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DEPTH (Dialogue, Evidence, Participation and Translation for Health)

DEPTH (Dialogue, Evidence, Participation and Translation for Health)

Research into community dialogues and participation to promote health, increase equity and amplify less-heard voices.

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We conduct research to understand the implications and effects of community involvement and dialogue in promoting health, planning health services, and quality improvement of existing services.

Our work spans seven key research themes:

Voices and experiences in health
Community participation and citizenship
Dialogues about sexual and reproductive health
Transitions to adulthood
Digital life
Conducting and communicating science in an ethical way
Dialogue and the arts

Blog

Read our latest blog post.

Publications

Find out more about our work on community participation, patient engagement, and dialogues for health

Who we are

Meet the DEPTH team at London School of Hygiene & Tropical Medicine.

Updates

Find below the blog posts and recent news about DEPTH:

Updates List Block
Let’s talk about sex

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?

DEPTH researcher Dr Sam Miles was invited by the academic journal Area to write a blog for their outreach website Geography Directions, based on his recent article ‘“I’ve never told anyone this before”: Co‐constructing intimacy in sex and sexualities research’. In the blog, Sam explores the ethics of fieldwork in sex and sexualities research. Have a read… 

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.

Grindr Stock image

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…

References:

Bain, A., & Nash, C. (2006) Undressing the researcher: Feminism, embodiment and sexuality at a queer bathhouse event. Area, 38, 99–106. https://rgs-ibg.onlinelibrary.wiley.com/doi/pdf/10.1111/j.1475-4762.2006.00663.x

Damshenas, S. (2019) 56% of Grindr users believe they can find love on the app, study finds. Gay Times. Retrieved from: https://www.gaytimes.co.uk/community/119691/56-of-grindr-users-believe-they-can-find-love-on-the-app-study-finds/

Fox, L. (2019) 10 years of Grindr: A rocky relationship. BBC News. Retrieved from: https://www.bbc.co.uk/news/technology-47668951

Grindr. (2019) Grindr.com. Retrieved from: https://www.grindr.com/

Miles, S. (2017) Sex in the digital city: location-based dating apps and queer urban life. Gender, Place & Culture, 24, 1595-1610: https://www.tandfonline.com/doi/abs/10.1080/0966369X.2017.1340874?tab=permissions&scroll=top

Miles, S. (2018) Still getting it on online: Thirty years of queer male spaces brokered through digital technologies. Geography Compass. e12407. ISSN 1749-8198 DOI: https://doi.org/10.1111/gec3.12407

Miles, S. (2019) “I’ve never told anyone this before”: Co‐constructing intimacy in sex and sexualities research. AREA. https://rgs-ibg.onlinelibrary.wiley.com/doi/full/10.1111/area.12550

Smith, S. (2016) Intimacy and angst in the field. Gender, Place & Culture, 23, 134–146.

Staples, L. (2019) Grindr Users Talk Highs and Lows After Ten Years of the App. VICE Magazine. Retrieved from: https://www.vice.com/en_us/article/59x83d/grindr-users-talks-highs-and-lows-after-ten-years-of-the-app-1

Protecting ‘thinking space’: our experience of using calendar time blocking

In our latest blog, DEPTH team members Professor Cicely Marston and Dr Alicia Renedo explain how we actually get thinking (and writing) done when everyone wants our time.

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:

  1. To ensure we complete all of our responsibilities (as a task checklist) 
  2. 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!

Consulting an ethicist is the least common way of seeking to resolve ethical dilemmas!

For our latest blog we are thinking about ethical issues in research. Here, DEPTH staff member Dr Catherine McGowan discusses some of the roadblocks to resolving ethical dilemmas in the public health field.

DEPTH blog ethics

Ethical dilemmas are part of professional life. But how do we navigate these dilemmas successfully? How do we ensure that we are resolving dilemmas in a way that leaves us feeling as though we have taken the best possible course of action?

People regularly make difficult decisions in their daily lives and are accustomed to resolving ethical dilemmas based on personal reflection and consultation with family, friends, and colleagues. Resolving dilemmas in the workplace, for a public health professional, is different in the sense that decisions may affect the health and wellbeing of many people. For example, decisions about resource allocation – in a context in which the public need for services outweighs an agency’s capacity to deliver – can markedly reduce life expectancy in areas not receiving services. Making the best possible decision in such circumstances, one which promises the greatest common good, is often difficult. Yet recognising, understanding, and resolving ethical dilemmas is like any other technical competency. Training in public health ethics provides the basis for sound ethical decision-making, but how many public health professionals have received education or training in public health ethics? How often do public health professionals encounter ethical dilemmas? How do public health professionals approach complex moral dilemmas?

In our latest paper entitled Education, training and experience in public health ethics and law within the UK public health workforce we present the results of a survey of 562 public health practitioners in the UK. The Faculty of Public Health, the Royal Society of Public Health (RSPH), the UK Public Health Register (UKPHR) and Public Health Englanddisseminated a link to an online survey asking about experience, education and training in public health ethics. Nearly 40% of respondents were public health consultants or specialists; the rest were registrars, academics, directors of public health, practitioners, managers, nurses or midwives. Over half of the respondents reported encountering ethical issues on a monthly, weekly, or daily basis whilst just under a third reported that their organisation had implemented mechanisms, adopted tools, or recommended resources to facilitate consideration or resolution of ethical issues. Interestingly, when asked to indicate how they go about resolving ethical issues the majority indicated that they resolve them in discussion with colleagues or on ‘personal reflection’. That is to say: the least common way of seeking to resolve ethical dilemmas was by consulting an ethicist!

We also asked respondents how dealing with ethical issues affects them: over half questioned whether they dealt with ethical issues in the best way and a quarter reported feeling anxious about dealing with ethical issues at work. Interestingly, many respondents indicated that they enjoyed the challenge of dealing with ethical issues. Unfortunately, relatively few respondents had received training in public health ethics.

 Moving forward, we believe there is a need to develop and support capacity among the public health workforce through the provision of education, training, guidance, and mentoring in public health ethics. Public health professionals should be equipped to make the best possible decisions in complex circumstances for the betterment of health, and wellbeing and equity.

Look out for our upcoming paper in the Journal of Public Health – it will be published as part of a thematic issue on public health ethics. We’ll post about it on our Twitter feed and DEPTH website, so look out for updates.

LSHTM DEPTH blog health networks

 

New ALiGN blogpost by DEPTH team members: Qualitative data shows how sexuality education can address social norms

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.

DEPTH blog mexfam infographic
How to present quotes from interview transcripts: the ‘tidying up’ dilemma (including: what do with your own less-than-perfect sentences)

Two members of the DEPTH team, Cicely Marston (supervisor) and Shelly Makleff (PhD student) discuss how best to present quotations from interview transcripts when writing up. We talk about how to present ‘untidy’ speech (e.g. ‘um’, ‘er’, repetition), how much to ‘tidy up’ quotes, and the implications of any ‘tidy up’.

