2021 was a busy year, for DEPTH and for researchers and communities worldwide. Here are some numbers that summarise our in-DEPTH work in 2021…
New research project, Routes: new ways to talk about Covid for better health. Focus on Gypsy Roma and Traveller communities, and migrant workers in precarious jobs. This participatory research is funded by the NIHR Public Health Policy Research Unit. The project responds to the Health and Security Agency need for urgent information on barriers and opportunities for improving health services relating to COVID-19 community prevention and response. Check out our brand-new webpage for more information.
Number of organisations and individuals contacted as part of our Routes project work, across mapping conversations, interviews, dialogue sessions and stakeholder conversations.
Major funders for our participatory DEPTH research: UK Government FCDO (ACCESS: Approaches in Complex and Challenging Environments for Sustainable SRHR), NIHR (This Sickle Cell Life) and UK Government NIHR/DHSC (Routes: new ways to talk about Covid for better health. Focus on Gypsy Roma and Traveller communities, and migrant workers in precarious jobs). Across these projects, we are working in dialogue with communities as well as with policymakers, researchers and advocates.
Points in our preliminary guidelines for equitable academic authorship in collaborative health research. We built on good-practice guidelines from the International Committee of Medical Journal Editors (ICMJE), the British Sociological Association (BSA) and Committee on Publication Ethics (COPE) to recognise the specific needs of authors in co-production contexts, including research conducted with non-academic collaborators. You can read our guidelines, for free, here.
Finalist nominations for the Royal College of Paediatrics and Child Health &Us ‘Voice Champion Award’. Dr Alicia Renedo and Dr Sam Miles were shortlisted for their work with children and young people, ‘championing their voices to inspire students and health workers at the London School of Hygiene & Tropical Medicine’. The nominations and shortlisting were run by young people. You can read more on our blog.
Total number of followers of our @DEPTH_LSHTM and our @ThisSCLife Twitter accounts. Check out our feeds out if you’re not signed up for daily updates, news articles and research findings.
Number of days we had to wind up a huge consortium project. ACCESS (Approaches in Complex and Challenging Environments for Sustainable SRHR) was axed without warning by the government in spring 2021. We nevertheless developed exciting outputs to share from our consortium work, available here. You can also read a summary of the project from our partners at IPPF (International Planned Parenthood Federation), here.
Strategy days to practice teamwork initiatives, discuss DEPTH priorities and plan our research strategy.
Total number of canine DEPTH team members. Gus and Ziggy are Sam and Laura’s puppies, while Bertie, Colin and Pepa are honorary doggie members!
We hope you enjoyed reading our ‘Year in 2021’. Watch this space for new developments in 2022…
‘I really enjoyed my time at the 2021 Research Methods e-festival last month, hosted by the National Centre for Research Methods and methods@manchester. Around 80 sessions were held over five days, with more than 130 speakers offering diverse perspectives on the festival’s theme: innovation, adaptation and evolution of the social sciences. The e-festival was brought together by a common interest in interdisciplinary approaches within and across the various social sciences. It was web based and was highly interactive. Attendees could join sessions via live video streams, take part in community discussion boards and network with other scholars.
I was so excited to win best poster at the festival. Currently, I am in the qualitative data collection stage of my doctoral work. I am honoured and grateful for this recognition, and I hope that it draws more attention to studies on the intersection of sexuality and disability.
For many years, people with disabilities have encountered societal stigmatisation and oppression, which often causes them to suppress their sexual lives and sexuality. People with disabilities are often seen as asexual and thought to be incapable of embodying sexual emotions and desires. The transition from adolescence to adulthood is a time of instability, experimentation and exploration in various areas of life, most importantly in relation to sexuality. In the context of China, where this study will be based, 85 million people live with disabilities, and approximately 8 million of them are young people between the ages of 10 and 19 years. Everyone has a right to sexual and reproductive health, and young people with disabilities should not be denied this inalienable right simply because of their disability.
The study seeks to explore young people (age 18–24) with physical disabilities’ qualitative accounts of their lived experiences of sexuality while transitioning to adulthood in China. Accordingly, a phenomenological approach to qualitative research will be utilised that focusses on the essence of the individuals’ lived experiences. Data will be primarily collected through photo elicitation interviews to centre the knowledge, voice, and lived experiences of young people with physical disabilities.
People with disabilities are rarely given the opportunity to share their experiences and desires about their sexuality and intimate lives. Research on disability and sexuality cannot be carried out without the participation of people with disabilities. People with physical disabilities have almost always been represented in a negative light in the visual realm. To enhance the participant-led understandings of experiences of sexuality and disability, I decided to utilise a method designed to ‘give a voice’ to the participants and allow them to talk about their experiences. Specifically, I will use photo elicitation in conjunction with semi-structured interviews to gain a ‘phenomenological sense’ of the importance and meanings that the content of the photos holds for the participants while allowing them to relate and share their issues, experiences and concerns.’
