The COVID-19 pandemic is requiring home-testing in large numbers, and this process raises questions about the ethics of informed consent. In our latest blog, DEPTH member Dr Catherine McGowan reflects on a route to informed consent and suggests how governments, healthcare groups and institutions can maintain informed consent in a time of crisis.
A key step in any research project involving human participants is gaining informed consent. COVID-19 has disrupted research work around the world, and it will continue to do so for many more months. In this ever-changing pandemic environment, important research must continue. However, this work still requires researchers to think carefully about how best to obtain consent remotely.
Researchers carrying out various population surveys are sending COVID-19 tests by post and encouraging people to self-test. Self-testing kits are a good example of a process that reminds us of the need to think about consent. Research participants must provide informed consent to participate in research, particularly when it comes to population surveys involving biological sample collection. Information governance in the European Union and the UK has changed considerably with the implementation of the General Data Protection Regulation (GDPR), which does not allow for presumed consent in most cases – so when it comes to a process like home testing, for example, the data gathered cannot legally be collected or processed without gaining explicit consent from research participants.
In 2017 we carried out antibody testing amongst non-Ebola infected healthcare workers (HCWs) who had returned from West Africa following the 2014/16 Ebola outbreak. We posted test kits to HCWs throughout the UK and the Republic of Ireland, with samples returned via post. When it came to getting informed consent, face to face consent was not feasible, we could not waive consent and nor did we feel comfortable presuming consent. In the interests of best practice we also wanted to make sure that participants had all of the information they needed in order to consent fully – and be able to reach us, the project PIs, with any questions they might have. Ultimately, we decided to recruit participants via email but first they were asked to work their way through the consent materials electronically, and to explicitly indicate their consent. Once participants had consented they were asked to complete a short questionnaire and to provide their postal address so that we could send out the test kits. At the conclusion of the study we emailed participants to let them know the results of their antibody test and included a link to a survey asking about their experience of consent. Our findings, as well as a description of the design of the consent process is described in our paper which you can read for free in Journal of Public Ethics. We asked participants how much of the consent material they read, how informed they felt and if they preferred online to traditional face-to-face consent.
The results were very interesting: Participants indicated a high level of engagement with the consent materials, with 67% reporting having read all and a further 20% having read ‘most’ of the materials. All participants indicated feeling completely (78%) or mostly (22%) informed about the purpose, methods and intended uses of the research, as well as what participation was required and what risks were involved. Overall, participants reported an overwhelming preference for online consent. Their longer free-text responses suggested that they were predominantly attracted to the convenience of online consent, including the leisure to read the consent materials several times, and the ability to engage in the consent process at a convenient time/place. Free text responses also supported online consent for our survey, but participants indicated that were the study more complex or were it a clinical trial they would prefer to have a face-to-face element.
Obtaining consent in lockdown
What can this study tell us about the research based on COVID-19 home-testing that is happening now? Well, it is our hope that as researchers aim to continue their work online, they give careful thought to what informed consent is in the current circumstances. Our paper describes how to obtain informed consent electronically and in a way that we have found to be acceptable amongst our research participants, but this might not be appropriate in all cases.
We also hope that Public Health England puts in place a robust framework for the pandemic to ensure adequate consent is still sought and obtained for any research. It is in times of crisis that abuses may be allowed to happen. Even with the best intentions, researchers may act expediently and may overlook best practice in their hurry to conduct the research and obtain results. In disaster settings, corner-cutting in ethical research practices are more likely, but this is also when participants are most vulnerable and may feel less able to challenge research practices that feel inappropriate. Our own study has shown that there are easy and acceptable solutions for obtaining informed consent. We hope that researchers currently developing population surveys using self-testing methods will give some thought to developing acceptable solutions to obtaining informed consent. We must continue research activities without forgetting our professional, ethical, and legal obligations to those who make our work possible.
Our latest blog by DEPTH researcher Dr Sam Milestakes a break from coronavirus research to explore the themes of co-production and collaboration in our recently completed projectThis Sickle Cell Life. Read on to find out more…
Regular readers of this blog will know that our work in DEPTH (Dialogue, Evidence, Participation & Translation for Health) includes thinking about how we involve different communities in health research. Today I’m writing about This Sickle Cell Life, a recently completed qualitative research project that talks to young people about their lives and experiences of having sickle cell disease. I should add that some of what I’m writing about is based on team discussions and reflections. We’re writing this up in more detail with our co-authors and I’ll keep you posted on how it progresses.
I got involved in This Sickle Cell Life with Professor Cicely Marston and Dr Alicia Renedo when I started here at LSHTM in 2017. Funded by the National Institute for Health Research (NIHR), the project explores how young people experience transitions in moving from paediatric to adult healthcare services. This includes for example how our participants experience GP surgeries, scheduled hospital visits or unscheduled (i.e. emergency) trips to A&E. We also explored the personal and day-to-day experiences of young people living with sickle cell disease. We were aiming to answer questions including: What is the relationship between a young person with sickle cell and their doctor, and how does this change if you move away from home for college, university or work? And why do young people with sickle cell sometimes delay going to the emergency department when they have a sickle cell pain crisis? (Read this excellent overview by Sickle Cell Society for more on pain). We then cast the net wider to think about family, school, sex and relationships.