Shelly’s interviews and analysis have been done in Spanish and the quotes she presents in the final write up are translated into English. Here we present a lightly edited version of a supervisory email interchange we thought might be useful to others.

SM: How do you clean up a transcribed quote to present it in an article? Every time I cut some words, even just filler words, should I mark these omissions with an omission marker (such as […])? Or do I have the liberty to just cut those fillers without a […], in order to create a clean and readable quote?

CM: In my opinion all cuts should be marked with an omission marker (e.g. […]). I have argued about this with a journal before because newspapers use ellipses to indicate omissions (rather than a specific omission marker that only indicates omissions). The issue is that when you do this, there is no obvious way to mark pauses in someone speaking so you would need to find another pause marker that won’t be confused with an omission marker. You could do this by writing [pause] every time, but this also makes quotes hard to read if there are a lot of pauses. When you are using translated quotations, it is less clear what to do because for instance, you might keep the translation ‘clean’ by not including every single one of the filler words (though I would recommend you keep them as much as possible where there is a direct translation (e.g. in Mexican Spanish, hesitation where people say ‘este…’ can be translated as ‘um…’ in English), or at least if there is no direct equivalent, make sure you keep the spirit of the original which might have involved hesitations).

For translations, where it is good practice to provide the original language version in an appendix, one way to get around this is to present the original language quotations with all the pause markers etc included, and then present ‘tidied up’ translations in the body of the article. If you do this, you should mention it in the methods section so the reader knows they can refer to the original language quotations. Note that ‘tidying up’ is particularly challenging when you are working in your non-dominant language, which is all the more reason to present the original language transcript excerpts verbatim.

SM: Ok, so sounds like you’d always use […] to signify every piece of cut text in the article. For a conference poster, do you think it’s ok to leave out the […] for filler words so it’s smoother to read?

CM: I would keep it precise i.e. show where you have edited – I assume you won’t cut all the ums and errs. I get quite suspicious when I see a perfect quote because very very few people speak in complete sentences with no hesitations. if you genuinely think the hesitations are unimportant in any given instance, then you *can* edit them, but make sure there is a note that you have done this somewhere on the poster, for transparency.

SM: If I’m adding clarifying info in [], do I do that instead of or as well as the words that are being replaced? In other words, would it be “So for them [the students]” or “So for [the students]”?

CM: I would go with the longer version so that it is clear what they actually said versus what is your interpretation/explanation.

SM: Can I add punctuation and make sentences to create more clarity, when the speech was transcribed as a long run-on sentence?

CM: Yes, definitely improve the punctuation – transcriptions are almost always badly punctuated, especially when the narrative includes reported speech, in which case transcribers often give up on attempting to punctuate it altogether – and to be fair it can take a while to get it right even if it is quite obvious without punctuation what the speaker has said. It is worth doing because it does make it much harder to read when transcripts not properly punctuated. If you are not sure how to punctuate the sentence from the transcript alone (e.g. it is unclear where the emphasis in the sentence was), you will need to go back to the original audio to ensure your ‘new’ punctuation correctly represents what was said.

SM: I wish there were guidelines for this! In a quick internet search, I didn’t find any, at least not that are clear per discipline. While looking for guidelines I did see an article about the diversity of perspectives among academics about how they edit qualitative quotes. One perspective in favour of editing out the filler words pointed out that if participants saw their own quote with all the filler words, they’d feel embarrassed, and it isn’t an expectation that everyone speaks perfectly but that as researchers we should present their ideas as clearly as possible in a way they’d feel comfortable with. And actually, in Mexico when we shared the transcribed quotes with the health educators, they felt embarrassed about it, joking that they needed diction classes. They even made a meme of their horrified reactions when they read their words on paper and heard how they talked (see below). For the presentation of the data, we hadn’t really cleaned up the quotes, it was mainly verbatim, but the idea still stands- the way we represented them didn’t make them sound eloquent, and that embarrassed them.

Transcript recording meme CMSM LSHTM DEPTH

This meme was created by health educators in Mexico (Ana Karen Alameda Esquivel, Benjamín Israel Bellazetín Ruíz, Yaret Gutiérrez Cruz, Karla Alejandra Medina Alcántara) who were research participants, in response to hearing us read out their own quotes verbatim. [Translation: first picture – when they give you the results from the course you implemented; second picture – when you see the transcription of how you speak].  Presented here with their permission.

CM. I agree that if the quotes have names attached to them, the person might prefer a ‘cleaned’ version, but your quotes are anonymised and so from an individual perspective I don’t think that is too much of a concern.

Having said that, it’s true that original, not tidied-up quotations might contribute to a discourse of the ‘other’ being inarticulate. People who are looking for ways to find others inferior will likely find them regardless and so I’m not sure that compromising the integrity of the transcript will help (although I’m open to arguments to the contrary).

Overall, though, going along with the idea that there is a ‘better’ way to speak brings its own problems. Should we all speak in perfect sentences? Who determines what is ‘perfect’ or ‘best’? This is especially difficult if you are trying to ‘tidy up’ sentences that were spoken in another language than our dominant language. As researchers we should commit to transparency. Interviewers who worry about their sentences should probably listen back to the interviews – they will hear that it sounds very normal, even if they hesitate, repeat words, use filler words, reframe questions and so on. It’s important to build rapport – if you don’t naturally speak in 100% full sentences in real life, why would you do so in an interview? Being inauthentic, or struggling to present a more perfect self, may well have a negative impact on the interview overall.

What do you think? How have you handled these issues? Let us know in the comment section below. If you can’t see where, click on this article headline and scroll to the bottom.

Still getting it on online

This blog post 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.

Sickle Cell, Sociology, Scotland: Report-back from the BSA Medical Sociology conference

What is the legacy of medical sociology? How has it shaped other disciplines and practices? And what is its role in challenging the status quo of inequalities in health?

These were some of the topics discussed by very talented people at this year’s MedSoc (Medical Sociology) Conference in Glasgow. These were also some of the issues that drove our aim to explore how transitions to adulthood for young people with sickle cell could be improved and how healthcare services could help support these. The conference provided a great opportunity to present our sickle cell research.

Our presentation focused on how health transitions shape the identities of young people and how this contributes to the ways in which young people develop into adult patients. Transitions to adulthood can often bring challenges, and for young people with sickle cell, the challenges often faced in education, social and emotional transitions to adulthood are complicated by their condition, and they must navigate these complex changes as well as changes in their hospital care that can bring problems as they move from child to adult health services.