Thank you for your guest blog Weiqi, and we look forward to learning more about your project in this historically under-researched field. Watch this space!
As always, comments are welcome on this blog. You can also contact Weiqi for more information on firstname.lastname@example.org.
The call for papers for a special issue of Global Public Health on ‘(Re)imagining Research, Activism, and Rights at the Intersections of Sexuality, Health, and Social Justice’ offered us the perfect opportunity to crystallise some of the discussions we had and are still having as a research team about health co-production, academic research, authorship, and social justice. We take collaboration and engagement very seriously in DEPTH here at LSHTM, and felt that established authorship guidelines, while excellent benchmarks for ethical research and publication practices, aren’t always fit for purpose when it comes to co-produced work with different stakeholders. As we reflect in our Discussion:
There are numerous structural barriers to full collaboration that have an impact on authorship. The structural barriers to collaboration in general can be revealed in decisions about authorship – they are highlighted in who makes authorship decisions, and who benefits from them, and the structures and conventions that support and entrench inequities and devalue collaborative in favour of competitive working.
In light of these tricky contextual norms, we found numerous questions that needed unpacking: who is an author, and what do they contribute? When does a person’s place in the acknowledgements change to place on the author list, and when should it? How might we think more deeply about academic products and knowledge so that we do not inadvertently help supress voices that are already less heard? These voices are often less heard in academia because of the structures and customs of the academic system, so what impediments can we sidestep while acknowledging we still function within that system?
The result of our discussions is the article, which starts to explore how we might more explicitly pursue recognition of co-produced contributions to academic research. One way to hold ourselves and each other to account in equitable ways of working is through authorship guidelines, which we hope will prove useful as a jumping-off point for others engaged in collaborative work – especially with practitioners, activists, or non-academics, whose contributions and knowledges don’t always fit neatly into academic ‘boxes’. Having reflected on who tends to be disadvantaged by the current systems, we suggest that spending time thinking critically (and sometimes painfully) about these positions and relations can help to scaffold authorship norms that are fairer and more transparent.
You can read the whole piece here, free and open-access. But in this blog I wanted to highlight our authorship guidelines specifically. They are amended from existing excellent offerings of ICMJE and BSA, and move beyond them in that here we incorporate more explicit attention to different stakeholder contributions, and also to co-produced outputs. These are both themes that are long overdue more sustained reflection, and in an academic context of ever-increasing cross-disciplinary and cross-country collaboration and co-production with communities, we hope they prove useful for other researchers out there.
Take a look at our suggested authorship guidelines and see what you think – and reply to this post if you have suggestions for improvements or any other comments:
1. The nature of academic publication processes and authorship conventions should be explained to all partners so that the meaning of authorship and involvement is clear to all parties regardless of university affiliation or discipline.
2. The project research/writing team should list details of expected papers early in any sub-project, including expected authorship and author order (especially first author).
3. The rationale for authorship and author order should be transparent. All authors must make a substantive contribution to the intellectual content of the publication.
4. Non-academic project partners should be invited to co-author the work, with plans in place early on about how to handle suitable contributions. Level of input required must be discussed and agreed early on to ensure clarity on how authorship is allocated.
5. Contributors whose contribution does not in the final product meet the criteria for authorship should be named in the acknowledgements. Named individuals must be informed so that they can withdraw their name if they wish.
6. Where used, translators/interpreters must be named in the acknowledgements.
7. Lead author must draft the paper, with input from other authors, and be responsible for submitting the paper and making any revisions in response to referee comments. The lead author must not submit any paper without the agreement of the named authors.
8. All academic publications should contain a statement about the contribution of each named author.
9. The PI must approve submission of academic articles from the project and must be named as author if criteria for authorship are met.
10. Academic journal publication must be supplemented with publication of findings in other channels to ensure inclusive dissemination (e.g. tweets, policy document, media article, public workshop).
11. The particular needs of members of the team should be considered in arranging publication strategy (e.g. need to gain experience of lead authorship). However, any named author must fulfil the requirements for their authorship position.
12. Sole authorship will not generally be possible or desirable within the project because of the collaborative nature of the work and our recognition that knowledge is co-produced through these collaborative relationships.
13. Consider adding the consortium or project name to all work with numerous contributors who do not meet the criteria for authorship and listing key contributors to the paper in the acknowledgements.
14. In the event of any disagreements or confusion about authorship or author order, please refer to these guidelines within the writing team. If there is still confusion, please request assistance from the PI as the question may need to be referred for a wider discussion and/or the guidelines may need to be clarified.
The Voice Champion Award is a youth-led award recognising adults that go over and above their job role to work with RCPCH &Us to improve services with children, young people and families. The nominations were all anonymised and reviewed by young people from RCPCH &Us, who created criteria and a scoring system, then worked virtually together to review and discuss the fantastic nominations.
Alicia and Sam were not only thrilled to be nominated but also impressed by the youth-led nature of the nomination and award process. Putting young people at the heart of health services participation is key to how we work in DEPTH, so the RCPCH & Us Voice Champion Award feels like a real reflection of the values that we prioritise in DEPTH, too.
