Making mistakes and owning them: How I submitted corrections to published papers and (currently) live to tell the tale

 

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by Dr. Lauren Robinson

It’s the nightmare scenario: you look back at an old bit of code and realize you’ve made a mistake and, to make matters worse, the paper has already been published. This year I lived that nightmare scenario. I had shared my code only to discover that a variable that should have been reverse scored (which boils down to multiplying the number by -1), wasn’t. It was a minor oversight that I’d made as a 1st year PhD student learning new statistics, I hadn’t caught the mistake until now, and, worse still, the code had been used in two papers I wrote simultaneously. I considered changing my name and hiding but as I had a postdoc and my mother claims to like me, I figured it was better to keep my current identity.

‘…the right decisions don’t come without risk….’

Reaching out to the senior author we knew there was only one solution: We had to redo the statistics and submit corrections. As an early career researcher, I was panicked. What if the results were drastically different, was a retraction (possibly two) in my future? Fear aside, a mistake was made, we had to own it, and if we were going to believe in scientific integrity then we had to show ours. It’s been my experience that the most difficult decisions, the ones that I’m truly afraid to make – those are the decisions I know to be right. But the right decisions don’t come without risk and I can’t pretend that I wasn’t, and continue to be, worried that not everyone would see this as a minor mistake. Science is competitive and the feeling of having to be flawless, particularly at this phase of my career, is a weight. As a woman in science I already have to fight to be taken seriously, to be seen as competent, and I had committed a sin, I had made an honest mistake that had been published, twice. Before I could find out the results of my mistake on my career, I had to find out their impact on my papers.

‘As a woman in science I already have to fight to be taken seriously, to be seen as competent…’

I somehow survived three painful hours while I waited to finish work at my postdoc and could get back to where I kept the study data. Upon sitting at my desk (liquid courage in hand) I redid the stats, anxious to find the results. Now look, I’m no slouch with numbers, I know what multiplying by -1 does to them, but panic overrode sense in that moment and I needed to see to believe. First paper: Flipped the direction of effect on a non-significant variable that remained that way. Okay, fairly minor, just requires that the journal update the tables. Second paper: Again, the only thing that changed was the direction of effect, though this variable had been and still was significant, means we had to adjust the numbers, a line in the abstract, and three sentences in the results. Not great, but as variables go it hadn’t even rated being mentioned in the discussion.

Okay, okay, okay (deep breaths, bit more whisky), this could be so much worse I told myself. I screwed up but hey, everyone makes mistakes, I was learning something new, I should’ve have caught it earlier, but it was caught now. Onto the next step, making the corrections, contacting coauthors, and letting the journals know. Time to really live by our ideals. But first! Another moment of panic while I wondered if I had made the same mistake in my two newest papers. Opening code, reading through, and…no, I hadn’t made the mistake again. Somewhere along the way I had clearly learned how to do these statistics correctly, I just hadn’t caught it while I was working on these two papers and had copy-pasted the code across them. Good news, I am in fact capable of doing things correctly.

‘I had lived my nightmare and it felt, as least in this moment…completely survivable…’

Writing the email to my coauthors wasn’t something that I was particularly looking forward to. “Oh hey fellow researchers that I respect and admire, I screwed up and am going to let the journals and the world know. PS, please don’t think less of me and hate me. Okay, thanks.” While that’s not what I wrote, that’s what it felt like. An admission of imperfection, shame, guilt, a desire to live under a rock. However, I’ve been blessed with caring and understanding collaborators, each of whom was extremely supportive. Next, I sent an email to the journals explaining the mistake and requesting corrections be published. Each journal was understanding and helped us write and publish corrections and that was it, it was done. I had lived my nightmare and it felt, as least in this moment…completely survivable. I had imagined anxiety and panic and battling my own shame and guilt. This…this was a feeling of stillness that I was not prepared for.

Prior to contacting the journals and writing this blog, I asked myself how much this would hurt my career. Would a small mistake cost me my reputation, respect, and future in the science I’d already sacrificed so much for? Would writing this blog and openly speaking to the fact that I had made a mistake only further the potential damage to career and respect? Would a single mistake, done at the beginning of my PhD and not since repeated, mean that others didn’t trust my science and statistics, not want to work with me? Would I trust my own skills, and more importantly, myself, again? There was so much uncertainty and so little information available on this experience, yet mistakes like this must happen more than we think, they just go unspoken.

‘…genuine mistakes? We have to make those acceptable to acknowledge, correct, even retract, and speak about, to learn and move on from.’

This, this is the crux of a problem in science, there are unknown consequences of acknowledging and speaking openly about our mistakes and, by failing to do so, we only further increase the chance that mistakes go uncorrected. Let’s hold those that perform purposeful scientific misconduct accountable, but genuine mistakes? We have to make those acceptable to acknowledge, correct, even retract, and speak about, to learn and move on from them. Those who don’t learn from their mistakes? Well, they may be doomed to face the consequences. As a note, if we’re going to move towards openness and transparency in science then we need to be particularly careful that those in underrepresented groups aren’t unfairly punished or scrutinized for admitting and speaking about mistakes as these groups are already under a microscope and face unique and frustrating challenges. We cannot allow openness and transparency to be used as one more excuse for someone to tell us no, not if science is to diversify and progress.

‘What kind of person and scientist do I want to be?’

Of all the questions I asked myself, deciding to write this post came down to one: What kind of person and scientist do I want to be? As an animal welfare scientist, I have long believed in being transparent and open in science, I realized that’s who I am as a person as well. Living by my ideals meant not only correcting my mistake but also talking openly and frankly about it. These choices, challenging as they may have been, are the right ones. To err is human and luckily for me I have divine friends, mentors, and colleagues that forgive me my mistakes and sins. I believe that we should all be so lucky and that mistakes should be openly and transparently discussed. For now, I live to science another day and look forward to the challenges, mistakes (which I intend to catch prior to publication), and learning that come with it.

For those interested in working with me (imperfections and all) when my current postdoc ends this January, feel free to get in touch via ResearchGate (https://www.researchgate.net/profile/Lauren_Robinson7) or Twitter (https://twitter.com/Laurenmrobin).

Links to published corrections:

http://psycnet.apa.org/buy/2016-39633-001

https://www.sciencedirect.com/science/article/pii/S016815911830193X

Read about Lauren’s fascinating research (with lots of monkey photos!) into animal welfare and animal behaviour here.

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Feminist research, activism, public participation, and social change

Research needs to look towards a future of public participation and institutional disruption, writes Yvonne Kiely, Dublin City University

Research questions often come about in response to an identified problem. Whether this problem is social, scientific, political, micro or macro, researchers attend to the minutest details with their chosen methods in order to affect a change in our understanding of these problems, and ultimately the problems themselves. My own field of feminist media research has, at its core, issues of social justice and disruption; there is a conscious and deliberate aim to readdress inequalities within the media-gender relationship. For many researchers and institutions, the aim is social change.

And change does happen. Since the 1970s – since feminism was realised as a worldwide movement – feminist media research has been disrupting and enriching discussions about the relationship between gender and media in society. The first feminist critique of media was heard in Mexico City at the first of three UN Decades for Women conferences in 1975, and this milestone, where women’s representation by media and within its structures was a central issue, added another critical dimension to the wider feminist movement, and to academia (see Byerly, 2016). The beginnings of feminist media scholarship were rooted within this identification of a problem and the desire to disrupt the status quo for the sake of equality and justice. In doing so, the public, lived experiences of women within media industries became an integral part of how research was directed and articulated in policy and institutional strategy. Today, the field is still evolving and challenging researchers to investigate the structures of our media institutions with fresh critical thinking.