There was a range of interesting presentations to choose from. Martyn Pickersgill’s fascinating talk about the dialectic between patient experience and diagnostic practice, resonated with some of our findings on the hybridisation of knowledge through the dialogue between ‘subjective’ patient experiences and ‘objective’ evidence. Charlotte Kühlbrandt’s ethnographic paper helped to shed light on the intricate relationship between citizenship/non-citizenship and patienthood/non-patienthood in the context of Roma Health Mediation in Romania. In this case, health mediation becomes correction in the production of normative forms of citizens and patients. In our case, we showed how healthcare transitions become self-disciplining ‘at a distance’ and form part of a relentless process of self-governance through which young people try to become the types of patient and citizens they ought to be.

Eva Krockow made us think about how we balance the individual versus collective good when we make choices about antibiotic prescribing.

The panel plenary, with a focus on inequalities, was fascinating. The keynote papers from Professor Ellen Annandale discussed the ‘gendering’ of health inequalities and the embodiment of global gender power relations such as the health consequences of biogenetic trade. Professor Hannah Bradby pointed out barriers faced by forced migrants across Europe, the stratification of migrant status and how this interacts with “acceptable” forms of vulnerability.  Some migrants find themselves having to amplify and enact their vulnerability (mental health) to access care and citizenship status. Professor Graham Scambler’s keynote paper on “What’s Left of Class for medical sociology?” encouraged discussion about our role as sociologist activists in challenging health inequalities.

With Scambler’s call to action, I left the conference eager to continue my commitment to medical sociology and critical engagement with inequalities in health. You can keep up to date with our work in these areas via our websiteDEPTH twitter account and our This Sickle Cell Life project twitter account.

Presenting at the forthcoming BSA Medical Sociology Annual Conference
sickle cell life blog
BSA logo
this Sickle Cell Life photo

This week, we are heading to Glasgow for the BSA Medical Sociology Annual Conference to share a sneak preview of our findings from This Sickle Cell Life: voices and experiences of young people with sickle cell

Sickle cell disease is a genetic blood disorder disproportionately found in minority ethnic communities in Britain. It is a chronic debilitating condition that both causes cumulative damage to multiple organ systems, and causes acute pain.  

This Sickle Cell Life is part of the work of DEPTH research group at LSHTM. The project explores how people move from using child to adult healthcare services and asks young people about their experiences of living with sickle cell. Transitioning to adulthood is obviously not just something that affects clinical experiences and so we also explore education and relationships, and ask young people what is important to them. 

At the BSA MedSoc conference we will talk about how healthcare transitions shape the identity of young people, and how these transitions help ‘make’ particular kinds of patients.  

Why focus on identity? Health transitions need new health knowledge and new behaviours to develop, but they also need development of self-perceptions and understandings of how a person should behave as an adult (rather than a child) patient. In this way, identities play an important role in shaping health practices and beliefs. Understanding identity development during transitions can help explain why some young people transition smoothly or less smoothly into healthy adulthood. 

In our presentation, we will talk about how ideas and discourses about self-management and healthy lifestyle within healthcare today act as a way to discipline young people “at a distance”, to quote Miller & Rose (1990) and influence their behaviour. These healthcare self-management discourses intersect with demands from schools that are often not compatible. For instance, schools demand that young people excel and become entrepreneurial, competent individuals, but excelling at school is far more difficult for young people who have to spend time in hospital, or who have to rest regularly to avoid having a pain crisis. These intersecting demands can translate into conflicting “self-disciplining” identities.  

For young people with sickle cell, we found that transitions to adulthood involve relentless self-disciplining and self-surveillance to try to be as healthy as possible, while also aspiring to work hard so that they can develop and meet educational and career goals.

You can follow our live updates from the BSA conference on our Twitter account, here.

Opioid overdose is a public health crisis – are fentanyl test strips the answer? - by Catherine McGowan

Despite widespread media attention, repeated public health alerts, and the US President’s declaration of the opioid overdose epidemic as a ‘public health emergency’, fatal overdoses continue to rise.

A key factor is pharmaceutical fentanyl - a powerful synthetic opioid commonly used in clinical settings to reduce moderate to severe pain. Since 2014 illegally manufactured fentanyl, and many of its analogues, have been used to adulterate street drugs, principally heroin. Fentanyl is considerably more potent by weight than heroin and has been responsible for a significant number of fatal drug overdoses in North America since 2015.

Preliminary data released by the Centres for Disease Control and Prevention suggest that in 2016 more  than 20,000 people died from unintentional overdoses involving synthetic opioids (not including methadone) in the United States. In Canada, 3,671 people died from unintentional overdose in 2017 – 72% of these deaths can be attributed to fentanyl or fentanyl analogues.

Syringe and fentanyl test strip
Photo by Anne Koerber

So what can be done?

Harm reduction agencies in North America have begun to distribute test-strips which, when dipped in a drug solution, are able to detect fentanyl and many of its analogues. Is this a potential answer to the overdose problem? Perhaps; but caution is required.

First, research suggests that while self-testing technologies may be accurate in a laboratory, they may be considerably less effective when used in a real-life setting. Contamination, for example with injecting equipment, is more likely to occur in a street setting than a laboratory.

Second, the test strips are only able to indicate whether or not fentanyl is present in a drug solution, they do not indicate how much fentanyl is present. In cases where a comparatively large proportion of a drug is fentanyl, ‘test hits’ taken by users to reduce their risk of overdose in response to a positive test may be ineffective in reducing the risk of overdose.

Third, while some test strips have demonstrated greater than 95% accuracy, this still leaves the possibility of a false negative in one in twenty tests of fentanyl-adulterated drugs. People may inject heroin up to five times a day rendering false-negative a fairly regular occurrence. Additionally, test strips have shown to have a low detection limit, a drug sample may test positive when a minimal amount of fentanyl is present. There is a risk that users may not consistently modify behaviour if drugs are routinely testing positive without producing the anticipated psychoactive effect. 

Fourth, not all test strips are created equal. DanceSafe, a US-based public health organisation, in conjunction with the University of California San Francisco, tested five fentanyl test strips from three different manufacturers and found that four of the test strips did not detect carfentanil (a fentanyl analogue that is considerably more potent by weight than fentanyl); one test strip did not work at all.

The need to tackle the fentanyl crisis is clear. A recent drug-checking pilot carried out in Vancouver found that 90.6% of drugs submitted tested positive for fentanyl. Though fentanyl was most commonly found in heroin, it was identified in other street drugs as well, including: amphetamines, methamphetamines, crack, and cocaine.

And the problem is not confined to North America. Since 2014, six fentanyl variations have been identified in the UK, with several overdoses attributed to fentanyl occurring in the North East of England in 2017.

But should we be promoting test strips as a potential solution to the crisis?

In June 2018 Health Canada cautioned against relying on test strips alone, suggesting that other precautions were necessary to prevent overdose including: never consuming alone, consuming a lower dose - “start low and go slow”, and only using drugs in the presence of someone who is equipped with, and knowledgeable about the administration of, naloxone.