Our aim was to offer a much-needed sociological picture of how a young person with sickle cell navigates their life and their future, to mirror the more extensive clinical and quantitative research that has been published about the condition. That’s not to say that sickle cell research is exactly a crowded market – Professor Simon Dyson, who has made brilliant sociological contributions over many years, has rightly noted the lack of sickle cell research compared to other chronic health conditions, and how social, economic and ethnic determinants play into this marginalisation:
‘…impairment is primarily socially created by environmental factors, consumption patterns and accidents and not by genetic disorders.’ (Dyson 1998: p.123).
Fieldwork was already expertly wrapped up by Alicia when I joined the project, but I got to be part of the really interesting results analysis, discussion and dissemination work, including an engagement event with the public which in turn led to some fantastic community projects of its own. You can read more about the work here, but what I’m going to focus on in this blog was the role of ‘co-production’ in the project: put simply, that means working with different ‘kinds’ of people to produce research that is a collaborative effort. Co-produced research recognises that expertise is held by a range of people rather than only the ‘usual suspects’ (in this scenario, academics or clinicians). Advocates of co-production hope that the research findings developed are more rounded-out and take into account the ‘embodied’ knowledge of people who are living the journey themselves (see Renedo et al., 2018 for more).
One of the distinctive features of This Sickle Cell Life was that it was co-produced with two young sickle cell patient experts and a sickle cell parent/carer expert from the outset. All three have extensive knowledge of sickle cell and life with sickle cell, and already advocate for healthcare improvement in their own lives. They were involved long before I was – right from the project planning and application stage before funding was granted, in fact. They were also paid for their time. Partnering with these three experts added a very important facet to the research we conducted. There is a lot of talk in public health research about ‘PPI’, or patient & public involvement with healthcare. In the NHS, the motto ‘nothing about me, without me’ represents one way in which patient involvement is rationalised. Funders and grant-giving bodies are (rightly) keen to see meaningful involvement with the communities (sometimes also called beneficiaries) who are most relevant to the research being done. Co-production can also shine a light on the power imbalances that often happen in a traditional researcher-participant relationship in social sciences research which can reinforce all sorts of unhelpful hierarchies and prejudices.
In our project, we agreed with our patient experts that it was particularly important that their voices were heard, because they contributed expert knowledge of their bodies and their own health conditions, as well as helping us at the findings stage of the research, highlighting themes that were most pertinent to improving healthcare environments for people with sickle cell. We further argued at every stage (to colleagues, institutions, sceptics – anyone who would listen basically) that our involvement processes needed to be considered, balanced, and properly thought-through – lip-service involvement doesn’t help any party and it is not in the spirit of meaningful participation. We wanted to amplify less-heard voices and hear stories from our patient experts and carer experts because their analysis of their own, and others’, experiences of sickle were invaluable. Our collaborators’ input contributed a different side to more traditional qualitative research; as a team, we worked to interpret the data and draw out the implications for practice.
The highlight of the project for me was not just the valuable findings that came out of 80 interviews with young people, which are research outputs of their own brilliantly managed by Alicia (which you can read for free here), but the process of co-producing research with patient experts and carers. I have discussed the idea of co-production a bit in my own digital technology and sexuality research, in which I (loosely) explored the co-production by both researcher and participant of a safe discursive space for covering sensitive topics in sex and sexuality in fieldwork research (which you can read for free here). But This Sickle Cell Life made co-production central from the start and throughout the full four years of the project; it is clear to me only now how truly different this way of working is, and the value it adds.
The winding road to publication: How expertise is framed in academia
What was interesting was how our co-produced research outputs were received by peer reviewers for academic journals. Having learnt so much from our patient experts about how their experiences reflected what our results showed us about participants’ experiences, we invited them to write an academic article with us. We did this by discussing study findings with them and inviting them to discuss these themes with us as I took notes and recordings to write into a larger discussion. It was a long process, involving lots of conversations in cafes, on the phone and by email to coordinate our different experiences and expertise.
However, upon submission several reviewers critiqued what they felt to be overly personal accounts of sickle cell. Even having noted our co-produced efforts and celebrated this ethos, reviewers still picked out patient expert passages that they felt were lacking objective research – questioning the expertise of our co-production partners who were best placed to be reflecting on the study findings. Where our patient experts told us how their experiences chimed with those of the participants when it came to hospital care or chronic ill health or family issues, and I wove these reflections into our discussion section, reviewers felt this expertise was anecdotal or somehow unscientific – as if the rest of the qualitative dataset was by contrast unobjectionable or markedly positivist, when of course it wasn’t. We were in the paradoxical position of amplifying the expert knowledge of people with sickle cell and yet that knowledge being somehow too ‘real-life’.
We were in the paradoxical position of amplifying the expert knowledge of people with sickle cell and yet that knowledge was somehow too ‘real-life’.
I have sympathy for the reviewers, too, because despite the best will of a whole range of actors to more actively incorporate a range of knowledges into academic publications, establishment traditions prevail. This clashes with what I guess I would call the out-of-place-ness of equitable authorship, which synthesises a range of voices, including those which are non-establishment and may contribute in different (often refreshingly different) ways than are standard. None of this is to say that it wasn’t a valuable experience, but it was a long one. Critical Public Health and its editors did support our approach, with suggestions back and forth, and published what we hope will be the first of several co-produced articles (read it for free here).