This Sickle Cell Life is an NIHR-funded research project that explores the voices and experiences of young people with sickle cell as they transition from paediatric to adulthood, and adult healthcare services.
Project Research Lead, Dr Renedo, says of the nomination:
“This was excellent news for the DEPTH team. We admire the work done by RCPCH &US, and they are a role model for participation, so coming from them, this nomination felt very special.”
Project Principal Investigator and DEPTH Group Director Prof Cicely Marston said:
“I’m so delighted to see Alicia and Sam recognised in this way. They work really hard to make sure our participatory work is inclusive and their work with young people on this project has been brilliant.”
We feel very honoured to be nominated, and thank all of our collaborators and colleagues for their role in making This Sickle Cell Life happen. You can read an ‘Evidence’ brief of This Sickle Cell Life by NIHR here.
We began by asking Emma to explain her role, and how she and her team approach child health and engagement.
Part 1: How do we engage with children and young people and amplify their voices?
Improving child health is more than just paediatrics
Emma: The Royal College of Paediatrics and Child Health (RCPCH) is a charity, but as a Medical Royal College, it helps to support the specialism of Paediatrics. We’re slightly different to other Royal Colleges because we are the Royal College of Paediatrics and Child Health, rather than the Royal College of paediatricians. So it means we can get involved in the whole child health agenda, which is obviously much bigger than just paediatrics. The RCPCH &Us programme is the network for children, young people and families to help inform and influence all of the work of the College. It gives them a place to have their voice and space to say what’s going on for them and what could be done to improve child health services. Our approach is to get them involved in that – it’s not just somewhere to chat, it’s somewhere to actually get involved in and progress social action. For us it’s like a network approach where we try to get as many children and young people and families involved across the whole of the UK at all ages. This year, our youngest person involved is aged four, and we go up to age 25.
We focus on children and young people’s voice and having them involved as volunteers or project members or giving views, but we also recognise that sometimes we will need to involve their advocates as well, whether that’s parents or carers. So we do ad-hoc work with parents and carers, but our primary focus is making sure that children and young people can get involved in the work the college is doing. We also ask what might be some of the challenges in child health, that they’re keen to explore and do something about with us?
People ask what children and young people think about something… We turn the questions into games and activities and take them out on the road
Emma: Our approach is a bit different to most places. At RCPCH &Us, we work in three different workstreams. One is our roadshows and consultations. We get questions from loads of different people about what do children and young people think about something – for example at the moment I’ve got questions on what do young people think about virtual health appointments, and what do children young people think about mental health experiences? What do children and young people think about how their data is used? There’s lots of different questions that come into us. We’ll turn these questions into a set of games and activities and take them out on the road, so that we can go and speak to as many children and young people as possible in as many different areas as possible, with as many different experiences as possible. It’s about us being out there with them, rather than expecting them to fill out a survey or a questionnaire or attend something with people that they don’t know. Our roadshows might operate through schools or youth centers or playgroups or outreach. Or we might speak to children in care groups and carers, or speak to children and young people who are patients: we’ll speak to them outside their outpatient appointments, when they wait to see their clinician, or they might be inpatients.
We bring young people together for day-long ‘challenges’ or for long-term projects
The next approach is challenges. These are ‘tasters’, because children and young people don’t necessarily want to sign away their lives to a project for three years, they might want to just see what it’s like. We’ll bring them together for a project day, where they’ll come in not really knowing that much, and then learn all about a topic, they work with data, and come up with solutions and then present it at the end of the day. This is a bit like the project that we did with you at LSHTM last year – This Sickle Cell Life.
The final approach for us is long term projects focusing on a specific area, with children and young people signing up to join that project team.
Children and young people can participate in a way that works for them
Across our approaches, you could be a young person or child that just wants to tell us something in a conversation, that’s perfect. Or maybe you want to try something you want to do a challenge or maybe you want to do a project, but you don’t need to do all three; children and young people can come in and out as it fits for them. We really want to make it an opportunity for them that they feel is meaningful, and that fits their life rather than fits my nine-to-five work life. It includes lots of weekends and evenings, and lots of doing things in lots of different ways. But for us, that’s important because it means that we get more children and young people involved who might not have been involved before, across different ages and backgrounds.
The other bit that is different is the way that we approach diversity. So we also make sure that any project we’re doing has children and people from three different groups. One is universal, so they’re all just children or young people, because that’s who they are. Then we have a group where they’ve got specific experiences that might change the dynamic for them, for example they’re young carers, or they’re Gypsy travelers, or something that binds them together with an identity. The third group is specialists, who have the health condition, for example asthma. That explains the way that we try to deliver our work by bringing together all three groups to have a full set of views, ideas and experiences.
How do adults respond to your approach, and the way you centre children and young people?