Providing appropriate messaging on how to interpret test results and their limitations is key. We must understand more about the accuracy and acceptability of fentanyl self-testing, and research should also aim to inform the development of an effective means of dispensing test strips – and associated risk-reduction measures - to those who do not regularly come into contact with harm reduction services. Education and appropriate harm reduction messaging to mitigate against the risk of false negatives alongside strategies to prevent or reverse overdose is crucial.

There is huge potential in self-testing technology but it must be used as part of a package of risk-reduction measures. The problem is clear but the answers are not.

Fentanyl self-testing outside supervised injection settings to prevent opioid overdose: Do we know enough to promote it?

Thoughts on our New ‘Slow Co-production’ Article - by Sam Miles

Our article, ‘Slow co-production’ for deeper patient involvement in health care’, has just been published in the Journal of Health Design. It’s open access so anyone can read it, download it and share it. The article argues that ‘Slow co-production’, achieved by involving patients in in-depth research, can help deepen patient involvement in health care. We describe how slow co-production offers a mutually beneficial form of patient and public involvement. It promotes patient-centred knowledge and helps us to examine and reflect on the co-production processes themselves, rather than always rushing to evaluate the end product as if it came into being without a process and a series of human relationships.

The thinking behind this article was our different and shared experiences of time constraints in qualitative fieldwork. We discussed, for example, those times when we felt pressured to move on from fieldwork when we didn’t feel we had been able to fully examine the narratives that we were learning about, or the interviews we were conducting. This restriction to fieldwork research is usually required for budget and time constraints, but it can feel frustrating to have to withdraw from the work being conducted when it feels like there is more to be gained.

More positively, we recognise that we have also experienced opportunities for more thorough, in-depth ‘slow’ research, including the Sickle Cell project that this new article takes as its case study. We believe that this kind of ‘slow’ research, as previously explored in healthcare research by Vincanne Adams et. al (2013) and Heather Mendick (2014) amongst others, is an important antidote to the ever-building pressures that are heaped upon the researcher. To make things yet more complicated, these pressures come from a range of different external sources: for example, a rush to complete fieldwork within a limited timeframe to minimise costs for the funding body, or unexpected delays in participant recruitment that mean that tightly organised fieldwork cannot extend beyond the ethical clearance period granted by the host organisation.

This idea of ‘slow’ working isn’t new (see, for example, Honoré, 2005, or ‘A Call for Slow Scholarship’ by Hartman and Darab, 2012), but it is worth repeating: so much of academic research is subject to the restrictions of budget, outcome, time constraints and metrics that need ticking off that we forget how valuable time and space are for germinating our best ideas. The useful analytical frameworks, or new theories, or vital links we make between seemingly unrelated sets of results are often produced in the scarce time we get to think deeply about concepts or theories at length. It is this type of time which has become most compressed in the contemporary neoliberal university, where there are so many competing demands on the researcher’s time and attention, from emails to admin to marking to service.

In our discussions we came to a consensus that for us, 'slow' co-production is about having time to genuinely engage with others in dialogues that cover more ground than simply sharing ideas, although of course ideas come from dialogue so the two concepts aren't separate. As well as sharing ideas, we can think of slow co-production in terms of humanity and human rights: specifically, reducing the gap between the researcher and the researched, and trying to find common ground in a qualitative methodology that productively disrupts some of the traditional boundaries that we have seen replicated over and over across social sciences and public health research. Therefore, as well as the point that taking more time in the research field can develop more positive, meaningful relations between the different parties in the research, we also want to stress that this in-depth, detailed, sensitive approach to interviewing is a specific form of co-production, and one that we want to pursue further across our DEPTH projects.

So, whilst our article is primarily arguing for the importance of involving patients and participants in qualitative research from the start and throughout the lifespan of a research project, we hope it also offers a small insight into the opportunities enabled by ‘slow’, thorough working between researchers and participants. This ‘slow’ process – scarce as it sometimes feels the opportunity is – can offer a really valuable way into mutually beneficial collaboration.

References

Adams V, Burke NJ, Whitmarsh I. (2014) Slow Research: Thoughts for a Movement in Global Health. Medical Anthropology, 33(3): 179-97. https://doi.org/10.1080/01459740.2013.858335 ​​​​​

Hartman Y, Darab, S. (2012) A Call for Slow Scholarship: A Case Study on the Intensification of Academic Life and Its Implications for Pedagogy. Review of Education, Pedagogy, and Cultural Studies, 34(1): 49-60. https://doi.org/10.1080/10714413.2012.643740

Honoré C. (2005) In Praise of Slowness: Challenging the Cult of Speed. New York: HarperCollins.

Mendick H. (2014) Social class, gender and the pace of academic life: What kind of solution is slow? Forum: Qualitative Social Research, 15(3):7. http://nbn-resolving.de/urn:nbn:de:0114-fqs140374.

Welcome to the introductory blog for the new website for our research group, DEPTH
DEPTH logo

Welcome to the introductory blog for the new website for our research group, DEPTH. We use the acronym DEPTH to bring together our research in Dialogue, Evidence, Participation and Translation for Health. We are a group of scholars in the Department of Public Health, Environments and Society at London School of Hygiene & Tropical Medicine who take an interdisciplinary approach to health. We conduct research into different types of dialogue and different people’s participation in health with the aim of increasing equity and improving health worldwide, and amplifying less-heard voices. Our new website aims to introduce a wider audience to our public health work. We see it as a space for communication and conversation – not just with academic colleagues, but also in policy debates, in education systems and with the wider public.

We think it is important to show our work to a wide range of audiences, not just specialists, and so we have listed all of our individual or combined efforts on this page, including summaries of each research paper listed in plain English, with concepts summarised and acronyms explained. You can read about the six Research themes that underpin DEPTH here. These research themes include our work on patient and public involvement, dialogues about sexual and reproductive health and young people’s experiences of Sickle Cell, and our work with Imperial College London on the ethics of electronic health records.

Finally, this regularly updated blog will provide a way for us to write about important studies in the field of community involvement, participation and public health. We will talk about our own research, but will also write about current affairs as well as research from elsewhere, when we would like to contribute to debate. We agree that one of the most important things we can do as academics is move beyond our own research specialisms to listen to – and amplify - the perspectives of those who may be less heard. We hope you will find these perspectives as valuable as we do.

We are excited to share with you this website as a portal to some of the pressing issues in sociologies of health. Community dialogue and participation is all about the exchange of ideas and synergies created by learning from each other. We can contribute the expert opinion, but we are just as interested in hearing from you. You can get involved via our new Twitter account, and you can contact us with questions, feedback or even your own blog pitch. Finally, look out for upcoming events on this blog page, where we will post details of future talks, meetings and events, as well as commentaries on new publications and policy.