The potential for direct social impact is inherent within feminist research.

The potential for direct social impact is inherent within feminist research. As some scholars have written about the relationship between feminist research and activism, “Many feminist researchers have been influenced by the research questions generated by women’s movements and consider it a moral imperative that their research should include women’s voices. They wish to change both the subjects and the objects of study” (Ackerly & True, 2010).

Among many academic institutions worldwide there is a strong and visible commitment to feminist research, gender studies, and the social good that can be achieved through engaging with communities. However, there is a problem within the protocols and practices of higher level education. The reality which all too often acts as a book end to huge swathes of good, painstakingly uncovered knowledge is one of inertia and stasis. From an insider’s perspective, you can see time and time again, significant pieces of research entering a normalised cycle of publication and citation with the full potential of the research itself locked behind a paywall. Uninterrupted access to the vast majority of this knowledge requires you to be a member of the institutional framework – an academic, or a student – which again comes with its own price tag. The reality of these institutional frameworks is arguably the biggest fault of academia. It is a reality that requires us to think differently about the research journey.

It is a reality that can be readdressed with the understanding that the full potential of socially impactful research resides in the encouragement and inclusion of public action and participation.

My journey from research question to publication brought me face-to-face with the stickiest catch-22 of higher level education. In the summer of 2017 I investigated gender in the music industry. Over these months I interviewed six women who occupy various roles within the music industry in Ireland. Coupled with this was a content analysis of two popular music magazines; Hot Press(Ireland) and Rolling Stone(USA). I tracked over forty years of gender on the covers of these magazines and applied a total of 8,721 individual categorisations to the people in these spaces. The result: gender matters in the music industry, and it matters in very specific ways.

It was the decision to make my research publicly available on my website* earlier this year which revealed to me the voices that academic protocols and paywalls are excluding from the conversation. They are the people to whom the research is most relevant.

The first article I published discussed my initial research question and the journey which led me to the real question that needed to be asked about gender, power and visibility in the music industry. Specifically, in relation to women music producers, the question of ‘why are there so few?’ is imprecise, and the figure of ‘less than five percent’ extensively cited by articles is inaccurate. There is a difference between what we see in the visible, widely established music industry, and what is actually there; the question we need to ask is ‘why do we seeso few?’

The second article detailed the investigation of gender on music magazine covers, and for the first time the shared transatlantic trends of how gender is constructed on the covers of Hot Press and Rolling Stonewere uncovered and articulated.

Combined, these two articles have been read 947 times in almost 60 countries across five continents. Within the space of six months the reach of these articles has exceeded my expectations, and their longevity endures today as they continue to be read. Since the first article was published I’ve received comments and emails from female identifying people in the music industry congratulating me on the research and thanking me for it. Through participatory spaces within online music networks, this research has travelled. Though I cannot say for sure that the people in Albania, Guadeloupe, Mongolia, or Serbia would not have read this research had it gone through academic protocols and been published by peer-reviewed journals, I can certainly speculate as to the difference in reach and accessibility.

One approach that aims to disrupt the traditional boundaries between researcher and subject, and calls for the restructuring of academic frameworks is Participatory Action Research (PAR). Through witnessing the tangible social impact of research sharing in public space, PAR has become critically important to how I conceptualise the research journey.

“Feminist principles of equality, reciprocity, partiality and valuing the voices of ordinary people as expert and authoritative on their own lives are reflected in PAR” (Pain, Kindon & Kesby, 2007).

PAR also asks us to challenge ourselves as researchers.

“PAR introduces new questions about representation, audience and product that compel us to rethink the role and impact of research. More than an epistemological shift, this approach brings commitments to action that push researchers to work in new and sometimes unfamiliar ways” (Cahill & Torre, 2007).

The argument presented by this article is directed squarely at the protocols, politics and paywalls of academic institutions. By all means, we need the peer-review system; research needs to be critiqued and scrutinised by an objective overseer before it is given the zeal of academic approval in a journal. But the cycle of publication and citation behind closed doors needs to be disrupted to allow for public engagement, to allow for the subjects of these socially significant pieces of research to become part of the conversation. For feminist researchers taking inspiration from the questions raised by women’s liberation movements and feminist activism, and for activists who change the language of gender politics and give voice to the changing needs of an equal and just society, there is a mutual interest in the creation of shared participatory spaces, and the disruption of a system which defines access to knowledge as a question of wealth, protocols and institutional status.

*Parts one and two of the ‘Researching gender in music series’ can be accessed here.

 

 

 

References

Ackerly, B. and True, J. (2010). Back to the future: Feminist theory, activism, and doing feminist    research in an age of globalization. Women’s Studies International Forum, 33(5), pp.464-  472.

Byerly, C. M. (2016). Stasis and shifts in feminist media scholarship. In C. Cerqueira; R.    Cabecinhas & S. I. Magalhães (Eds.), Gender in focus: (new) trends in media (pp. 15-27).

Cahill, C. and Torre, M. E. (2007). Beyond the journal article: representations, audience, and the     presentation of Participatory Action Research. In S. Kindon, R. Pain & M. Kesby (Eds),                      Participatory Action Research Approaches and Methods: connecting people, participation    and place (pp. 196-206).

Kindon, S., Pain, R. and Kesby, M. (2007). Participatory Action Research: origins, approaches and            methods. In S. Kindon, R. Pain & M. Kesby (Eds), Participatory Action Research   Approaches and Methods: connecting people, participation and place (pp.9-19)

Exploring Power, Sex and Knowledge in the Feminist Debate on Pornography and Sex Work

Screenshot_20180717-185056_Google

Venus with Drawers, by Salvador Dalí

by Caroline West, Dublin City University.

What counts as knowledge in the sex work debate amongst feminists? Who is permitted to be an expert? Who is heard the most in this discussion? Why does ‘my body, my choice’ apparently not apply to sex work?

These questions occurred to me while studying pornography during my masters in Sexuality Studies. I noticed a trend: the voices being heard in the debate were primarily those of white anti-porn feminists. This is reflected in mainstream media too, where most of the voices heard are the same – with the voices of those actually doing the work marginalised in favour of those campaigning against sex work. Of the voices of those who have direct experience in sex work, the women who report negative experiences appear more than those who report positive experiences. Looking at the feminist debate, we have seen feminist authors such as Sheila Jefferies completely dismiss the lived experiences of sex workers such as Annie Sprinkle and label them as ‘victims’, with the people who listen to them labelled as ‘mistaken’. When we consider that Annie Sprinkle has decades of experience in many different aspects of the sex industry, as well as achieving a PhD in human sexuality, we must consider the ethics of this framing. What are the ethics of framing someone as a victim when they do not feel that term reflects their experiences? Indeed, what are the ethics of insisting someone is a victim, while making a career of campaigning against their chosen employment? And what are the ethics of publicly excluding someone from expert status when discussing their lived experiences? When someone like Annie Sprinkle has such a wealth of experience, why does this experience not count as valid knowledge and why is it subjected to dismissal?