You’ve always got people that are your allies and they’re brilliant for amplifying what’s going on. You can send them something and explain it to them and you know they’re going to get it straightaway and get it out. And then you’ve got the middle group who know that it’s important, but maybe feel stretched – overwhelmed by their work or their role. But when you can engage them in a conversation with an adult, or an organisation or a particular group of people you can see that they get it and they want to do more, but maybe the time is just not right. Those ones stay in touch, and they will get there. Then you have the people that just don’t get it at all. Either they fundamentally don’t want to get it, because they don’t think it should be happening – you’ll have people saying, ‘but why, it’s not [children and young people’s] role to say that we know what we’re doing’. Or they don’t get it because actually they’re at a point of crisis themselves, maybe in their role or their organization where it’s entirely the wrong time.
We just have to really understand that we’re going to have all of those groups, and they’re all important. They all have a role to play in what we’re doing, but the way we approach them will need to be different. So the information we give to allies and the people that ‘get’ it is what children and young people have said, and can you do something with it? Yes. The middle group, we see how we can show them the benefits of what children and young people are saying and then how it will actually support their work. For the ones that fundamentally don’t get it, we tend to talk about the legislation: there’s a statutory duty to do this, it isn’t something that I’ve just made up. It’s really important when you do engagement work that you’re aware that everybody has a different motivation as to how it will land with them, and why they might be interested. But you can learn from them and work to give them what they need. Sometimes it’s challenging but I just see it as an opportunity to share information in a different way. I have to just try harder to make sure that that it meets what they need.
I think you have to be an eternal optimist in engagement work, because everyone’s different, everyone learns in a different way, everyone participates in a different way. It’s all part of a process.
Thanks for your time Emma. Look out for Part 2 of this Q&A next month!
For our latest DEPTH blog we asked LSHTM researcher Kimberley Popple to share her thoughts on NGO-academic collaborations as someone who has recently moved from the former to the latter. Thank you for your insights Kimberley – lots of food for thought!
Evaluation, Evaluation, Evaluation
Back in January this year I made the move from practitioner in the NGO world to becoming a researcher in the academic sector. I wanted to combine the skills I had developed in Public Health research with my knowledge and experience of programme implementation in the field. It seemed to me that there were obvious synergies and opportunities for practitioners and academics to work together to improve global health. Certainly, from my own experience, the projects that I worked on could have benefited from drawing on people with specialist skillsets in data collection and analysis and with the time to conduct literature reviews, produce evidence maps, and test the change pathways that many of the programmes were built upon.
Before moving into academia, I worked on a large portfolio of grants in Sierra Leone as part of the Ebola response. Most of the data we collected was used solely for routine monitoring and evaluation of interventions at the project-level. Its purpose was to track progress against set indicators and to report on spending to funders. As a result, collecting data that could be easily quantified was prioritised, and quantitative data was assumed by funders to show a greater impact than qualitative data. Further, qualitative data tends to fall within the remit of the accountability teams – it is used and relied upon but not as an indicator of impact. In the Sierra Leone scenario, success of an intervention was often measured by a high number of medical consultations or a large number of attendees at a meeting, rather than focusing on data related to quality of services or patient satisfaction. I remember one example of a gender-based violence (GBV) project in Freetown which was categorised by the funder as “underperforming” as the target number of survivors had not been reached. The fact that that the women who had been reached had received high quality support across the GBV spectrum of services was seemingly less valued.
In Uganda, I worked on a maternal health project which introduced a client-exit survey for women to participate in at the hospital after receiving maternity care. However, the survey was administered by NGO staff who were working with the marginalised populations, and in close proximity to the medical staff who had provided their care. There was little recognition of the power imbalance between interviewer and interviewee or the desirability bias that might be present as a result of the women’s fear of negative repercussions from medical staff.
Evaluations were often seen as a tick-box exercise for donors and their design was fairly rudimentary. By the time the evaluation report was written, the programme had already moved onto the next phase to align with strict funding cycles. This left little room to reflect on lessons learned and engage in a process of iterative programme design. A recent systematic review has highlighted the lack of evaluations conducted on epidemic responses in humanitarian and low-income settings, with only one tenth of responses evaluated and with large gaps in quality, content and coverage of evaluations, limiting the ability to improve future responses.
Is the landscape changing?
Over recent years, the international development sector has intensified its focus on evidence-based programming and evaluation. Many NGOs have increased their research capacity with dedicated departments and research staff (for example Airbel Impact Lab at International Rescue Committee, and the Response Innovation Lab at Save the Children), giving them the expertise and space to test out new formats for implementation, and to ensure programming is based on the latest evidence of what works.
New funding streams have emerged for research in the humanitarian field, such as Elrha’sR2HC programme, and there is donor pressure to evidence learning and use data for decision-making. Donors like the UK government’s Foreign, Commonwealth & Development Office (FCDO, formerly DFID) have developed more in-depth guidance on how to develop and use evaluation frameworks to measure impact and ensure accountability, with requests to include qualitative indicators in logframes.