Thanks again for reading and we look forward to sharing more about our work at DEPTH.

Cicely, Alicia, Catherine and Sam.

Tavistock sunflower
Research themes
2 columns Community participation and dialogue for health
Left column Community participation and dialogue for health
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We conduct research to understand the implications and effects of community involvement and dialogue in promoting health, planning health services, and quality improvement of existing services.

Voices and experiences in health

Using interviews and other innovative ways to elicit voices and experiences, we explore how social lives and health practices are intertwined. Our work for instance looks at young people’s sexual practice (e.g. the sixteen18 project), transitions to adulthood, including transitions between child and adult healthcare (e.g. This Sickle Cell Life), ways that fertility and contraception are bound up in life experiences and identity, and how people relate sexually with partners they meet online.

We recognise the need to engage with diverse partners and amplify less-heard voices in the coproduction of health knowledge. Our work examines the implications of dialogue for understanding experiences and developing more inclusive forms of knowledge, and explores and questions which voices are heard in conversations about health and which are left out.

Sixteen18 This Sickle Cell Life Patient & Public Engagement

Community participation and citizenship

Our work on community participation and citizenship has involved long term ethnographic explorations of public and patient involvement and engagement in research and quality improvement in the UK National Health Service. This research has helped us build theory around community participation, engagement, and empowerment, their effects, and the implications for citizenship in health. This work also addresses practical aspects of how to make participation successful such as how to create effective and inclusive spaces for participation, and how to orientate organisational culture so it helps rather than hinders participation.

Our international activities include work with the World Health Organization on guidelines on community participation to promote maternal and newborn health, as well as informing the ‘community engagement’ action area of the Global Strategy for Women’s, Children’s and Adolescents’ Health.

Patient & Public engagement

Dialogues about sexual and reproductive health

Much of our work involves dialogues about sexual and reproductive health and practice in diverse communities around the world. Examples include the sixteen18 project which explored young people’s sexual practices in the UK, and our Ghana project where we interviewed women about their fertility practices. Our work shows how introducing and promoting more honest and critical dialogues about sexual and reproductive health improves understanding of complex dynamics in relationships and hidden practices.

Sixteen18

Digital life

We are increasingly investigating digital life as a key mediator of dialogue, personhood and community. We are particularly interested in how dialogues are promoted and restrained in increasingly digital lives, and the interrelationships between digital lives and health. Our work includes advising government and providing commentary and analysis on effects of pornography on young people, and theoretical explorations of the use of mobile phone locative media apps such as Grindr and Tinder for sexual partner seeking.

Conducting and communicating science in an ethical way

Accurate science communication is crucial if people are to make informed decisions about their health. We work with the World Health Organization to ensure that global guidelines are based on the best interpretation of the scientific evidence. We also work with other groups such as COMPare in Oxford to investigate potentially unethical practices in trial reporting. We have debunked false claims about abortion and also revealed how inappropriately optimistic effectiveness claims about a version of the rhythm method (the Standard Days Method) are being used to heavily promote it in low-income settings.  

Conducting and communicating our research in an ethical way is key to promoting valuable dialogue with a range of people. By acknowledging the gaps in the way that researchers listen to participants, we can think of ways to improve on taking our lead from the participant. We want to amplify the voices that are less heard.

Electronic Health Records

Dialogue and the arts

Communication is a key part of science and we are committed to enhancing public engagement with our work. We have participated in collaborative ventures with artists (e.g. Bloomsbury Festival); framed the relationship between performers and audiences through the idea of co-production. We are interested in continuing to explore new collaborations in the future.