That leads us to one of the curious tensions in this kind of work – our collaborators are clearly experts, but they’re not academics. Does that matter? Well, it shouldn’t – especially given the UK NHS drive to centre patients and public at the forefront of research and healthcare involvement. And yet the process of publishing papers with our patient experts was not straightforward. It required different ways of working than what we were all used to, and different approaches – and that’s before we consider the lengthy journey we then had publishing our co-produced academic article, where roadblocks re-emerged.
I came to see that the key contribution of any author is their contribution to ‘the work’, and this can go far beyond typing up results or making an argument for changing UK healthcare practices in an academic article. Instead, it is about having conversations – in ways that ensure equity between all parties – and then using academics’ toolkits to package this co-produced knowledge whilst maintaining its integrity. For us, a more liberatory outcome would have been yet more unconventional than the finished piece. Maybe this would have taken us further from what makes an academic article an academic article. Well, you might argue, if you really want to publish more collaboratively, perhaps a different format would be better suited – a commentary, or an editorial, or a blog – and we are in the process of doing all those things. But this argument overlooks the ostensible openness of academic publishing to co-produced and public involvement endeavours. We’re all supposed to be embracing that ethos…aren’t we? There is work to do, it seems, in lining up expectations with conventions in co-produced research outputs.
As for the research itself, it’s been a fantastically valuable project for better understanding the health and social conditions of sickle cell. There are definitely ways we can further improve on our approaches to co-production for next time. It’s also not to say that our co-production work was straightforward or easy. On the contrary, it required constant communication between all parties to stay on the same page. But that ongoing relationship, and that time taken to gather views from around the table really ought to be how we always operate: with care, consideration and dialogue between all parties at all times. We came to define it as ‘slow co-production’, which I’ve blogged about before (we lay out what we think are its strengths in thisarticle). It is only within the tight parameters of contemporary academic research contracts that this valuable, lengthy process feels like a luxury. I should add that the NIHR were very supportive of our approach and helped us build into our budget money to support exactly this kind of process, and they also gave us a generous timeframe in which to generate all this co-produced work.
It also encourages us to question what constitutes ‘knowledge’, who or what entities ‘hold’ knowledge (and you see it performed nowhere more starkly than in healthcare settings), and of the power imbalance between researcher and participant. Now I think twice before internalising the status quo of privilege and position in knowledge-holding (and knowledge exchange). I think more about how practical experience informs knowledge – or is overlooked by systems of knowledge and knowing – and who actually gets a seat at the table in supposedly collaborative endeavours. Cicely and Alicia have written about all of this and more, and you can read this work here,hereandhere.
Pursuing co-production helps us recognise the importance of prioritising equitable social science research that values all voices equally and recognises a range of expertise, rather than relying on the (often colonial, socially-structured, privileged) expertise bestowed – and often still prioritised – by academia.
This Sickle Cell Life was funded by the National Institute for Health Research Health Services and Delivery Research Programme (project number 13/54/25). The views and opinions expressed therein are those of the author and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS or the Department of Health.
Recent social media debates have shown that misunderstandings about ‘biological sex’ are common. In our latest blog, DEPTH Director Professor Cicely Marston discusses how simplistic ideas now circulating about biological sex miss the mark – and why it matters.
Isn’t it the case that biological sex can only be binary – that you can only be biologically male or biologically female? And why does it matter anyway? In this blog I’ll discuss why biological sex is more complicated than many people think.
A popular way to explain the concept of ‘gender’ is to say that ‘sex is biological and gender is social’. This can help get the idea across that gender is ‘social’ – that is to say, it is something created by people, involving things like expectations, behaviours, and beliefs about masculinity and femininity. It’s true that gender is indeed social, but this leaves the idea that ‘sex is biological’ unexamined – and in some aspects in fact, ‘biological’ sex is social too.
But how can ‘biological sex’ possibly be in any way social? The basic thing to understand is that categories and labels – even words themselves – are social. For instance, if I call something a table you will know roughly what I mean. The table is real, material, and can vary: for example being made of different materials, in different sizes, and so on. We agree as speakers of the language roughly what we mean by “table”.
All the word “table” reflects is what we have decided, collectively over time, counts as a table. E.g. a table generally has legs, but not always the same number. It might be raised high off the floor, or be low. Through usage, all that diversity comes to be labelled with the same word “table”.
When differentiating tables becomes socially important, language adapts, and the word “table” might be qualified (“occasional table” or “coffee table”).
In the same way, “biological sex” is what we conceptualise, as a society, as “biological sex”. It is a label used to describe a collection of indicators, biologies, and anatomies. Indicators (e.g. chromosomes, gametes), that have changed over time and with scientific discoveries. It’s not a failsafe way to know what a particular individual’s biology is in every case.
This is why we can say that the biological sex binary is socially constructed– biological sex as male or female is a shorthand for categorisations of the material world that we find useful.