What can academia bring to the table?
So, is there still a role for academics to play in supporting the work of NGOs? I believe there can be, particularly in the evaluation of complex interventions. Universities train public health professionals who often go on to work in the NGO sector. Expert knowledge of process and outcome evaluations can be drawn upon to test change pathways in Theories of Change. Systematic reviews can be performed by academics with fewer time and funding constraints, reducing the need to reinvent the wheel every time to search for the latest evidence. As academics, we can add our voice to campaigns as advocates of change. And the humanitarian health sector can harness specific skill sets in conducting clinical trials and in disease modelling. My sense is that as both sectors continue to develop and evolve, it will be important to continue to reflect on the value of academic-NGO partnerships for global health.
The COVID-19 pandemic is requiring home-testing in large numbers, and this process raises questions about the ethics of informed consent. In our latest blog, DEPTH member Dr Catherine McGowan reflects on a route to informed consent and suggests how governments, healthcare groups and institutions can maintain informed consent in a time of crisis.
A key step in any research project involving human participants is gaining informed consent. COVID-19 has disrupted research work around the world, and it will continue to do so for many more months. In this ever-changing pandemic environment, important research must continue. However, this work still requires researchers to think carefully about how best to obtain consent remotely.
Researchers carrying out various population surveys are sending COVID-19 tests by post and encouraging people to self-test. Self-testing kits are a good example of a process that reminds us of the need to think about consent. Research participants must provide informed consent to participate in research, particularly when it comes to population surveys involving biological sample collection. Information governance in the European Union and the UK has changed considerably with the implementation of the General Data Protection Regulation (GDPR), which does not allow for presumed consent in most cases – so when it comes to a process like home testing, for example, the data gathered cannot legally be collected or processed without gaining explicit consent from research participants.
In 2017 we carried out antibody testing amongst non-Ebola infected healthcare workers (HCWs) who had returned from West Africa following the 2014/16 Ebola outbreak. We posted test kits to HCWs throughout the UK and the Republic of Ireland, with samples returned via post. When it came to getting informed consent, face to face consent was not feasible, we could not waive consent and nor did we feel comfortable presuming consent. In the interests of best practice we also wanted to make sure that participants had all of the information they needed in order to consent fully – and be able to reach us, the project PIs, with any questions they might have. Ultimately, we decided to recruit participants via email but first they were asked to work their way through the consent materials electronically, and to explicitly indicate their consent. Once participants had consented they were asked to complete a short questionnaire and to provide their postal address so that we could send out the test kits. At the conclusion of the study we emailed participants to let them know the results of their antibody test and included a link to a survey asking about their experience of consent. Our findings, as well as a description of the design of the consent process is described in our paper which you can read for free in Journal of Public Ethics. We asked participants how much of the consent material they read, how informed they felt and if they preferred online to traditional face-to-face consent.
The results were very interesting: Participants indicated a high level of engagement with the consent materials, with 67% reporting having read all and a further 20% having read ‘most’ of the materials. All participants indicated feeling completely (78%) or mostly (22%) informed about the purpose, methods and intended uses of the research, as well as what participation was required and what risks were involved. Overall, participants reported an overwhelming preference for online consent. Their longer free-text responses suggested that they were predominantly attracted to the convenience of online consent, including the leisure to read the consent materials several times, and the ability to engage in the consent process at a convenient time/place. Free text responses also supported online consent for our survey, but participants indicated that were the study more complex or were it a clinical trial they would prefer to have a face-to-face element.
Obtaining consent in lockdown
What can this study tell us about the research based on COVID-19 home-testing that is happening now? Well, it is our hope that as researchers aim to continue their work online, they give careful thought to what informed consent is in the current circumstances. Our paper describes how to obtain informed consent electronically and in a way that we have found to be acceptable amongst our research participants, but this might not be appropriate in all cases.
We also hope that Public Health England puts in place a robust framework for the pandemic to ensure adequate consent is still sought and obtained for any research. It is in times of crisis that abuses may be allowed to happen. Even with the best intentions, researchers may act expediently and may overlook best practice in their hurry to conduct the research and obtain results. In disaster settings, corner-cutting in ethical research practices are more likely, but this is also when participants are most vulnerable and may feel less able to challenge research practices that feel inappropriate. Our own study has shown that there are easy and acceptable solutions for obtaining informed consent. We hope that researchers currently developing population surveys using self-testing methods will give some thought to developing acceptable solutions to obtaining informed consent. We must continue research activities without forgetting our professional, ethical, and legal obligations to those who make our work possible.
Our latest blog by DEPTH researcher Dr Sam Milestakes a break from coronavirus research to explore the themes of co-production and collaboration in our recently completed projectThis Sickle Cell Life. Read on to find out more…
Regular readers of this blog will know that our work in DEPTH (Dialogue, Evidence, Participation & Translation for Health) includes thinking about how we involve different communities in health research. Today I’m writing about This Sickle Cell Life, a recently completed qualitative research project that talks to young people about their lives and experiences of having sickle cell disease. I should add that some of what I’m writing about is based on team discussions and reflections. We’re writing this up in more detail with our co-authors and I’ll keep you posted on how it progresses.