Publications
Publications
Preventing Intimate Partner Violence Among Young People - a Qualitative Study Examining the Role of Comprehensive Sexuality Education
Makleff, S; Garduño, J, Zavala RI; … Marston, C. / It seems likely that comprehensive sexuality education may help prevent intimate partner violence, but few studies have examined this. In this article, we explore the ways that a “gender-transformative” comprehensive sexuality education course in Mexico City may help prevent intimate partner violence. We conducted in-depth interviews and focus groups with students ages 14 to 17 as well as their teachers and health educators. The data suggest that the comprehensive sexuality education course helped young people develop strategies to prevent and respond to partner violence. We found four elements of the course that seem central to violence prevention. First, encouraging young people to reflect about romantic relationships, which helped them question whether jealousy and possessive behaviors are signs of love; second, helping them develop skills to communicate about sexuality, inequitable relationships and reproductive health; third, encouraging care-seeking behavior; and fourth, addressing norms around gender and sexuality, for example demystifying and decreasing discrimination towards sexually diverse populations. The results suggest that this promising and relatively short-term intervention should be considered as a school-based strategy to prevent and respond to partner violence.
2019
Sexuality Research and Social Policy, https://doi.org/10.1007/s13178-019-00389-x
Surviving Ebola: A historical cohort study of Ebola mortality and survival in Sierra Leone 2014-2015
Wing, K; Oza, S; Houlihan, C;... McGowan, C. / Various predictors for Ebola mortality have been identified but less is known about post-viral symptoms. Identification of acute-illness predictors for post-viral symptoms could allow the selection of patients for more active follow up in the future, and those in whom early interventions may be beneficial in the long term. Studying predictors of both mortality and post-viral symptoms within a single cohort of patients could also further our understanding of the pathophysiology of survivor sequelae. We performed a historical cohort study using data collected as part of routine clinical care from an Ebola Treatment Centre (ETC) to identify predictors of mortality and of post-viral symptoms. Our findings may add epidemiological support to the hypothesis that post-viral symptoms have an immune-mediated aspect and may not only be a consequence of high viral load and disease severity.
2018
PLOS ONE, https://doi.org/10.1371/journal.pone.0209655
Still getting it on online: Thirty years of queer male spaces brokered through digital technologies
Miles, S. / In this article, Sam Miles argues that the advent of the internet has been the biggest single impact on queer space over the last thirty years. The article reviews research that tracks the relationship between queerness and digital technology, from online chatrooms to desktop-based dating portals, and most recently GPS-enabled smartphone dating apps. Miles argues that queer spaces have become increasingly dominated by internet technology, and this has positive, as well as more ambiguous, effects on how men seeking men choose to meet and pursue social and sexual relationships. The huge popularity of apps including Grindr and Tinder mix online and offline space into a hybrid experience. This hybridisation has implications for wider technology use and social interaction for a whole range of people who use technology in their daily lives.
2018
Geography Compass, ISSN 1749-8198 DOI: https://doi.org/10.1111/gec3.12407
Slow co-production' for deeper patient involvement in health care
Miles, S; Renedo, A; Marston, C. / In this paper we argue that in-depth qualitative research can be seen as a way to engage in ‘slow co-production’. Involving patients from the start and throughout a piece of research, and ensuring their voices are central can help deepen patient involvement in healthcare. We use our qualitative research project This Sickle Cell Life as a study to demonstrate how working in depth with patients can generate detailed data for researchers and patient-centred knowledge that can help improve health services.
2018
The Journal of Health Design, 3 (1). pp. 57-62. ISSN 2206-785X DOI: https://doi.org/10.21853/JHD.2018.39
Pornography and young people’s health: evidence from the UK sixteen18 project
Marston, C. / In this short paper, Cicely Marston presents evidence from the recent LSHTM ‘sixteen18’ research project into young people’s sex lives. The project explored a range of sexual behaviours and attitudes; this paper focuses specifically on pornography. The paper argues that there is little evidence to support claims that porn is a public health danger, contrary to political and media coverage of young people in particular. The sixteen18 project did indicate some harms from using pornography as ‘sex education’, which suggests that sexuality education should emphasize the importance of mutuality and consent, but argues that sexual coercion and consent are better understood within the larger cultural context. Future research using an interdisciplinary and especially ethnographic approach can build up a holistic picture of porn use and health effects.
2018
Porn Studies. pp. 1-4. ISSN 2326-8743 DOI: https://doi.org/10.1080/23268743.2018.1434153
Setting the research agenda for induced abortion in Africa and Asia
Scott, RH; Filippi, V; Moore, AM; Acharya, R; Bankole, A; Calvert, C; Church, K; Cresswell, JA; Footman, K; Gleason, J. / Safe abortions are vital for ensuring the health and wellbeing of populations across the world, and research on abortion is essential to meet the UN Sustainable Development Goals. In this article, we report on the recommendations from a workshop for researchers working on contraception and abortion in Africa and Asia to discuss future abortion research. We argue that there is great untapped potential in designing intervention strategies including clinical innovations, quality improvement work, and involving local communities. Research with specific groups, including adolescents and young people, men, populations affected by conflict, and marginalized groups could increase understanding of provision, access to and experiences of induced abortion, in turn improving experiences of induced abortion in Africa and Asia.
2018
International journal of gynaecology and obstetrics. ISSN 0020-7292 DOI: https://doi.org/10.1002/ijgo.12525 Item availability may be restricted.
Improving the Measurement of Fertility Regulation Practices: Findings from Qualitative Research in Ghana
Marston, C; Renedo, A; Nyaaba, GN; Machiyama, K; Tapsoba, P; Cleland, J. / This article digs deeper into the question of why demographic data on highly educated urban woman in Ghana suggest, counter-intuitively, that they have low rates of both contraceptive use and fertility. Individual interviews and focus group discussions with women on contraception, reproduction and fertility regulation strategies showed that women often combine contraception methods, including calendar methods, withdrawal, condoms and emergency contraception. This in-depth data illustrates how they use contraception in more detail than a large-scale survey can manage. The article concludes that new ways of capturing women's complex fertility regulation practices should be considered, including additional survey items, new questions and specialist studies.
2018
International Perspectives on Sexual and Reproductive Health, 43 (3). pp. 111-119. ISSN 1944-0391 DOI: https://doi.org/10.1363/43e4517
Fertility regulation as identity maintenance: Understanding the social aspects of birth control
Marston, C; Renedo, A; Nyaaba, GN. / In this article about the social aspects of birth control in West Africa, we take a narrative-based approach to exploring how women regulate their fertility, and we show how they can maintain or express social identity. We identify three themes in educated Ghanaian women's accounts of how they navigate social demands on their identity when trying to regulate their fertility: secrecy and silence (hiding contraception and avoiding talking about it); tolerating uncertainty (for example using unreliable but more socially acceptable contraception); and wanting to be fertile. The article concludes that family planning programmes that fail to tackle these obstacles to regulating fertility will risk reproducing social spaces where women struggle to claim their reproductive rights.
2017
Journal of health psychology. p. 1359105317726367. ISSN 1359-1053 DOI: https://doi.org/10.1177/1359105317726367
The co-production of what? Knowledge, values, and social relations in health care
Filipe, A; Renedo, A; Marston, C. / Co-production is becoming a buzzword in healthcare settings. This article, published in PLOS Biology (2017), argues that the concept does not always explain what the implications of co-production might be for participants (or healthcare users more widely). We argue that co-production can be thought of as a process that encourages new ways of thinking about collaboration and participation in healthcare.
2017
PLOS Biology, 15 (5). e2001403. DOI: https://doi.org/10.1371/journal.pbio.2001403
Experience as Evidence: The Dialogic Construction of Health Professional Knowledge through Patient Involvement