To take the most obvious example, many people see a “biological” binary in genital shape, yet this is an imperfect heuristic. (Content warning: genital cutting mentioned below). In many places, babies are assigned to the category “male” or “female” based on the shape of their genitals at birth. However, individuals may have a genotype that appears to “contradict” their assigned sex, or that in other ways doesn’t match the simplified XX vs XY that we learn at school. Unsurprisingly, people who assert that biological sex is binary seem to offer varying and sometimes contradictory biological markers that they claim divide everyone in the world neatly into two categories. Is it chromosomes? Gametes? Testosterone levels? Genital appearance? Nobody seems to be sure.
“Biological sex” is a construct that helps our highly gendered society to categorise and label others.
“Biological sex” is a construct that helps our highly gendered society to categorise and label others. But why bother? The sex binary has major social significance (so much so that children with genitals less easy to read as male/female may be subject to genital cutting), and people who do not present in line with the sex they were assigned at birth, or who are not read as clearly “male” or “female”, continue to experience social disapproval, discrimination, and violence.
The idea of “naturalness” or the intrinsic/immutable binary nature of “biological sex” is important socially too. If the binary is “natural” or “biology” there’s nothing we can do about it, and departures from the typical become “disorders” rather than simply variation. Similar ideas also underpin arguments that differences (and inequalities) between men and women are biologically determined and so cannot be overcome.
The biological sex binary oversimplification does particular harm when it is weaponized to vilify or discriminate against individuals or groups who are deemed not to fit such as people not easily read as “female” or “male”, and when backwards logic is used to try to gloss over discrimination and vilification by representing it as simply a consequence of the “natural” order of things.
To summarise, “biological sex” involves not only the material but also the social. The crucial point is that the idea of a strict and immutable binary is socially constructed. The concept of “biological sex” is not inevitable because we have bodies, it is a response to how we see those bodies and how, as a society, we want to divide them up into categories. So the whole argument about gender and sex binaries is not an argument about science – however much people want to present it as one – it is an argument about classification and how we as a society choose to label people. Biological sex is social as well as material: and that matters.
What do you think? Thoughts, questions – and answers – are, as ever, welcomed in the comments section below this blog. (NB: If you’re reading this article on the DEPTH blog mainpage, click on the title of this post and comments will open at the bottom).
The short course consisted of two full day workshops (day 1 Professor Pranee Liamputtong and day 2 Dr Alicia Renedo), which included a combination of mini-lectures, reflective discussions and participatory group work by students from Kyoto University. Research degree students from LSHTM also attended the course at Kyoto and presented some of their own participatory research projects
Professor Liamputtong from Western Sydney University delivered an engaging session on the theory and methods of PAR (participatory action research). PAR emphasises involvement of participants in the research undertaken and encourages participants to shape the research undertaken. The day started with an inspiring introduction into the philosophy behind PAR, which drew upon the pioneering ideas of Brazilian educator Paulo Freire. Students learned about the importance that Freire’s work has had on the theory and practice of participation for social change and health improvement. In particular, Professor Liamputtong challenged students to think about how Freire’s concepts of ‘radical love’ and ‘conscientization’ can contribute to more equitable research. This is a type of research that challenges the status quo by engaging ignored and silenced voices and addresses the problems marginalised communities identify as central to their everyday life.
Professor Liamputtong contextualised PAR within the wider debate about decolonising research methodologies. She drew on Linda Tuhiwai Smiths’ work to make an excellent case for the need to stop conducting research that takes away the knowledge and livelihoods of communities and suppresses their identities.
This introduction to the theory and philosophy of PAR was followed up by an overview of different creative PAR methodologies, from body-mapping to photovoice. We also learned about the personal skills PAR researchers need to develop; reciprocity, self-reflexivity, respect, self-awareness, humility, and compassion amongst others.
On the second day, Dr Renedo encouraged students to think critically about participation in health. She gave on overview of the body of work she’s developed with Professor Cicely Marston focused on understanding how community participation and patient involvement in healthcare research works in practice: what works, why and how? She started the day with an introduction to work they have developed on theorising participation and using participatory approaches in health research. Their work has addressed important evidence gaps on participation in health by developing critical theory on undertheorized aspects, which are also neglected in practice. In this first session, students learned about the importance of space in making participation successful and inclusive, and about the role of temporal, social and material aspects of participatory space in influencing participants’ ability to negotiate their rights for quality health and to mobilise for better health.
In this session, students also learned about how social relationships and research practices at the core of participatory research shape the identities of participants, that is how participants see their role and capacity to influence. Dr Renedo closed this first session with a discussion about the social production of new forms of knowledge through participatory processes; what happens when the technical knowledge of researchers and healthcare providers interacts with the knowledge brought by communities?
In the second session, Dr Renedo stimulated group discussion around the guiding principles for participatory research. She introduced students to guiding principles for ensuring participatory research is ethical and inclusive to deliver bottom-up solutions for the communities we are working with. Students were tasked with planning a participatory research project with vulnerable communities. Before they started, Dr Renedo warned students about some of the potential risks of participatory research, for example, community disengagement, mistrust and reinforcement of pre-existing inequalities and power hierarchies.
In the afternoon, Dr Renedo presented a case example of DEPTH participatory research project co-produced with sickle cell disease (SCD) patient advocates (patients with SCD and carers of patients with SCD). Her session was followed up by presentationson PAR conducted by LSHTM research degree students: Asmae Doukani, Stefanie Fringes and Chris Obermeyer.
