discarded gun.

In her book ‘How to write a journal article in 12 weeks‘, Wendy Laura Belcher draws on a similar metaphor when talking about making arguments in papers:

Present evidence that supports your case, cross-examine evidence that doesn’t support your case, ignore evidence that is irrelevant to your case, and make sure the jury always knows whom you are accusing of what and why.

So, write the lawyer’s brief not the detective’s report. Can you imagine a prosecuting barrister standing up on front of the judge and jury and not telling them who they think did it? Or, to return to my topic, holding the punchline for the end? I would speculate that if you give the argument up front the audience starts doing some of the work for you – they know where you’re going so they are looking for the links. Hey’ that’s four reasons to put your argument first.

Last piece of advice from Wendy Laura Belcher to relieve you of some argument making anxiety:

Arguments don’t need to be unassailable or bullet proof, just interesting.