Renedo, A; Athanasiou, A; Marston, C. / How can we advance knowledge through patient and public involvement? The relationship between healthcare professionals and patients is crucial. This article, published in Sociology (2017), draws on ethnographic work on patient involvement. We show how new knowledge is produced when professionals engage with patients, particularly in how healthcare professionals articulate the relationship between ‘subjective’ patient experience and ‘objective’ evidence.
2017
Sociology. ISSN 0038-0385 DOI: https://doi.org/10.1177/0038038516682457
Factors affecting effective community participation in maternal and newborn health programme planning, implementation and quality of care interventions
Howard-Grabman, L; Miltenburg, AS; Marston, C; Portela, A. / How can we enhance how communities get involved in service improvements? In this article, published in BMC Pregnancy & Childbirth (2017), we examine the factors affecting implementation of community participation strategies in maternal and newborn health programmes. We find that community participation is stronger where communities see women’s health as a collective responsibility, and where participation is linked into a functioning health system (such as via user groups). We suggest that viewing participation as an ongoing process is crucial to effective participation, as is focusing on creating an environment that enables communities to participate in improving health.
2017
BMC Pregnancy and Childbirth, DOI: 10.1186/s12884-017-1443-0
Improving implementation of health promotion interventions for maternal and newborn health
Smith, HJ; Portela, AG; Marston, C. / In this overview article for the BMC Pregnancy and Childbirth series on maternal and newborn health promotion, we present evidence that health promotion interventions may not achieve their objectives because they fail to engage with beneficiaries and the community. We argue that with better formative research, programmes can implement interventions to help individuals and communities access skilled care in pregnancy and childbirth. A participatory approach is key to this success.
2017
BMC Pregnancy Childbirth, 17 (1). p. 280. ISSN 1471-2393 DOI: https://doi.org/10.1186/s12884-017-1450-1
Oral Sex, Young People, and Gendered Narratives of Reciprocity
Lewis, R; Marston, C. / This paper looks beyond gender differences amongst young people in giving and receiving oral sex to explore their own perspectives on gender dynamics in oral heterosex. Here, we explore the stories told by 16-18 year old men and women in England in their accounts of oral sex via in-depth interviews. On one hand, oral sex on men and women was narrated as equivalent, while on the other, oral sex on women was seen as “a bigger deal” than oral sex on men. Young men and women used a ‘give and take’ discourse to make oral sex ‘fair’. We argue that ostensibly positive discourses about equality in sexual practices also obscure women’s constrained agency and work in giving oral sex.
2016
Journal of sex research, 53 (7). pp. 776-87. ISSN 0022-4499 DOI: https://doi.org/10.1080/00224499.2015.1117564
Does the evidence support global promotion of the calendar-based Standard Days Method® of contraception?
Marston, CA; Church, K. / This article examines claims about the effectiveness of the Standard Days Method® (SDM), marketed as a modern contraceptive method used in at least 100 countries worldwide. Its claim that it is 95% effective when used correctly is repeated in recent documents from the World Health Organization. We find that existing evidence does not support claims that the effectiveness of SDM as promoted is comparable to the best short-acting modern contraceptive methods. SDM is promoted in ways that may mislead users, by quoting overestimates of effectiveness and providing efficacy comparisons only with selected methods of contraception. We conclude that delivery of any form of SDM should include accurate effectiveness information as well as presentation of the full range of other contraceptive methods, including the most effective options.
2016
Contraception, 93 (6). pp. 492-7. ISSN 0010-7824 DOI: https://doi.org/10.1016/j.contraception.2016.01.006
Community participation for transformative action on women's, children's and adolescents' health
Marston, C; Hinton, R; Kean, S; Baral, S; Ahuja, A; Costello, A; Portela, A. /Community participation can transform health. The Global Strategy for Women’s, Children’s and Adolescents’ Health recognizes that people have a central role in improving their own health. In this article we propose that community participation, including communities working with health services (‘co-production’), will be central for achieving the objectives of the Global Strategy. The paper addresses the role of community participation in promoting health and wellbeing for women, children and young people. We argue that contextualised community participation that is inclusive of under-served groups optimises interventions to improve health. This action relies on participatory approaches that build new relationships across the health system.
2016
Bulletin of the World Health Organization, 94 (5). pp. 376-82. ISSN 0042-9686 DOI: https://doi.org/10.2471/BLT.15.168492
The use of information for diabetes research and care: patient views in West London
Zalin, A; Papoutsi, C; Shotliff, K; Majeed, A; Marston, C; Reed, J. / This study explores the public views on use of electronic health records, finding that people with diabetes would like personal access to such records, and for their medical history to be captured in full. The majority also supported use of their health records for research. The findings support the idea that patients believe in sharing their data for the ‘greater good’.
2016
Practical Diabetes, 33 (3). 81-86a. ISSN 2047-2900 DOI: https://doi.org/10.1002/pdi.2008
Developing patient-centred care: an ethnographic study of patient perceptions and influence on quality improvement
Renedo, A; Marston, C. / Patient-centred care relies on understanding quality improvement from the perspective of the patient, yet patients are often excluded from this process. In this BMC Health Services Research (2015) article, we explore how patients view quality improvement and how they go about improving health services. The article demonstrates how expectations around who the patient is and how they should behave as a recipient of care can influence how patients negotiate their rights to quality care. For genuine involvement in healthcare, it is important to work with patients to reflect on how neoliberal ideas around personal responsibility might influence how and whether patients demand quality care.
2015
BMC Health Serv Res, 15. p. 122. ISSN 1472-6963 DOI: https://doi.org/10.1186/s12913-015-0770-y
Patient and Public Involvement in Healthcare Quality Improvement: How organizations can help patients and professionals to collaborate
Renedo, A; Marston, CA; Spyridonidis, D; Barlow, J. / Given that patient participation can improve healthcare, how can organisations help patients and professionals to collaborate? In this article in Public Management Review (2015), we suggest that the ways citizens can participate in healthcare improvement is often unclear, and we highlight how patients can be supported to make an impact. Our findings demonstrate that patients can influence healthcare beyond just providing their views as receivers of care. We draw on ethnographic work within a UK healthcare initiative and outline how patients can use elements of organisational culture to help them collaborate with health professionals for better outcomes.
2015
Public Management Review, 17 (1). pp. 17-34. ISSN 1471-9037 DOI: https://doi.org/10.1080/14719037.2014.881535 Full text not available from this repository.
Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study
Papoutsi, C; Reed, JE; Marston, C; Lewis, R; Majeed, A; Bell, D. / This article examines claims about the effectiveness of the Standard Days Method® (SDM), marketed as a modern contraceptive method used in at least 100 countries worldwide. Its claim that it is 95% effective when used correctly is repeated in recent documents from the World Health Organization. We find that existing evidence does not support claims that the effectiveness of SDM as promoted is comparable to the best short-acting modern contraceptive methods. SDM is promoted in ways that may mislead users, by quoting overestimates of effectiveness and providing efficacy comparisons only with selected methods of contraception. We conclude that delivery of any form of SDM should include accurate effectiveness information as well as presentation of the full range of other contraceptive methods, including the most effective options.
2015
Bmc Medical Informatics and Decision Making, 15. ISSN 1472-6947 DOI: https://doi.org/10.1186/s12911-015-0202-2
Patient and public attitudes towards informed consent models and levels of awareness of Electronic Health Records in the UK
Riordan, F; Papoutsi, C; Reed, JE; Marston, C; Bell, D; Majeed, A. / Electronic Health Records (EHRs) are key to NHS services because they facilitate health information for both patient care and secondary research. Using questionnaire surveys in London clinics, this project explored public awareness about EHRs and examined attitudes towards different consent models with respect to sharing patient records for healthcare and research. We found that most respondents expected to be asked for consent for their records to be used, and that over half of participants were aware of EHRs before the survey. However this means that many are unaware of EHRs, so education campaigns are needed to increase public awareness and ensure meaningful informed consent.