Asmae Doukani gave a talk about her participatory research journey and reflected on her personal learnings about meaningful user involvement in the development and evaluation of digital mental health interventions. Chris Obermeyer gave an overview of his grassroots participatory research involving communities in improving PrEP promotion in Ukraine. Stefanie Fringes helped students think critically about how to do participation with young people as research partners in the context of HIV in adolescent health.
Alicia would like to give a special thanks to Ayako Kohno and Teranee Techasrivichien, from Kyoto University School of Public Health, for inviting us to participate in the workshop. She adds:
“I was truly inspired by all presentations and by Kyoto University students’ critical insights into participatory research. The workshop stimulated truly collective learning. I look forward to continue conversations and see how the students can draw on the learnings from the two-day workshop in their own research.”
A recording of the two-day workshop will be available via Kyoto University’s website. We will add a link to these resources when they are ready.
Today’s blog is very topical because LSHTM doctoral researcher and DEPTH member Shelly Makleff has been attending the SVRI Forum 2019 in Cape Town this week to present a co-produced project by LSHTM, IPPF/WHR and Mexfam that highlights the potential of sexuality education as a strategy for preventing partner violence. DEPTH director Professor Cicely Marston is co-PI. Her presentation is entitled “Preventing intimate partner violence among young people – a qualitative study examining the role of comprehensive sexuality education”. Now let’s hear a little more about the project…
We wanted to know if sexuality education can help prevent partner violence. The London School of Hygiene and Tropical Medicine (LSHTM) partnered with IPPF/WHR in New York and Mexfam in Mexico City to try to find out. We have promising results that we’ve begun to publish. Below we share some of our key findings.
Mexfam taught a 20-hour course to high school students on a weekly basis for one semester. We evaluated this course through a longitudinal study with nearly 300 students. Using observation, surveys, interviews, and focus groups, we found four main ways in which sexuality education seems to contribute to intimate partner violence prevention and response.
First, encouraging critical reflection. The course provided a space to share experiences and debate beliefs about violence. For example, questioning whether jealousy and possessive behavior were signs of love, or rather, forms of violence. One young woman said:
The health educator made it very clear to us that if your partner really loved you, they would accept you as you are. They wouldn’t be telling you ‘don’t dress that way’ or ‘I don’t want you to talk to him.’ That is a type of violence.”
Participants also said the course helped them rethink gender norms. One young man told us:
My classmate said that the man has to work, and the woman should stay in the house. It made me think. I think you need to give freedom to both people in a relationship.
Second, building assertive communication. Participants said they became more comfortable talking about relationships and sexuality as the course progressed. They also shared the information from the course with friends and family, intervened in violence around them, and some left possessive relationships.
Third, promoting care-seeking behavior. Health educators emphasized the right of young people to receive care, and provided information, support and referrals. Students told us they felt more prepared to seek care if it became necessary. Indeed, the percent of participants who knew where to seek support for violence more than doubled over the semester.
Fourth, ongoing training and support to health educators. This is crucial so they are prepared to address conflict in the group, encourage critical reflection, and create a safe space for discussion.
Based on the three-year project in Mexico, we have recommendations for implementation and policy that can be found in our briefing paper. Here are some highlights:
First, communication with participants can continue after an intervention ends, to encourage access to support and care in the long term.
Second, sexuality education should engage teaching methods and participatory activities relevant to participants’ lives.
Third, such courses should aim to shift gender norms, avoid heteronormative bias, and highlight forms of non-violent behavior.
Finally, school authorities should formally support such interventions and ensure that teachers and other staff are trained to address school-based violence.
In conclusion, we suggest that relatively short-term sexuality education has real potential to help prevent intimate partner violence. The findings reinforce the importance of working in schools – which are strategic both as settings for violence and for its prevention.
You can read more about our findings here:
Makleff S, Garduño J, Zavala RI, Barindelli F, Valades J, Billowitz M, Silva Márquez VI, Marston C. “Preventing intimate partner violence among young people – a qualitative study examining the role of comprehensive sexuality education.” Sexuality Research and Social Policy (2019). https://doi.org/10.1007/s13178-019-00389-x
Briefing paper: “Preventing intimate partner violence among young people– The role of comprehensive sexuality education.” Advancing Learning and Innovation on Gender Norms (ALIGN) (2019).
In our latest blog, DEPTH researcher Sam Miles discusses his latest publication for new social science collection The Geographies of Digital Sexuality. Sam’s chapter explores the practices of men seeking men on online dating apps and argues that these practices can be categorised into different identities, or ‘typologies’, of user.
I was invited last year by Andrew Gorman-Murray and Catherine J. Nash to write a chapter for their new book, The Geographies of Digital Sexuality. I thought for a long time about what to write about. My work has been moving over time from queer male technologies and fieldwork ethics to sexual behaviour, and from there to sex and sexuality more generally, as our new ACCESS project at London School of Hygiene & Tropical Medicine develops. I’m still fascinated by technology, sex and relationships, but looking globally at some of these relationships in very different contexts – marginalised populations, challenging settings, and complex geopolitical environments in the global South.
