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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 LSHTM team working on community participation and dialogue.

Updates

Find below the blog posts and recent news about DEPTH:

Updates List Block
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.

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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
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
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
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
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

CRM

Catherine McGowan
Assistant Professor

Alicia Renedo

Alicia Renedo
Assistant professor

Sam Miles

Sam Miles
Research Fellow in Social Science

Cicely Marston

Cicely Marston
Associate professor

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Prima Alam
Research degree student

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Shelly Makleff
Research degree student

Regina Bash-Taqi

Elizabeth Eckersberger