Ethics is further critical when we consider the terminology used in discussing sex work. Some feminists will argue that sex work is not a valid term, and claim it hides the issue of sex trafficking. These feminists will write sex work as ‘sex work’; the use of these sneer quotes deliberately situates the term in a state of ambiguity, outside the realm of acceptable language. However, the term was coined by a sex worker named Carol Leigh who used it to recognise the labour of the worker, rather than a focus on the consumer. The outright dismissal and denial of women to name their work and identity in a way that works for them, is a critical question of power and ethics in the feminist debate over pornography. Through my research with sex workers, I have come to understand it as a form of violence, specifically epistemological violence. This nuanced form of violence is when a person is excluded from the status of expert, and their knowledge dismissed as not ‘true’ knowledge. It is exclusion from ways of knowing.

For all the heated discussion about pornography, there is very little research on the realities of working in the industry. Often, anecdotes are used in place of large scale, ethical, sound research, and anecdotes that tell of negative experiences are promoted in favour of ‘non representative’ positive anecdotes’. Porn studies is a relatively new field of research, and often ideology is substituted for rigorous research. You could almost count on your fingers the numbers of studies that actually talk to women in the industry; studies that talk to men or trans people are even rarer. Yet we see plenty of headlines talking about the ‘realities’ of working in the industry, generally written by outsiders to the industry. In any other field of research, this would be unacceptable and poor research would be instantly dismissed. Perhaps research subjects like porn and sex is too ’icky’ for some, or too extreme, or too close to home.  I have had a number of women come up to me after presentations on my research and tell me that the women who told me they willingly engaged with the industry were wrong, and they didn’t in fact consent. I ask how they know this, about these women they don’t know and will never meet, and the answers are always the same : ‘no woman chooses to do that’. And they will refuse to listen, instead preferring to cling to their beliefs. Or they end the conversation with a curt ‘we will have to agree to disagree’, without listening to what I or my interviewees actually have to say. Other porn researchers have confided the same has happened to them. It’s a fascinating glimpse of the relationship between power, sex and knowledge, and how this relationship can violently exclude and contribute to stigma.

My research involved interviewing women working in the American porn industry, travelling to the AVN awards show in Las Vegas to conduct my interviews. This research project will be one of the few studies that looks at the nuances of stigma experienced by women working in the pornography industry, a sorely neglected area of research. Along the way, I’ve learnt so much about how power operates in this debate, and how exclusion and dismissal of a marginalised group of women is justified by factions of feminists who simultaneously proclaim ‘my body, my choice’ and ask us to believe women’s stories.  A PhD will only address so much, but there is a massive scope for improving scholarly research in this area. A new approach that favours methodologically sound research over ideology is very much needed; one that is inclusive and goes beyond the usual tired binary of looking at sex work as being either exploitative or empowering. This approach will allow the multitude of lived experiences in between these opposites to be discussed in a more holistic and ethical way. But we also need to become more reflexive as researchers, and ask ourselves why we are doing this research; if the research contributes to harm to sex workers through stigma and exclusion, and if the research is accurately reflecting the experiences of the studied population. The violent Othering of research participants is of utmost ethical importance, especially in this field, and one cannot claim to contribute to a nuanced understanding of sex work without being cognisant of these concerns.

Working with the people whose lives you research

Making co-production a reality: ExpertAge

 

peer facilitators

Two of Age NI’s peer facilitators

by Annie Melaugh McAteer and Marian Cinnamond

Background

In recent years there has been a strong emphasis on ‘service user involvement’ and co-production in research. There are many possible benefits: better quality research, innovation and broad dissemination channels to name a few. Having experience of co-production, through working with volunteer peer facilitators, I have experienced these benefits. In addition, the approach has helped me grow as a researcher and changed my approach to identifying questions and interpreting findings through the inclusion of older people in the research.

At Age NI we strive to put older people at the heart of everything we do, and as a result, we feel our approach to research should be no different. Different levels of co-production exist and we have found that involvement of older people, from conceptualisation to dissemination, is key in producing high quality, informed work.

This article outlines a model of co-production that we know works well for us (and of which we are very proud). We use this model to help shape and develop services and policy and it ensures the views of older people are heard. As a researcher I get a lot out of this approach, not least the opportunity to find out what really matters to older people.  Our peer facilitators also get a lot out of this experience,

‘As a peer facilitator I had the privilege of people telling me about experiences that had sometimes been very difficult for them and may have had a negative impact on their confidence and self esteem. I had known some people I interviewed for a long time and others not at all, but I was given insight into their lives which I would not have otherwise have had. This was an enriching and humbling experience for me. (peer facilitator feedback)

 

Older people are experts by experience

We are all getting older. Individually of course, but also as a population.1 And I think we should celebrate this and all doors it opens to new opportunities in later life. An important part of this is that people are given the opportunity to age well and enjoy later life. Older people face a range of barriers which can impact on ageing well including access to quality health and social care, access to information about the help they are entitled to, ageist attitudes and discrimination. It is these areas we most want to understand through our research. More recently we have been working to understand what makes a ‘good life’ for older people and how they understand the term ‘frailty’. Older people are their own experts, with lived experiences of what works and what does not and, as all researchers know, experts are the best place to start.

 

ExpertAge

The older people involved in developing our research are enthusiastic and dedicated volunteers. Their passion and insight helps us ensure our research is accurate and reflective of older people in Northern Ireland.

Co-production takes place through our ExpertAge team; a group of peer facilitators, supported by an Engagement Manager, who support our research in various ways. Those involved receive bespoke training around facilitation and data collection. The model is based on the understanding that people are more comfortable talking to peers than to professionals,

‘Many of us have a tendency to feel less judged or dismissed by people to whom we feel similar, or perhaps be better understood.’ (Feedback from peer facilitation)

Peer facilitators provide feedback on research approaches in terms of understanding and relevance. This helps us ensure we are getting to the core of the issue and doing it in a way that is accessible for older people. They provide insight into developing research within an ethical framework – for example, will asking this question cause distress, and if so, is it necessary or what would mitigate distress? They help us recruit participants, ensuring older people from a range of backgrounds are included, especially those who might belong to lesser heard groups; those who are isolated for example.

One of the most valuable aspects of peer facilitator involvement is their role in data collection. They support older people to complete questionnaires, and carry out one-to-one interviews. These peer to peer conversations allow for a more in-depth exploration of the areas being addressed, and our peer facilitators are able to take the time to spend with people, to do this at their own pace,

‘the interview was quite long, so we stopped for tea and cake in the middle, to give the person a rest’ (peer facilitator feedback)

We know that older people want to be heard, and that being listened to is an essential part of feeling involved and valued. Using co-production and supporting co-researchers, allows us to do this in a meaningful way.

Finally, our peer facilitators support dissemination of results. They provide feedback from their perspective about the data collection, they provide input into preliminary discussions around results and they participate as co-presenters in events to launch findings. Marian, a peer facilitator, co-wrote this post with me.

For me, co-production starts before the project and continues on afterwards. Co-researchers are part of the research team and the project benefits from their inclusion.  As a researcher I should support them, ensure they receive adequate training, brief and debrief them and build relationships. This all takes time, but in seeing the quality of the work delivered, I know it is worth it. And it isn’t just my view; over the last year we have worked with a local council and Public Health Agency using this model. To end, I would encourage others to adopt such an approach and put those impacted by research at its heart.

https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationestimates/articles/overviewoftheukpopulation/july2017

2 For an example of work the peer facilitators have been involved in see here

About Annie, Marian and Age NI:

Annie has a psychology background, graduating from her PhD at Queen’s University, Belfast in 2017. She currently works in the voluntary sector in Northern Ireland as Impact and Evaluation Manager at Age NI. Her research interests are in wellbeing, understanding the needs of older people and service evaluation. She is an advocate of co-production and includes older people in the development of her current work.