We know that gay and bisexual men in Europe and north America are a comparatively privileged sexual minority (although MSM – men who have sex with men, but don’t identify as gay or bisexual – are often less privileged), especially compared to lesbian, bisexual, and transgender people. The lives and experiences of a wider range of people need further amplification – especially given common misunderstandings about technology use in socioeconomically disadvantaged settings; people are often surprised to hear that smartphones are used almost everywhere in the world. This includes within seriously deprived settings, where it may be the single most important object for a family’s livelihood or income. That does not mean it is not also used for communicating, partner-seeking, or pornography in any number of these settings.
Nevertheless, one of the things that people still ask me a lot about when they hear about my PhD and its research into smartphone dating apps is about people’s behaviour online: things that people complain about seeing again and again. It’s as if there are a list of the ‘usual suspects’ to be wary of when using dating or hook-up apps, from the ubiquitous time-waster (‘talk, talk, talk, and yet never agrees on concrete plans to meet up) to the catfish (‘Amazingly good looking but interested in me!’, or ‘keen to meet but there’s something weird about the photos’). It provoked new questions based on online identity: Could we sketch out different ‘types’ of dating app user? Would those ‘types’ translate between queer and heterosexual? Do different apps host different types?
My qualitative fieldwork suggested that male-male apps contained ‘types’ that were far more specifically defined, and more commonly recognised by a whole range of users, than anything I was reading about being theorised elsewhere, so I looked into it further and developed three ‘types’ of user: the Embracer, the Timewaster, and the Minimalist. Whilst the vignettes I write in the chapter are fictional, they are amalgamated from a range of real-life users I spoke to, augmented by the profiles of other users that my participants discussed repeatedly (and usually in strongly positive or strongly critical ways). These profiles build an interesting picture of different modes of use for a market-dominant app like Grindr or Tinder. These ‘types’ of user, and the strong feelings they provoke in others, also speak to an argument I bang on about a lot: that the social codes of these GPS-enabled apps have yet to catch up to their digital sophistication. The result is user enthusiasm for what these platforms can offer in meeting new people – especially important for sexual minorities – tempered by real frustrations about other people not taking the app seriously, or taking it too seriously, or just not reflecting the user’s desired path to encounter.
Even more fascinating perhaps is the finding that the Timewaster – an app user who is keen to chat, seemingly reciprocates interest, and yet keeps postponing a date or other physical meeting, seemingly content to exist only in cyberspace – is almost universally criticised by users. Yet many of these same users sometimes exhibit precisely this behaviour themselves. This paradox serves to emphasise that we must not think of ‘types’ or user typologies as somehow fixed, but instead flexible categorisations that users might adopt, consciously or not, at different times in their app use over time. You may not see yourself as a time-waster because it’s not a trait you think is very attractive, but that doesn’t mean that sometimes you’re not that person to another frustrated user.
The picture built up by this qualitative work is one of seriously mixed feelings. Users characterise their time using online partner-seeking apps with as much ambivalence as enthusiasm. Thinking more about what the categories I have sketched out above might mean for online partner-seeking, and how social and/or sexual connection happens (or doesn’t happen) online can help us to think about larger questions far beyond the scope of dating apps. These include who we are when we’re online, and why that still feels ‘removed’ or disembodied from what should by now be a more taken-for-granted, hybridised digital-physical reality.
How do researchers go about interviewing people about sex and sexualities? To what extent do we – or should we – share our own experiences? And what kind of ‘spaces’ do these highly personal conversations fit into?
The (in)famous male-male dating and hook-up app Grindr recently celebrated its 10th birthday. To mark the anniversary, a whole range of articles have cropped up variously celebrating and lamenting Grindr’s influence across the world (by which I mean literally across the world – it counts nearly 4 million active users across 234 different countries (Grindr, 2019)). What makes this generation of mobile phone matchmakers different from the online platforms that went before them, for example Gaydar, match.com, Yahoo chatrooms? Apps such as Grindr are GPS-enabled, which enables users to ‘rank’ other users of the app by proximity, ensuring that potential matches can be discovered and introduced in real-time across physical space.
Reflecting on Grindr’s first decade, The BBC identifies a ‘rocky relationship’, whilst VICE magazine explores Grindr’s relationship with identity fraud and drug-based ‘chemsex’; meanwhile, Gay Times reports that 56% of Grindr users believe they can find true love on the app. Whatever your opinion on it – and there are many – there is no doubt that this mobile phone matchmaker, along with its competitors Hornet, Scruff & Jack’d, has had a profound impact on gay and bisexual communities. These apps have also opened up new avenues for men seeking sex with men (MSM) who for whatever reason – familial, cultural, or religious – do not identify as gay or bisexual.
The bigger question raised by these recent articles seems to be: how do dating and hook-up apps impact on same-sex and queer relationships today? This question cannot be answered by quantitative usage data alone. After all, we know that high usage does not necessarily mean high popularity. We need to explore peoples’ real life experiences in order to more fully understand the impact of dating and hook-up apps on same-sex and queer relationships.