I got involved in This Sickle Cell Life with Professor Cicely Marston and Dr Alicia Renedo when I started here at LSHTM in 2017. Funded by the National Institute for Health Research (NIHR), the project explores how young people experience transitions in moving from paediatric to adult healthcare services. This includes for example how our participants experience GP surgeries, scheduled hospital visits or unscheduled (i.e. emergency) trips to A&E. We also explored the personal and day-to-day experiences of young people living with sickle cell disease. We were aiming to answer questions including: What is the relationship between a young person with sickle cell and their doctor, and how does this change if you move away from home for college, university or work? And why do young people with sickle cell sometimes delay going to the emergency department when they have a sickle cell pain crisis? (Read this excellent overview by Sickle Cell Society for more on pain). We then cast the net wider to think about family, school, sex and relationships.
Our aim was to offer a much-needed sociological picture of how a young person with sickle cell navigates their life and their future, to mirror the more extensive clinical and quantitative research that has been published about the condition. That’s not to say that sickle cell research is exactly a crowded market – Professor Simon Dyson, who has made brilliant sociological contributions over many years, has rightly noted the lack of sickle cell research compared to other chronic health conditions, and how social, economic and ethnic determinants play into this marginalisation:
‘…impairment is primarily socially created by environmental factors, consumption patterns and accidents and not by genetic disorders.’ (Dyson 1998: p.123).
Fieldwork was already expertly wrapped up by Alicia when I joined the project, but I got to be part of the really interesting results analysis, discussion and dissemination work, including an engagement event with the public which in turn led to some fantastic community projects of its own. You can read more about the work here, but what I’m going to focus on in this blog was the role of ‘co-production’ in the project: put simply, that means working with different ‘kinds’ of people to produce research that is a collaborative effort. Co-produced research recognises that expertise is held by a range of people rather than only the ‘usual suspects’ (in this scenario, academics or clinicians). Advocates of co-production hope that the research findings developed are more rounded-out and take into account the ‘embodied’ knowledge of people who are living the journey themselves (see Renedo et al., 2018 for more).
One of the distinctive features of This Sickle Cell Life was that it was co-produced with two young sickle cell patient experts and a sickle cell parent/carer expert from the outset. All three have extensive knowledge of sickle cell and life with sickle cell, and already advocate for healthcare improvement in their own lives. They were involved long before I was – right from the project planning and application stage before funding was granted, in fact. They were also paid for their time. Partnering with these three experts added a very important facet to the research we conducted. There is a lot of talk in public health research about ‘PPI’, or patient & public involvement with healthcare. In the NHS, the motto ‘nothing about me, without me’ represents one way in which patient involvement is rationalised. Funders and grant-giving bodies are (rightly) keen to see meaningful involvement with the communities (sometimes also called beneficiaries) who are most relevant to the research being done. Co-production can also shine a light on the power imbalances that often happen in a traditional researcher-participant relationship in social sciences research which can reinforce all sorts of unhelpful hierarchies and prejudices.
In our project, we agreed with our patient experts that it was particularly important that their voices were heard, because they contributed expert knowledge of their bodies and their own health conditions, as well as helping us at the findings stage of the research, highlighting themes that were most pertinent to improving healthcare environments for people with sickle cell. We further argued at every stage (to colleagues, institutions, sceptics – anyone who would listen basically) that our involvement processes needed to be considered, balanced, and properly thought-through – lip-service involvement doesn’t help any party and it is not in the spirit of meaningful participation. We wanted to amplify less-heard voices and hear stories from our patient experts and carer experts because their analysis of their own, and others’, experiences of sickle were invaluable. Our collaborators’ input contributed a different side to more traditional qualitative research; as a team, we worked to interpret the data and draw out the implications for practice.
The highlight of the project for me was not just the valuable findings that came out of 80 interviews with young people, which are research outputs of their own brilliantly managed by Alicia (which you can read for free here), but the process of co-producing research with patient experts and carers. I have discussed the idea of co-production a bit in my own digital technology and sexuality research, in which I (loosely) explored the co-production by both researcher and participant of a safe discursive space for covering sensitive topics in sex and sexuality in fieldwork research (which you can read for free here). But This Sickle Cell Life made co-production central from the start and throughout the full four years of the project; it is clear to me only now how truly different this way of working is, and the value it adds.
The winding road to publication: How expertise is framed in academia
What was interesting was how our co-produced research outputs were received by peer reviewers for academic journals. Having learnt so much from our patient experts about how their experiences reflected what our results showed us about participants’ experiences, we invited them to write an academic article with us. We did this by discussing study findings with them and inviting them to discuss these themes with us as I took notes and recordings to write into a larger discussion. It was a long process, involving lots of conversations in cafes, on the phone and by email to coordinate our different experiences and expertise.