Marian Cinnamond: Marian is an Age NI peer facilitator and has been involved in several projects, supporting older people in Northern Ireland to share their views.

Age NI’s vision is a world where everyone can love later life. We provide a range of services to help support older people across Northern Ireland; Advice and Advocacy service provides support and information for older people; Wellbeing Services seek to improve the lives of older people, empowering them to live the lives they want and our Care Services provide care for those who need it. Our policy and influencing activities ensure that policy decisions made today support more older people in Northern Ireland to love later life. We also support sub regional older people’s networks and offer a wide range of volunteer roles. To find out more about Age NI you can see our website: http://www.ageuk.org.uk/northern-ireland

Tackling the ethical approval process

Forms over function: Ethics, ethnography and the NHS

by Carol Robinson

At times last year I forgot that I was doing a PhD. It’s not that I was having a wild time as a student. No, by 9am every day I turned up to the office my department has kindly provided, settled down at my desk and worked solidly until some point after 5pm. Some of that time I’d be keeping on top of email, or attending departmental meetings, but mostly, I was working. Twitter doesn’t distract me, I had an organised weekly list of things to do that I worked through, and things were progressing nicely, thank you.

So why did I forget that I was working towards a PhD? Because for most of that time everything I did was aimed at getting ethical approval for my research. So it was almost a shock to look up and remember that wasn’t really my goal. My goal is to do the PhD research, to contribute to human knowledge and understanding, and to do it in a way that improves people’s lives. For a while however, compiling what became 91 pages of ethics forms plus supporting documents and all the bureaucracy that goes with that completely eclipsed the research.

I always knew I’d need to get ethical approval for my work. What I didn’t appreciate was how time-consuming, frustrating and complicated this would be. I used to listen to other people’s stories of wrestling with UK’s Integrated Research Application System, or with the NHS Health Research Authority’s byzantine processes and think either that they were exaggerating for effect or that perhaps their project wasn’t, well, good enough. I’d had approval from the prison service for England and Wales for two previous research projects; how hard could it be? I now apologise whole-heartedly that these thoughts even crossed my mind.

I did make life harder for myself by wanting to research dying prisoners, thus requiring both health service and prison service approval, as well as that of my University. The prison service process was fairly straightforward and familiar. The real trouble was with the NHS processes, and with the relationship between the three bodies. What kept me going for several weeks, as I tried to untangle the mass of acronyms and synonyms involved, was the thought that I was gaining useful experience. At the end of all this, I thought, I’ll be able to put on my CV that I understand the process, know how to fill in the form and could liaise with a health Research Ethics Committee. Not true. The process is so capricious that all such an entry in my CV would prove is that I once had the mental fortitude to see an application through to its conclusion.

Although my colleagues will tell you I sighed out loud quite a bit, I did make it through the time when an overnight update to the IRAS website hived my answers off into two separate forms, one of which I couldn’t see. I didn’t scream when I discovered just before submission that this should be changed back to one form. I stayed cheerful as my participant information sheet, carefully written to suit people not that keen on reading, expanded to yet another page with all the extra information I was asked to include. I only muttered a modest amount when asked to add the (to the participants) totally meaningless IRAS reference number to it. I maintained my outward equilibrium whilst I confirmed I would not be doing things I’d never thought of (wearing clerical dress was my favourite such request, closely followed by audio-recording outside of interviews). But I confess my heart did sink when someone I was relying on to understand what should happen next said this would be a learning process for them too.

Being a reasonable person, I did appreciate that part of the difficulty was that I was having to fit getting approval for sociological research into a process intended for clinical trials. The mismatch only seems to be partly recognised by the bodies responsible. So, whilst there’s a protocol template to complete aimed at qualitative research, I still had to say I wasn’t using ionising radiation or using human tissue samples. And whilst there are ways to amend the project once it’s been approved, there’s no appreciation that good sociological research is often iterative. Instead, there’s the assumption that you will know all possible scenarios in advance. With this comes an assumed relationship to the research participants; they are to be the subjects, not the co-creators of research knowledge. There is no scope for an understanding of ethical research that deviates from a generic (clinical) ideal, and consequently, the best of a discipline’s specific characteristics and of its newer research methodologies can be lost. I say newer, but in practice even my well established chosen ethnographic methodologies sit uncomfortably with the process of getting ethical approval from a health research authority.

There was a tendency in the guidelines provided to use language in unexpected ways. Have you ever had that experience of all the words making sense individually, but being incomprehensible when put together? I found myself trying to draft emails to effectively ask “so if ‘host organisation’ doesn’t mean ‘the organisation hosting the research’, what does it mean?” I struggled, along with my supervisors, and it turned out, the ethics committee staff, to understand what the REC had wanted when it asked whether I had an ‘honorary contract’. Later on, the REC asked if the scientific validity of the study has been confirmed independently of the academic supervisors, giving as an example of how this might be achieved “a University PhD review process”. None of us, not my academic supervisors, not the university ‘sponsor’ that I’d discovered along the way was also needed, knew what this meant. We were stumped, and resorted to gently approaching a professor elsewhere to see if they could provide such an independent scientific review, and quickly. In the end, this was not needed –all that was meant was would the University’s ethics committee be looking at it. Yes, of course.

There were funny moments too. Having had my application reviewed by a Research Ethics Committee that met in Essex, I then discovered how similarly I pronounce ‘Ethics’ and ‘Essex’, on the phone, to a poor, kindly person trying to understand which ethics committee had looked at it. Eventually, I said, “the one that met in Chelmsford” and we moved on. Having three ethics committees look at your work is not fun. As things are, it’s inevitable for research such as this, but unsurprisingly their expectations are not always compatible. The prison service doesn’t want any contact details for external people, such as academic supervisors, included on Participant Information Sheets; the NHS expects this. The University wants email addresses only; prisoners don’t have email. The NHS REC regarded the notices that prison governors would issue to let prisoners and staff know about the research as ‘posters’ that the REC should scrutinise, so needed the final text agreeing before I could get their approval – 6 months in advance of the governor issuing the text. Prison governors are incredibly busy people, so I am indebted to them for having calmly accepted this.

There is, outwardly, plenty of advice available on NHS websites. Much of it is out of date, hard to find, or impossible to understand. There are flow charts describing a parallel world, ‘start here’ guides buried beyond discovery, and directories that are out of date. Lovely, kind and supportive staff within the NHS R&D offices or working with RECs do their best, but if your project is unusual, there are things they can’t be expected to know, such as that there’s a limited number of Health RECs who will look at prison applications, until it’s nearly too late.

I’m not alone in this. In my struggle to understand the process, I came across numerous articles by academics similarly venting their frustrations, including one that fairly calmly reflecting on the problems, before revealing that their own project had spent the entire initial research budget trying to get permissions for research. Wiser people before me have also found that processes designed for quantitative-based medical interventions and clinical trials cannot adjust to the needs of qualitative research. And yet not much seems to have changed. My gripes may seem small, but behind them is a bigger issue, that of the imbalance of power between researchers and research ethics committees and the lack of accountability of the people, some experts, some lay people, appointed to make such important decisions.