I decided that the best way to get a detailed understanding of how these apps influence sexual and social behaviours would be to interview users about their experiences online, offline, and in the ‘hybrid’ space bridging the two, where virtual introductions result in real-life encounters. My doctoral research revealed some important findings: (1) that dating and hook-up apps play a significant role in how men now meet other men, especially within wider debates about the ‘death of the gay bar’, and (2) that the relationship between mobile phone dating app users and the people they meet can be awkward, with social cues yet to catch up to the sophistication of the technologies in use.
The sensitive nature of the research topic meant that there was an array of ethical and practical challenges for me to grapple with during my doctoral fieldwork. In my recent Area paper, I reflect on some of these challenges and explore how researchers and participants can work together to create a meaningful space that not only enables data collection, but facilitates honest and valuable conversation. I consider what the researcher’s responsibility should be for a participant’s safety in this discursive space. I also reflect on how ‘involved’ I should be as a researcher. I’m a person, not a robot, and several decades of feminist research has already explored the strengths and issues bound up in bringing ‘yourself’ into the research field (for example, see Bain & Nash (2006) and Smith (2016)). But the opposite extreme of the objective, positivist robot researcher is the inappropriately involved one, a role which would be both institutionally unethical and personally unacceptable. I therefore identified my own boundaries as well as the participants’s boundaries. The result was a co-constructed discursive space that we worked together to construct, perhaps surprisingly, in totally public venues and in one-off, hour-long interviews rather than more private or longer-term meetings. These were not ‘intimate’ spaces in a traditional sense, but nevertheless the space-within-a-space that we constructed invited app users to speak about highly personal experiences, some for the first time ever.
I also make the case for the using public places for staging sensitive conversations. The assumption that private matters cannot be discussed in public requires a rethink. Public spaces like libraries or cafes enfold within them more private spaces – not just actual booths or nooks, although these can contribute – but I’m thinking here about more conceptual spaces. These are built simply via one-to-one, in-person conversation in a space where a hubbub of background talking, or the hiss of coffee machines brewing, provides a backdrop to conversation that can be very productive.
Finally, when it comes to dating and hook-up apps in particular, I suggest that people are particularly keen to share their views because the social norms of dating app use are so complex and still so poorly understood. For lots of people online dating remains taboo. In this context, the chance to share their thoughts, feelings and experiences when it came to the digitally-introduced, physically-involved relationships these platforms offer may have been liberating.
Love dating apps or hate them (or both), what I hope the article communicates is that we need to talk more with users about the ways in which technologies impact on our personal lives, in order to think about the social codes developing from their use that will inform a whole range of wider contexts.
What do you think? Let us know by commenting below…
Have you tried time blocking to deal with the endless onslaught of tasks in academia? It works for us. We’d love to hear about other experiences in the comments too.
Universities are sources of endless admin and bureaucratic reporting processes (e.g. supervision contact points for overseas students, online appraisal systems). The ever-increasing managerialism and research-related admin work (ethics applications and funding reporting systems) leave little time for doing research and knowledge production activities. It is very difficult to free up time to engage in in-depth academic activities such as data analysis, and writing.
To protect ‘thinking space’ and to manage work overload, we use a very simple tactic: calendar time blocking. We use this in two ways:
To ensure we complete all of our responsibilities (as a task checklist)
To manage our time and energy better.
Calendar time blocking helps us meet deadlines, but also helps plan for the different types of knowledge, levels of concentration and time needed for specific tasks. For instance, in-depth conceptual work and theory development, writing, and analysis require extended periods of time and can be jeopardised by interruptions such as admin requests, emails and meetings. It works simply by treating each task as requiring an appointment to complete. You estimate how much time you will need to complete the task, and make an appointment accordingly in your calendar.
Alicia: I block Fridays as a writing day, and try to block 2-3 day per week when I need to do more intensive analysis and writing. I have chosen Fridays as a writing day because this is when there are fewer emails and requests for meetings. Because some admin work requires prompt responses, I leave tasks such as emails and form filling for times of the day when my brain works less efficiently and just before a break (e.g. lunchtime and/or end of the day before leaving the office). I try to organise meetings around these times too, and when possible I try to concentrate meetings on the same day(s) of the week. For those days full of meetings I put fewer in-depth tasks in the calendar for the little remaining time available.
Cicely: I increasingly block almost every task, even fairly small ones, in my calendar. It can be alarming to see the reality of how much time is used up in management and admin. I have several research projects that I am either leading or contributing to, so I need to have leeway in my calendar for unexpected or overrunning tasks. For this reason I only block four days (usually Monday to Thursday) in my calendar – inevitably I have spillover into the ‘spare’ day and it saves me having to rejig all the time blocks in subsequent weeks. In the unusual cases where there have been significant delays that will affect future tasks, time blocking means I can more easily see if I need to rearrange non-urgent meetings or tasks so that I can still meet deadlines, or whether I need to give advance notice that I might be late completing a task. I like it when others use time blocking because they can give me a realistic idea of when they can complete a task and I can plan my work accordingly. Writing this blog with Alicia has made me reflect that I should aim to have a weekly writing day as well as a ‘spillover’ day blocked in my diary.
Calendar time blocking helps us by protecting our thinking time; by helping avoid the situation where admin tasks interfere with the flow of ideas and reflective processes needed for in-depth academic work; and by stopping us quickly jumping into smaller admin tasks at the expense of dealing with more painful tasks, such as writing. It is easy to fall into dealing with tasks that can be completed quickly and avoid slower more in-depth ones which produce longer-term outputs.