However, upon submission several reviewers critiqued what they felt to be overly personal accounts of sickle cell. Even having noted our co-produced efforts and celebrated this ethos, reviewers still picked out patient expert passages that they felt were lacking objective research – questioning the expertise of our co-production partners who were best placed to be reflecting on the study findings. Where our patient experts told us how their experiences chimed with those of the participants when it came to hospital care or chronic ill health or family issues, and I wove these reflections into our discussion section, reviewers felt this expertise was anecdotal or somehow unscientific – as if the rest of the qualitative dataset was by contrast unobjectionable or markedly positivist, when of course it wasn’t. We were in the paradoxical position of amplifying the expert knowledge of people with sickle cell and yet that knowledge being somehow too ‘real-life’.
We were in the paradoxical position of amplifying the expert knowledge of people with sickle cell and yet that knowledge was somehow too ‘real-life’.
I have sympathy for the reviewers, too, because despite the best will of a whole range of actors to more actively incorporate a range of knowledges into academic publications, establishment traditions prevail. This clashes with what I guess I would call the out-of-place-ness of equitable authorship, which synthesises a range of voices, including those which are non-establishment and may contribute in different (often refreshingly different) ways than are standard. None of this is to say that it wasn’t a valuable experience, but it was a long one. Critical Public Health and its editors did support our approach, with suggestions back and forth, and published what we hope will be the first of several co-produced articles (read it for free here).
That leads us to one of the curious tensions in this kind of work – our collaborators are clearly experts, but they’re not academics. Does that matter? Well, it shouldn’t – especially given the UK NHS drive to centre patients and public at the forefront of research and healthcare involvement. And yet the process of publishing papers with our patient experts was not straightforward. It required different ways of working than what we were all used to, and different approaches – and that’s before we consider the lengthy journey we then had publishing our co-produced academic article, where roadblocks re-emerged.
I came to see that the key contribution of any author is their contribution to ‘the work’, and this can go far beyond typing up results or making an argument for changing UK healthcare practices in an academic article. Instead, it is about having conversations – in ways that ensure equity between all parties – and then using academics’ toolkits to package this co-produced knowledge whilst maintaining its integrity. For us, a more liberatory outcome would have been yet more unconventional than the finished piece. Maybe this would have taken us further from what makes an academic article an academic article. Well, you might argue, if you really want to publish more collaboratively, perhaps a different format would be better suited – a commentary, or an editorial, or a blog – and we are in the process of doing all those things. But this argument overlooks the ostensible openness of academic publishing to co-produced and public involvement endeavours. We’re all supposed to be embracing that ethos…aren’t we? There is work to do, it seems, in lining up expectations with conventions in co-produced research outputs.
As for the research itself, it’s been a fantastically valuable project for better understanding the health and social conditions of sickle cell. There are definitely ways we can further improve on our approaches to co-production for next time. It’s also not to say that our co-production work was straightforward or easy. On the contrary, it required constant communication between all parties to stay on the same page. But that ongoing relationship, and that time taken to gather views from around the table really ought to be how we always operate: with care, consideration and dialogue between all parties at all times. We came to define it as ‘slow co-production’, which I’ve blogged about before (we lay out what we think are its strengths in thisarticle). It is only within the tight parameters of contemporary academic research contracts that this valuable, lengthy process feels like a luxury. I should add that the NIHR were very supportive of our approach and helped us build into our budget money to support exactly this kind of process, and they also gave us a generous timeframe in which to generate all this co-produced work.
It also encourages us to question what constitutes ‘knowledge’, who or what entities ‘hold’ knowledge (and you see it performed nowhere more starkly than in healthcare settings), and of the power imbalance between researcher and participant. Now I think twice before internalising the status quo of privilege and position in knowledge-holding (and knowledge exchange). I think more about how practical experience informs knowledge – or is overlooked by systems of knowledge and knowing – and who actually gets a seat at the table in supposedly collaborative endeavours. Cicely and Alicia have written about all of this and more, and you can read this work here,hereandhere.
Pursuing co-production helps us recognise the importance of prioritising equitable social science research that values all voices equally and recognises a range of expertise, rather than relying on the (often colonial, socially-structured, privileged) expertise bestowed – and often still prioritised – by academia.
This Sickle Cell Life was funded by the National Institute for Health Research Health Services and Delivery Research Programme (project number 13/54/25). The views and opinions expressed therein are those of the author and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS or the Department of Health.
Recent social media debates have shown that misunderstandings about ‘biological sex’ are common. In our latest blog, DEPTH Director Professor Cicely Marston discusses how simplistic ideas now circulating about biological sex miss the mark – and why it matters.
Isn’t it the case that biological sex can only be binary – that you can only be biologically male or biologically female? And why does it matter anyway? In this blog I’ll discuss why biological sex is more complicated than many people think.