So now I have all the ethical approvals I need, 10 months after I first starting filling in the forms, I’m remembering fondly why I’m here. It comes in flashes; the possibility of time to open that new book I’ve been eyeing up, something on the news that reminds me of the relevance of my research interests, a chance conversation with a colleague. Best of all was a recent conversation with a senior manager at one of the prisons I’ll be visiting for fieldwork. We’d not spoken before, but within minutes she’d reminded me why I’m doing this, why it matters that I’ve survived through all these hurdles. Out there are people who are doing their best in tough circumstances, and good quality research may just be able to help them. I’m looking forward to getting on with it.

Not anonymous enough? Research data and issues of anonymity.

by Carol Robinson, doctoral researcher, University of York.

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Recently, I settled down to enjoy an article by one of my favourite academic writers. It was everything I’d hoped it would be: well written, thought provoking and interesting. It took a new approach to its subject and had a campaigning edge that I sympathised with.  And then, towards the end of it, I realised that I knew one of the people who had participated in the study being reported. Not that I knew them in terms of recognising a type, but that I actually knew them. My first response was one of disappointment. I want my academic heroes to be flawless. My next thought was along the lines of ‘will anyone else know them?’ followed quickly by the question ‘does it matter?’

A quick search on-line resulted in a Wikipedia page that confirmed other people would be able to identify the participant if they wished. The academic had not revealed their interviewee’s age or location, but from the context it was clear that they were referring to a member of a small group and once more specific information was given, anyone with a curious mind and an internet connection could produce a name. From my knowledge of the individual, further details in the article then confirmed what I had found.  Anyone else would be able to identify them, even if they lacked my certainty.

So, does it matter? The article probably won’t be widely read, even in academia, and it’s therefore doubtful that anyone else will do the searching to put a name to this participant. It’s possible the participant wouldn’t mind if they were named, although the author gave no indication that they’d consented to this. The encounter that was described didn’t include anything particularly controversial or personally revealing. If they read it, the person might not like some of the ways they were portrayed but there was no obvious information that could be used against them. But shouldn’t the participant have been assured of anonymity regardless?

Anonymity is one of the things I have to think about in my own research, which is around deaths in prison, two subjects with particular sensitivities. It is one of the hallmarks of ethical conduct, together with confidentiality and informed consent, necessary not least because twentieth century history has too many examples of exploitation and damage occurring in the name of ‘research’. Anonymization arguably has a value in its own right.  Attempting anonymization, even if we secretly admit we may fail, is a way of preserving the idea of academic integrity, of seeking to avoid the exploitation of other people’s generosity that would taint our work. It is evidence of academic vigour. This links back to my initial disappointment that an experienced academic had made a mistake. If the anonymization was ineffectual, were there other aspects of this article that were in some way dubious?

Demonstrating that we have followed the conventions of academic research, whether by correctly referencing our sources or by using recognised methodologies, is part of staking our claim to be academics. It shows a respect for the traditions of our particular discipline, and in the case of techniques such as anonymization, establishes our research as ethically valid. And if ethical validity is lost, it is arguable that other forms of credibility are lost too.

Research ethics committees usually insist on anonymity and confidentiality for people participating in any research, especially vulnerable participants, as a way of protecting them. It is assumed that some harm or loss may befall an individual if their identity is known, if the stories and experiences they share and which become the researcher’s data are in some way linked backed to them as a person living in the real world, beyond the study report or academic article. Sometimes, as in my own research, this is associated with taboo subjects or criminal activity, where there may be very real consequences if anonymity is not maintained.

In seeking ethical approval for research involving prisoners, deemed to be vulnerable because of their incarcerated status, I am encouraged to think through how I will record and store my data in a way that protects their identity. The specific threat is rarely stated. Although it may be poor practice, is failing to anonymise a person really putting them at risk of harm? In many cases, there is perhaps no direct link between a possible failure to anonymise effectively and a harmful consequence for the participant; the information revealed has to have the potential to be used in a way that would confer harm. However, there is often a simple presumption that all people participating in research should be protected, which ignores the question of whether harm is likely to follow from identification.

In all aspects of our lives, most of us share personal information continually.  We willingly offer up personal information all the time, giving our names, addresses and even bank account details to near strangers, trusting without evidence that they will be used for the purpose we intend. We share our views in conversations that can be overhead by others and via on-line discussions with unknown interlocutors. We post pictures on social media, link them to others without their consent, and live surrounded by cameras. Why do we persist in thinking we can anonymise research participants?

Researchers may use pseudonyms, but often a participant’s gender, age, nationality, race or class are pertinent to the research and so cannot be hidden. We can limit access to some findings, but that poses its own ethical dilemmas. And when the research needs to focus on participants from a small group, as in the case of the article I was reading, anonymization becomes so much harder to achieve.

I have experienced this in my own research. Last year, I interviewed uniformed prison staff with experience of working with terminally ill prisoners, in a prison where there were few female officers. The interviews gave really useful insights into the work prison officers perform with dying prisoners but I was painfully aware that the female interviewees may be identifiable by other staff in the prison, despite my best efforts at anonymization, simply because they belonged to such a small group. Even with a wider pool of participants, in a tight-knit world such as a prison anonymization is hard to maintain. Surely we should not abandon useful research because it involves a small group or close-knit communities?

Indeed, should we even try to anonymise our research participants? Most of the time I would say yes, but there are times when far from protecting our participants, doing so actually risks inflicting a harm.  As researchers, we promise anonymity to ethics committee on behalf of other people, who may not wish for it. Very often, participants may have offered to help the researcher because they too care about the issue that is driving the research and want to have an impact on the situation. They may want to have their voices heard, and by extension, themselves credited. When we anonymise them, we keep their voices, but hide their faces. For vulnerable participants in particular, this is potentially a misuse of power. It is a way for the researcher to exert their positional power and claim control. Nicely anonymised, our participants may not even be able to spot themselves in our final reports and presentations. They can’t see how they are represented, and so they can’t hold us to account. There are ways round this, involving them in the production of the final report, but in my discipline at least, few researchers seem to opt for these approaches.

Lastly, I found myself thinking ‘what does one do if one spots that an academic has not sufficiently anonymised their data?’. It is not easy to be certain what responsibility we have when we spot something problematic with someone else’s work. In the case of the article I read, the peer reviewers had been content with the text, the editorial board satisfied and the article is now published. The damage, if there were any, is done and in an age of on-line journal access, probably un-doable.

I asked colleagues, and was struck by two responses in particular, widely divergent but both from science faculties. One, coming from a discipline where the professional accountability of practitioners is paramount, felt strongly that I should contact either the author directly to alert them to the problem, or the journal anonymously to suggest they review their procedures. From another department, a colleague suggested I keep quiet, and not draw attention to the problem or myself. For them, raising the matter with the author would only make things worse. Each response of course reflected the culture and values of the particular academic disciple. In some academic disciplines, where the use of human participants is rare, the question of the quality of participant anonymization may rarely come up. But for many disciplines, including my own, where the involvement of human participants is so often essential to a research project, this is an issue that can occur at any time. Do we as academics have a collective responsibility to revisit anonymization?

 

Emotion Rules in Feminist Book Reviews: An Inroad to Improving Feminist Relationships

By: Lisa Kalayji

WAB 2Swimming through the endless tidal wave of demoralising political think pieces and scholarly jibber-jabber in my mostly academic Twitter feed, I came upon an account called ‘ShitMyReviewersSay’, which features the cruelly scathing comments that anonymous peer reviewers write about the hopefully-to-be-published academic journal articles of their colleagues. The account’s handle? @YourPaperSucks.