2015
International journal of medical informatics, 84 (4). pp. 237-47. ISSN 1386-5056 DOI: https://doi.org/10.1016/j.ijmedinf.2015.01.008
Conceptualising the 'community' as a recipient of money - A critical literature review, and implications for health and inequalities
Reynolds, J; Egan, M; Renedo, A; Petticrew, M. / Money may bring about positive changes to health, and giving money to ‘the community’ is becoming more common. This article reviews how governments in different countries give money to the community, exploring how community is conceptualised in this set-up. The article highlights the need for a better understanding of how money affects health and how community is not just a recipient of money, but also something that is constructed through the act of giving money.
2015
Social science & medicine (1982), 143. pp. 88-97. ISSN 0277-9536 DOI: https://doi.org/10.1016/j.socscimed.2015.08.049
WHO recommendations on health promotion interventions for maternal and newborn health
Portela A, Smith H, Marston C. / The LSHTM team provided technical expertise for this World Health Organization recommendation in 2015 on health promotion interventions for maternal and newborn health. The recommendations help countries to establish how best to increase individual, family and community capacity to contribute to maternal and newborn health improvements and skilled care during pregnancy and birth. Recommendations include enhancing community participation in service planning and quality improvement.
2015
World Health Organisation: Maternal, newborn, child and adolescent health. http://www.who.int/maternal_child_adolescent/documents/health-promotion-interventions/en/
Anal heterosex among young people and implications for health promotion: a qualitative study in the UK
Marston, C; Lewis, R. / In this paper we set out to explore expectations, experiences and circumstances of anal sex among young people, through qualitative interviews with individuals and groups in three different settings in England. We found that anal heterosex often appeared to be painful, risky and coercive, particularly for women. Interviewees frequently related anal sex to pornography, but in fact pornography seemed to only make up part of the practice. Other elements included normalisation of pressure to have anal sex, and ‘accidental’ penetration. Our study suggests an urgent need to reduce coercive, painful and unsafe anal heterosex; we want to encourage discussion about shared desire and consent, reduce risky and painful techniques and challenge views that normalise coercion.
2014
BMJ Open, 4 (8). e004996. ISSN 2044-6055 DOI: https://doi.org/10.1136/bmjopen-2014-004996
Spaces for Citizen Involvement in Healthcare: An Ethnographic Study
Renedo, A; Marston, C. / This theoretical contribution to Sociology (2014) considers participation and involvement in healthcare in terms of the spaces in which these activities take place. We develop the idea of “participatory spaces” with material, temporal and social dimensions, and argue that paying attention to these is important to understand the dynamics and impact of patient involvement. We show how participants play a crucial role, drawing on external resources to try and make participatory spaces more collaborative and productive, which helps build a more positive landscape for healthcare. We also highlight how spaces created for public involvement can hinder patients trying to shape healthcare. Only certain social groups can participate, and their influence is limited when they find participatory spaces difficult to navigate.
2014
Sociology. DOI: https://doi.org/10.1177/0038038514544208
WHO recommendation on community mobilization through facilitated participatory learning and action cycles with women’s groups for maternal and newborn health
Marston C, Portela A. / The LSHTM team provided technical expertise for this World Health Organization recommendation on community mobilisation through participatory learning and action cycles with women’s groups for maternal and newborn health. In the report, we set out the importance of interventions in improving maternal and newborn health, family care, community support, and access to skilled care.
2014
World Health Organisation: Maternal, newborn, child and adolescent health. http://www.who.int/maternal_child_adolescent/documents/community-mobilization-maternal-newborn/en/
Effects of community participation on improving uptake of skilled care for maternal and newborn health: a systematic review
Marston, C; Renedo, A; McGowan, CR; Portela, A. / Our systematic review of the effects of community participation on improving the uptake of skilled care for maternal and newborn health examines the extent to which participation improves maternal and newborn health outcomes. We draw on this literature and our own work to set out new theoretical and reporting frameworks to help guide future research.
2013
PLoS One, 8 (2). e55012. ISSN 1932-6203 DOI: https://doi.org/10.1371/journal.pone.0055012
Patient and public views on UK electronic health record systems and their uses: cross-sectional survey
Luchenski, S; Reed, J; Marston, C; Papoutsi, C; Majeed, A; Bell, D. / Implementation of electronic health records (EHRs) remains a challenge; finding out more about patient and public attitudes to EHRs is needed to inform policy. This article explores patient and public attitudes towards EHRs using a survey, and finds that despite previous difficulties with NHS technology projects, patients and members of the public generally support the development of integrated EHRs for health care provision, planning and policy, and health research.
2013
Journal of medical Internet research, 15 (8). e160. ISSN 1439-4456 DOI: https://doi.org/10.2196/jmir.2701
Increasing the use of skilled health personnel where traditional birth attendants were providers of childbirth care: a systematic review
Vieira, C; Portela, A; Miller, T; Coast, E; Leone, T; Marston, C. / Recognising that improved access to skilled health personnel is key to improving maternal health, this study investigates how this has been achieved where traditional birth attendants helped with childbirth. We find that interventions that increase the use of skilled care lead to positive outcomes on maternal health, but other factors in childbirth scenarios need consideration too, including distance, travel, and family preferences in what healthcare interventions are performed. We also find that that there are few high-quality studies that measure effectiveness of these interventions.
2012
PLoS One, 7 (10). e47946. ISSN 1932-6203 DOI: https://doi.org/10.1371/journal.pone.0047946
Survey of patient and public perceptions of electronic health records for healthcare, policy and research: Study protocol
Luchenski, S; Balasanthiran, A; Marston, C; Sasaki, K; Majeed, A; Bell, D; Reed, JE. / The benefits of a national electronic health records (EHR) system must be balanced against public concerns about security and privacy. Our EHR study explores the correlation between personal healthcare experience (including number of healthcare contacts and number and type of longer term conditions) and views relating to development of EHRs. The study design and implementation were successful, with unusually high response rates.
2012
BMC Med Inform Decis Mak, 12. p. 40. ISSN 1472-6947 DOI: https://doi.org/10.1186/1472-6947-12-40
Healthcare Professionals' Representations of 'Patient and Public Involvement' and Creation of 'Public Participant' Identities: Implications for the Development of Inclusive and Bottom-Up Community Participation Initiatives
Renedo, A; Marston, C. / Community participation, particularly “patient and public involvement”, is seen as important to improving healthcare, but what does it mean? In this foundational article for Community and Applied Social Psychology (2011), we draw on UK ethnographic research to explore how patient understandings of their own involvement in healthcare are influenced by relationships with healthcare providers and their expectations about the role of a patient. We argue that patients may struggle to achieve change without support from professionals, and that these relationships must be examined and developed if successful community participation is to happen.
2011
Journal of community & applied social psychology, 21 (3). pp. 268-280. ISSN 1052-9284 DOI: https://doi.org/10.1002/casp.1092
Who we are
Who we are 2 columns
Who we are DEPTH
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DEPTH (Dialogue, Evidence, Participation and Translation for Health)

 LSHTM team members working on community participation for health

Cicely Marston

Cicely Marston
Professor of Public Health

Pippa Grenfell DEPTH

Pippa Grenfell
Assistant Professor

CRM

Catherine McGowan
Assistant Professor

Alicia Renedo

Alicia Renedo
Assistant Professor 

Neha Singh DEPTH

Neha Singh
Assistant Professor 

Sam Miles

Sam Miles
Research Fellow in Social Science

Prima Alam DEPTH

Prima Alam
Research Degree Student

Sam Miles

Shelly Makleff
Research Degree Student

Regina Bash-Taqi DEPTH

Regina Bash-Taqi
Research Degree Student

Elisabeth Eckersberger DEPTH

Elisabeth Eckersberger
Research Degree Student