Calendar blocking can also bring collective benefits. For instance, it helps when justifying to others why you cannot instantly respond to their requests. It can also help others organise their calendars – we often set our calendars to produce and deliver papers so that we coincide with the ‘free’ space in our co-authors’ time-blocked calendars. Time blocking also helps students know when they can access our support and this helps them plan ahead to deliver their writing work, with the assurance that we will send feedback on time.
Tip: In outlook, emails can easily be converted into appointments or meetings. Using this means you have relevant details in your time block ‘appointment’ when you work on the task (assuming you are time blocking using Outlook calendar), rather than having to go back and search for them.
Do you use time blocking? Any tips about how to do it better gratefully received in the comments!
PhD researcher Shelly Makleff and Professor Cicely Marston, members of the DEPTH research hub at London School of Hygiene & Tropical Medicine, have collaborated to write a new blogpost about the value of qualitative data in assessing sexuality education.
Their piece, titled ‘Qualitative data shows how sexuality education can address social norms’, explores how comprehensive sexuality education (CSE) might influence young people’s beliefs and behaviours, via a study examining a one-term comprehensive sexuality education programme implemented by Mexfam. The researchers employed an in-depth, longitudinal qualitative approach to the research field to learn about changes as they were happening, rather than after they had taken place. As Makleff and Marston argue:
A combination of retrospective interviews with a wider range of participants and longitudinal interviews with a small number of “case study” participants can be useful: it illuminates a range of participant experiences while enabling researchers to zoom in on some of the small and gradual changes that they experience.
You can read the full blog on the ALiGN website, here.
Our latest blog is by Dr Sam Miles, who discusses the recent publication of his academic article ‘Still getting it on online: Thirty years of queer male spaces brokered through digital technologies’ in the journal Geography Compass.
By way of introduction, I thought I’d borrow from my latest article to give you a snapshot of what I’ll be talking about in this blog post:
I call on contemporary scholarship to demonstrate how [mobile phone] platforms offer a way into answering larger cultural questions about cruising, queer social life, and space. I conclude that these locative digital media occupy a distinctive position in the history of queer technologies and signal a shift in how gay male online spaces are both conceptualised and experienced.
In the social sciences, theories of sex and sexuality have long been tied up in ideas of space and place. There are any number of examples we can think of, from the spaces of sex work and how these spaces are regulated or policed, to the rise (and more recently, fall) of the commercialised ‘gay village’ in the global north, which is often discussed in terms of its relations with economics and gentrification.
Trying to better understand the relationship between sex and sexuality and space is important because beyond theoretical ideas, it has an impact on how a location might influence sexual identity, practices or safety. For example, healthcare interventions for sex workers might depend on a safe space accessible from their working space. Civil rights demonstrations or an LGBTQ pride parade in a repressive political environment can be read as a temporary ‘queering’ of the orthodoxy or regime by making space for sexual difference in streets normally controlled by the mainstream.
My own research has focused on digital technology and sexual practices. I have been interviewing ‘MSM’ (men who have sex with men, including but not limited to gay and bisexual men) to learn more about how recent developments in technology mean that queer male space is not just physical, but virtual too.
Geography Compass invited me to write an article for them reviewing the history of queer male online space. I think this topic is particularly fascinating is because the social sciences have long tracked physical queer spaces, and this research is widely known; less is known about how online platforms contribute to producing or re-making queer spaces. What I specialise in is locative media – by which I mean GPS enabled mobile phone apps – that are now very popular amongst MSM to network and meet others for social and/or sexual connection. These locative apps include Tinder, Grindr and Hornet, and have a huge user base around the world. Grindr alone counts nearly 4 million users per day.
I argue that the development of mobile internet over the past decade, and the GPS abilities that are now built into even basic smartphones, strongly influence how men meet other men for relationships and sex. This in turn has an impact on ‘offline’ LGBTQ venues such as gay bars or cruising sites, as well as traditional understandings of ‘queer community’ and what that might mean. As I write in the article:
Male–male locative media can strengthen and extend social‐sexual networks, facilitating meetings with like‐minded men across a borough, district, or city. This is especially true among the users for whom a queer community is out of reach because of their isolation, whether familial, social, or geographical.
Of course, being connected to other sexual minorities through an app does not automatically constitute a community, but some users do report a sense of like-mindedness, even if this does not match up with the more established ways in which we define community.
Beyond MSM populations specifically, this idea of technology redefining community, whether for better or worse (or indeed both!) is crucial to how we understand how technology mediates human behaviour. In a public health context, technology needs to be harnessed in ways which are alert to local conditions, whether that is in terms of unequal access to technology, or an affinity (or restriction) to certain kinds of communication device. At the same time, the widespread adoption of mobile phone technology – 5 billion people worldwide now have access to mobile phones – shows that digital technology ‘on the go’ will become ever more central to daily life. The job now is to extend research carried out on mobile digital technologies and sexualities to different populations to help us understand more about how these platforms will impact on social and sexual practices in the near and distant future.
You can read Sam’s article here and follow him on Twitter here.