Its purpose, other than to give us an opportunity to chuckle at what, under different circumstances, makes us want to either cry or set a university building ablaze, is to highlight the absurd magnitude of the viciousness that peer reviewers will direct at their colleagues when given a chance to do so anonymously.

It’s cathartic to have a laugh at this sort of thing, but when it doesn’t come in the form of a satirical Twitter account, our reaction is a lot different. ‘What the hell?!’ we wonder incredulously. ‘Couldn’t you express your criticism in a less ruthless and petty way? What good does it do you to ruin someone’s day and treat their carefully nurtured brainchild of a paper like garbage?’

ShitMyReviewersSay reminded me of the book reviews in Trouble and Strife, the radical feminist magazine I’m doing my PhD research with.

Trouble and Strife published a fair number of book reviews – feminists write a lot of books! – and over the course of my research I’ve found that there’s a vast deal we can learn about a group of people, be they academics, radical feminists, or any other group, from the way they review each other’s writing.

My research is about emotion culture: the system of rules and social norms that prevail in a society or social group which affect how people feel emotionally and how they express those emotions. Book reviews contain a treasure trove of clues about the emotion culture of the social group that the reviews come from, but in order to see those clues, you need to know some of the things sociologists have learned over the last few decades about how emotions work.

Emotions are relational

As the term ‘relational’ suggests, emotions come up in relationships between people. Because psychology dominates the popular lexicon we use to talk about and make sense of emotions, we tend to think of emotions as states which exist inside of us, are linked to our neurochemistry and our personal histories, and are mostly governed by things like innate human needs for social bonding. All of those things are partially true, but what the sociological study of emotions has revealed is that emotions are actually relational.

Why we feel the way we do in any given situation is constituted by our relationships to the people and things around us and what we understand those things to be and mean.

There isn’t anything in our genetic code that makes us get annoyed when a friend we’re supposed to meet for lunch shows up half an hour late (though our biology is necessary for us to be able to experience feelings), and the feeling of annoyance isn’t something inside of us that emanates outward through the things we say or do (though we do express emotions in that way). We’re annoyed at someone (that’s the relation), and the reason for that annoyance is what we think the lateness signifies. We’re busy people! Don’t they think we have better things to do than sit around waiting? We have to be back at work soon – now we’re going to have to rush through lunch! Our awareness that our friend knows that it’s considered rude to keep someone waiting and that it’s an inconvenience to us is what makes us annoyed – their indifference to our needs and to the agreed conventions of how keeping a lunch date with someone works creates our feeling. Likewise, though, if we found out that they’d been delayed because a stranger attacked them on the street and nearly broke their jaw, our annoyance would quickly give way to concern – what their lateness showed about our relationship to them would have changed, and with it, our feelings about it.

Emotions are subject to rules

Much like there are social rules about how we’re supposed to behave in different sorts of situations, there are also rules about how we’re supposed to feel and how we’re supposed to express feelings. If an adult is audibly crying at, say, a fancy restaurant or a business meeting, that would seem inappropriate, and probably make everyone around them quite uncomfortable. If they were at a funeral, however, that would be considered normal and appropriate, and no one would be bothered.

Even if feelings aren’t expressed, there are rules about how we’re supposed to feel.

If, for example, you’re a bit off your game at work because your sister died last week and you’re in grief, and while not actually admonishing you for it, you get the sense that your boss is annoyed with you for not being your sharpest self right now, you might get upset or angry at them. When someone is in grief, we expect others to respond with compassion, even if that grief peripherally causes some inconvenience to others – it’s a violation of the social norms of compassion and empathy to get annoyed at someone for being grieved, even if the annoyance is mostly hidden and not openly expressed. The rules are also different depending on what the characteristics of the people involved are. If that person crying in the restaurant is an infant, while people might still not be pleased about the noise, it wouldn’t make them feel awkward and uncomfortable, because we consider it normal behaviour for babies to cry regardless of time or place.

These are all some general aspects of how emotions in social life work in ordinary social situations. What my research is about, though, is the specifically political dimension of emotions in social life.

Social norms about emotions are deeply political, even in most seemingly innocuous daily interactions like those I described above. Rules about who is allowed to feel or express what feelings towards whom divides along a lot more political lines than the differences between adults and children. Anger is generally considered more appropriate in men than in women (and in women is more likely to be characterised as histrionics or emotional instability), and vulnerability more appropriate in women than in men (with men’s abilities to be ‘proper’ men called into question if they cry, especially in public). Rules about emotions are also racialised – even very slight expressions of anger from black men are interpreted as very threatening because black men are culturally conceived of as inherently threatening, while much stronger expressions of anger from white men (or women) are regarded as less threatening and are more likely to be considered justified. Our prevailing cultural conceptions about what characteristics different kinds of people innately have give rise to specific, and often strictly socially enforced, rules about who can feel what and how their feelings can be expressed.

Emotions in feminist book reviews

Feminists do a lot of writing, and a lot about how emotions work in feminism can be learned from examining the books, magazines, pamphlets, manifestos, and websites they write. I’m researching radical feminism, a specific type of feminism (there are a lot of them) which emerged during the ‘second wave’ of the Women’s Liberation Movement in the late 1960s, and continues today. From 1983-2002, a radical feminist collective the UK published a magazine called Trouble and Strife, and a lot of radical feminist political thought from that period can be found there.

WAB 1Because feminist politics is so substantially borne out through reading and writing, one of the central strategies that feminists use to think through politics is by reading and debating one another’s writing. For that reason, unsurprisingly, Trouble and Strife published quite a few book reviews, wherein contributing authors to the magazine reviewed books authored by other feminists. By comparing these reviews, and the responses to them that readers communicated to the magazine through letters to the editors, we can see radical feminist emotional politics in action.

What I’ve found is that the emotion rules in radical feminism are different for relationships between radical feminists than they are when dealing with someone outside that political community. When dealing with fellow radical feminists, they’re more considerate of one another’s feelings, express their criticisms more hesitantly and gently, and are more appreciative of the aspects of the work that they agree with. On the rare occasion that someone breaks this rule and is harshly critical of someone within the radical feminist community, there’s a strong backlash, with others writing letters to the magazine to express strong objections to those criticisms having been published, and some questioning the political identity of the magazine as a whole in light of their decision to publish exacting reviews.

This will ring true for many feminists who currently engage in online activism, who are familiar with the more receptive audiences within their own political communities, and harsher (and sometimes outright vitriolic) criticism from feminists who have a fundamentally different set of political values.

This has profound implications for the future of feminism: if feminists who disagree on crucial political issues are more willing to upset one another, and less desirous of understanding where others are coming from, then we’re likely to see a continuation of the entrenched infighting that has plagued feminism for decades. I’m not suggesting here that we should return to the ‘happy sisterhood’ of yesteryear (which, as many feminists have pointed out, never actually existed). What I do want to highlight, though, is that if we want to understand why conflicts between feminists get so heated and can be so divisive, understanding the emotion rules which give shape to feminists’ relationships with each other is a crucial piece of the puzzle.

Once we become more aware of these rules and how our own feelings are shaped by them, we can act to change them, and while this won’t solve all of feminism’s problems, it can go a long way toward generating more fruitful dialogues between feminists who belong to different political communities.

This strategy can be extended to other social movements as well, and it has rarely been a matter of more urgency than it is right now for social movements to be able to prevent the breakdown of their political projects due to irreconcilable conflicts from within their communities. During the currently ongoing period of rapid and disorientating social and political change, understanding the emotion rules of social movements can help us to ensure that efforts to enact positive social change are successful, and examining the way we speak to, speak of, and write about one another is one tool we can use for making sense of our emotion cultures.

You can find all issues of Trouble and Strife on their website at troubleandstrife.org.

Researching through Recovery: Embarking on a PhD post-brain surgery

By Sinead Matson, B.A., H.Dip. Montessori, M.Ed.

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Anyone who has had the misfortune to undergo a craniotomy should do a PhD. Seriously. It makes sense. Both paths have similar hurdles: Imposter syndrome – check! Struggle with writing – check! Trouble expressing your thoughts – check! Extreme tiredness – check, check! It’s physiotherapy, but for your brain.

I joke of course, because each person’s individual recovery is different, but doing a PhD has personally given me the space to recover from a craniotomy while still actively working on my career and passion. I was always going to embark on a doctoral degree but in October 2014 (ten weeks after my second child was born) I had four successive tonic-clonic seizures which ultimately led to the discovery and removal of a large meningioma (brain tumour) four days later. When I woke up from surgery I couldn’t move the right-hand side of my body except for raising my arm slightly; my speech and thought process was affected too. Of course, I panicked, but the physiotherapist was on hand to tell me that while the brain had forgotten how to talk to the muscle – the muscle never forgets. I instantly relaxed, “muscle memory! I’ve got this” I thought to myself – forever the Montessori teacher.

Nobody tells you that recovering from brain surgery is exhausting, so exhausting. Every day I had to relearn things I had previously known. Every single sense is heightened and a ten-minute walk around the supermarket is a sensory overload. However, I never questioned the fact that I would start college the following September; in fact, it drove me to do my physio and get physically better. I even applied for a competitive scholarship and won it. I can never explain enough how much of a boost that was to my self-esteem. There is nothing like brain surgery to make you question your identity and your cognitive skills in a profession that values thinking, research, articulating new ideas, and writing. It is like an attack on your very being.

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When I started, I could not have been more accommodated by the Education department in Maynooth University, but in a manner which was subtle and encouraging whilst still pushing me to do a little bit more. My supervisor struck a delicate balance between supportive and always encouraging me to look a little further and read more. I never felt mollycoddled or out of my depth (well… no more than the average PhD student).

Of course, there are challenges. Aren’t there always? It can be frustrating (not to mention embarrassing) when you cannot process a conversation as quickly as it is happening at meetings, conferences, or seminars; it’s the same for when you answer a question but know the words you are saying are not matching what you are trying to articulate. Submitting a piece of writing to anyone, anywhere, is the most vulnerable thing that you can experience, especially when your language centre has been affected and you know your grammar and phrasing might not always be up to par. Transitions flummox me, particularly verbal transitions like the start of a presentation, introducing and thanking a guest speaker, taking on the position of chairing a symposium, and day to day greetings. I lose all words, forget etiquette, and generally stammer. I forever find myself answering questions or reliving scenarios from the day in the shower!

So, what’s different between mine and any other doctoral student’s experience you ask? Well, I’m not sure. I see my fellow students all have the same worries and vulnerabilities. We all have discussed our feelings of imposter syndrome at various points thus far, our excitement and disbelief when our work is accepted for presentation or publication, and our utter distress at not being able to articulate what we really wanted to say in front of a visiting professor. I do know this: it used to be easier; I used to do it better; I never had problems with writing or verbal transitions before; it is harder for me now. But (BUT) I now have a whole team of people who share my feelings and frustrations. I now have a community who champion my successes and comfort me with their own tales when I have bad days. I now feel less isolated and more normal. They allow me…no…they push me to do more, to believe I could travel to India alone to research; to not let epilepsy or fear to hold me back; to believe that I could negotiate the research process on the ground with preschool children and their parents and not get overwhelmed. They have read papers and assignments for me before I submit them and they expect the same of me. They simultaneously allow me room to vent (and take the lift when I’m too tired to walk) and they push me to be more adventurous with my reading and theory – to take risks I may never have taken.

All-in-all, I cannot think of a better way to recover from brain surgery and all it entails than the absolute privilege of completing a PhD. It gives me a space – a safe space – to recover in. The research process itself has helped me learn who I am again, what I stand for, and what I believe. It has pushed me so far outside of my comfort zone in a way that I’m not sure I would have done otherwise but I am positive is vital to my full recovery. It has exercised my own personal cognitive abilities, reasoning skills, verbal and written expression so much more than any therapy could have, and it has given me, not a cheerleading team, but a community of researchers who are on the same journey – in a way.

I’m not saying it’s for everyone – no two recoveries are the same. However, I wish there was (and I did search for) someone who could have told me before the surgery, but particularly while I was in recovery, that life doesn’t have to stop. That it is not only possible to research while in recovery from brain surgery, but that it can also have a transformative effect on your life and your sense of identity; that it will push you outside of every comfort zone you’ve ever had, and it will be exhilarating.

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The view from here: fighting disillusionment as an American expatriate

by Cindy Withjack

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You spend all your time talking, not working. You are an expatriate, see? You hang around cafés. –Ernest Hemingway, The Sun Also Rises

 

I was wearing an Esmeralda crewneck sweatshirt the first time I heard someone say the President should be ashamed of himself. I was either reading or spinning around in circles, and I liked Esmeralda best because she looked most like me. There were at least three adults, perched like gargoyles on the couch edge and they, along with a sizeable portion of America, were all at once captivated and scandalized; the 42nd President of the United States had brought shame upon all our kettle black homes. I had yet to understand the difference between peaches and impeachment, and in twenty years time I would be an expatriate.

I was an expat before America changed hands, before Bernie Sanders was officially out of the running, before Hillary Clinton was deemed a ‘nasty woman.’ America felt to me considerably far away during my Master’s program in England where I was writing a short story collection and finalizing PhD applications, still trying to decide if it was weird to put milk in my tea. In the postgraduate pub or university café, I was often asked how I was allowing this to happen—‘this’ being the rise of Donald Trump—and I responded, with my significantly less charming accent, that I held much less clout than they assumed. And yet, it was unnerving how guilty I felt, how relieved, to be so far away from America. I busied myself with PhD applications asking that I demonstrate my intentions: my plan to contribute something new and significant to academia and why. This portion of the applications felt timely; in my case wanting to contribute something significant meant being present, from afar, in the matters of America. While the critical and creative aspects of my proposed novel materialized, I returned again and again to that awareness of guilty-relief, which did not add to my work as much as it hindered it.

During my Master’s program, in spite of American news and Brexit, I produced a sizeable portfolio of more than twenty short stories. This output created in my mind, alongside minor paranoia, an almost mystical idea of how my novel would come together. Compared to the struggles I had faced in my life to date, I felt confident in my ability to go into any PhD program with squared shoulders. There was, I believed, a surge in Intersectional Feminism, morality, and accountability. In my belief that I would change the world, I assumed the world was changing with me. Not so quietly, there was a disconnect forming, a disillusionment that would burrow its way into my studies and my writing.

I watched Donald Trump become elected the 45th President of The United States on five screens. Receiving the news this way, five different times, each one on a slight delay with varying accents and facial expressions, was both remarkable and necessary; my brain wanted to understand absolutely, without cushion or crutch, despite the disappointment that followed. America, the grassy place my immigrant parents felt was best, had let down so many of us in just a few hours. As a devoted academic I wanted precise control over the way my brain absorbed and processed the information, which meant having an early morning Q&A with myself: How did we get here? (We were always here.) Who let this happen? (We did.) What happens next? (Go to sleep.) Still, the idea of this particular President dictating what happened next with my freedom, my body, and my future was unfathomable.

My Master’s program had recently ended; I decided on a PhD program, but it was still several months away. I was appreciative that I had nowhere to be, no deadline, no expectations. I allowed myself time to wallow, stayed inside for 24 hours after the election, wondering how long I could go without disclosing my nationality as to avoid being forced into discussing what had just occurred, finally leaving to pick up a pizza. Mumbling as few words as possible while paying, I gave myself away.

            ‘Where are you from?’ asked a man to my right.

            ‘Is it that noticeable?’ I stalled.

            ‘You’re definitely American.’

            I sighed feeling both embarrassed and defensive.

            ‘What a huge mistake,’ he said. ‘How could you let that happen?’

Here I considered laughing, but truthfully I cannot remember how I actually responded. I was sleep deprived and hungry, and in hindsight, I can only imagine all the best possible retorts forming one giant metaphorical middle finger.

What followed were several months of cyclical social media overload followed by social media blackout, before I returned my attention to books, having distractedly cast them aside and, for the first time in my life, I found no comfort there. The abundance of news easily became overwhelming despite my feeling that remaining informed was a requirement. Wouldn’t it be negligent and irresponsible to distance myself from the news, both good and bad, and to potentially find myself ignorant about the state of the world? The anxiety of activism—attempting to quell my resentment by becoming more involved, and sharing important articles, and signing petitions felt at times like two steps forward followed by one very long backslide—left me exhausted and unfocused. Fighting disillusionment proved difficult following Donald Trump’s first week in office, and I went into day one of my PhD program feeling completely derailed.

Roughly two months into Donald Trump’s presidency, and a rough two months it has been indeed, I still feel derailed, but I am listening to Purple Rain on repeat. I am writing less but reading more, and since my Master’s graduation I have been skeptical of the idea that I can contribute something of real significance during such a tumultuous time; those twenty short stories seem so very long ago. It is in our nature, people like to generalize about writers, to be self-deprecating and melodramatic, and I totally agree. Writing as a profession is hard all on its own; add to that a complete upheaval of the things a writer holds dear—freedom of speech, reproductive rights, racial justice, issues of immigration, LGBTQ rights—and things get a bit more complicated. However, ‘[t]his is precisely the time when artists go to work,’ Toni Morrison’s words try to remind me. ‘There is no time for despair, no place for self-pity, no need for silence, no room for fear. We speak, we write, we do language. That is how civilizations heal.’ The year is only just beginning, so there is still time for me to latch onto Morrison’s words and follow through. I have no immediate plans to return to America, and as my program is the same length as one presidential term, I have at least four years to read, spin around in circles, and write a novel. It only took a year for me to genuinely enjoy black tea. A lot can happen in four years.

 

Improving future asthma care

L0040548 Flyer and advert for "Potter's Asthma Cure"

5.4 million people in the UK have asthma, and every ten seconds, someone in the UK has a potentially life-threatening asthma attack. On average, three people a day die from an asthma attack in the UK – in 2014 (the most recent data available), 1216 people died from asthma. Many of these deaths are preventable, and continued use of asthma medication is an important factor in this (Asthma UK, 2017). But many people don’t stick to their asthma medication routines. Kathy Hetherington writes about her research into a new method of asthma treatment which is significantly reducing the risks associated with severe asthma.

My PhD investigates patient’s response to inhaled steroids using novel monitoring technology. I have spent the past year coordinating this project throughout the UK, within the Refractory Asthma Stratification Programme-UK, (RASP-UK). I work alongside Professor Liam Heaney and Professor Judy Bradley in Queen’s University, and Professor Richard Costello in the Royal College of Surgeons Ireland. As a young researcher in Northern Ireland I am excited in the knowledge that my PhD has the potential to improve future asthma care.

The Problem

Many asthmatics do not use their inhalers correctly. As a result, they don’t receive their prescribed dosage of inhaled steroid. Within Queen’s University Belfast and the Belfast City Hospital, we have developed and implemented a new method of observing and monitoring how patients use their inhalers. This revelation is significantly reducing the risks associated with severe asthma.

In RASP-UK severe asthma centres we record Fractional exhaled Nitric Oxide (FeNO), which is a measure of lung inflammation. An elevated FeNO is a predictor of worsening asthma symptoms or even an asthma attack. Those who continue to have an elevated FeNO are usually considered high-risk patients who need daily oral steroids alongside their inhalers. This elevated FeNO could be due to steroid resistance, or not continuing to use their inhaler (this is known as non-adherence). Determining inhaled steroid response in a difficult asthma population is a major problem in a clinical setting.

The Intervention

Within RASP-UK, we have established and further validated a clinical test using daily FeNO measurements (using a Niox Vero machine – Figure 2) alongside some additional inhaled steroid. The remote monitoring technology we use alongside this test is called an INCA™ (INhaled Compliance Aid) device. The INCA™ (Figure 1) was developed by Professor Richard Costello in conjunction with Vitalograph and is designed to work with the diskus inhaler. The INCA™ device records a time and date when the microphone inside it is activated, and records a sound file of the inhaler being used; these sound files can then be transferred to a computer. The sound files are then uploaded onto a server via a data compression utility programme where it is analysed by an automated and validated sound analysis algorithm. This combination allows us to create a remote assessment of inhaled steroid response and thus identify non-adherence to inhalers. We then communicate this information to the patients to try and improve their adherence to their inhaled treatment.

With further development, we created a web-based interface (Figure 3) to deploy FeNO suppression testing across the UK though our established RASP-UK Severe Asthma Centres. Here, we examined the utility of FeNO suppression testing to predict inhaled steroid responsiveness after a further 30 days on a normal inhaler. This period of prolonged monitoring provides further feedback on patient inhaler use and technique, using the unique presentation method below, enabling us to identify facilitators and barriers which may be involved in optimising inhaler adherence. We are constantly increasing the precision and user-friendliness of this hardware and software so that the data is easily interpreted and demonstrated to the patient.

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Figure 3 Data from the Vitalograph server following upload of one week FeNO suppression data and INCA™. The Vitalograph server shows activation and usage of both FeNO machine and INCA™ device (A) and depicts the FeNO data as precentage change from baseline as originally described (y1-aixs figure A).  The INCA™ device time and date stamps the number of inhaler uses (y2-axis – Figure A) and this is shown alongside technique analysis (B). Possible technique errors which can be identified and reported are shown in Graphic 3.

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The Future

Though we are only a year into our project, 250 patients in severe asthma centres throughout the UK have carried out FeNO suppression testing. Many have gone on to improve their inhaler usage and asthma control and decrease the inflammation in their lungs. We have presented our UK multi-centre data at conferences all over the world and interest in our project is increasing. In the past 6 months I have had the privilege of being a key note speaker at Severe Asthma Masterclasses and Specialist Asthma Meetings. This summer I have been invited as a symposium speaker at the European Academy of Allergy & Clinical Immunology in Helsinki, Finland which will undoubtedly be the highlight of my career to date!

My PhD has given me the opportunity to be able to work with a wide range of fantastic professors, clinicians, patients and co-ordinators. This PhD has convinced me that we can use this unique test and methods of presentation to improve asthma care throughout the world. I can’t express how much this thought excites and drives me; it is with great humility and privilege that I will continue to contribute to this extraordinary field.