A popular way to explain the concept of ‘gender’ is to say that ‘sex is biological and gender is social’. This can help get the idea across that gender is ‘social’ – that is to say, it is something created by people, involving things like expectations, behaviours, and beliefs about masculinity and femininity. It’s true that gender is indeed social, but this leaves the idea that ‘sex is biological’ unexamined – and in some aspects in fact, ‘biological’ sex is social too.
But how can ‘biological sex’ possibly be in any way social? The basic thing to understand is that categories and labels – even words themselves – are social. For instance, if I call something a table you will know roughly what I mean. The table is real, material, and can vary: for example being made of different materials, in different sizes, and so on. We agree as speakers of the language roughly what we mean by “table”.
All the word “table” reflects is what we have decided, collectively over time, counts as a table. E.g. a table generally has legs, but not always the same number. It might be raised high off the floor, or be low. Through usage, all that diversity comes to be labelled with the same word “table”.
When differentiating tables becomes socially important, language adapts, and the word “table” might be qualified (“occasional table” or “coffee table”).
In the same way, “biological sex” is what we conceptualise, as a society, as “biological sex”. It is a label used to describe a collection of indicators, biologies, and anatomies. Indicators (e.g. chromosomes, gametes), that have changed over time and with scientific discoveries. It’s not a failsafe way to know what a particular individual’s biology is in every case.
This is why we can say that the biological sex binary is socially constructed– biological sex as male or female is a shorthand for categorisations of the material world that we find useful.
To take the most obvious example, many people see a “biological” binary in genital shape, yet this is an imperfect heuristic. (Content warning: genital cutting mentioned below). In many places, babies are assigned to the category “male” or “female” based on the shape of their genitals at birth. However, individuals may have a genotype that appears to “contradict” their assigned sex, or that in other ways doesn’t match the simplified XX vs XY that we learn at school. Unsurprisingly, people who assert that biological sex is binary seem to offer varying and sometimes contradictory biological markers that they claim divide everyone in the world neatly into two categories. Is it chromosomes? Gametes? Testosterone levels? Genital appearance? Nobody seems to be sure.
“Biological sex” is a construct that helps our highly gendered society to categorise and label others.
“Biological sex” is a construct that helps our highly gendered society to categorise and label others. But why bother? The sex binary has major social significance (so much so that children with genitals less easy to read as male/female may be subject to genital cutting), and people who do not present in line with the sex they were assigned at birth, or who are not read as clearly “male” or “female”, continue to experience social disapproval, discrimination, and violence.
The idea of “naturalness” or the intrinsic/immutable binary nature of “biological sex” is important socially too. If the binary is “natural” or “biology” there’s nothing we can do about it, and departures from the typical become “disorders” rather than simply variation. Similar ideas also underpin arguments that differences (and inequalities) between men and women are biologically determined and so cannot be overcome.
The biological sex binary oversimplification does particular harm when it is weaponized to vilify or discriminate against individuals or groups who are deemed not to fit such as people not easily read as “female” or “male”, and when backwards logic is used to try to gloss over discrimination and vilification by representing it as simply a consequence of the “natural” order of things.
To summarise, “biological sex” involves not only the material but also the social. The crucial point is that the idea of a strict and immutable binary is socially constructed. The concept of “biological sex” is not inevitable because we have bodies, it is a response to how we see those bodies and how, as a society, we want to divide them up into categories. So the whole argument about gender and sex binaries is not an argument about science – however much people want to present it as one – it is an argument about classification and how we as a society choose to label people. Biological sex is social as well as material: and that matters.
What do you think? Thoughts, questions – and answers – are, as ever, welcomed in the comments section below this blog. (NB: If you’re reading this article on the DEPTH blog mainpage, click on the title of this post and comments will open at the bottom).
The short course consisted of two full day workshops (day 1 Professor Pranee Liamputtong and day 2 Dr Alicia Renedo), which included a combination of mini-lectures, reflective discussions and participatory group work by students from Kyoto University. Research degree students from LSHTM also attended the course at Kyoto and presented some of their own participatory research projects
Professor Liamputtong from Western Sydney University delivered an engaging session on the theory and methods of PAR (participatory action research). PAR emphasises involvement of participants in the research undertaken and encourages participants to shape the research undertaken. The day started with an inspiring introduction into the philosophy behind PAR, which drew upon the pioneering ideas of Brazilian educator Paulo Freire. Students learned about the importance that Freire’s work has had on the theory and practice of participation for social change and health improvement. In particular, Professor Liamputtong challenged students to think about how Freire’s concepts of ‘radical love’ and ‘conscientization’ can contribute to more equitable research. This is a type of research that challenges the status quo by engaging ignored and silenced voices and addresses the problems marginalised communities identify as central to their everyday life.
Professor Liamputtong contextualised PAR within the wider debate about decolonising research methodologies. She drew on Linda Tuhiwai Smiths’ work to make an excellent case for the need to stop conducting research that takes away the knowledge and livelihoods of communities and suppresses their identities.
This introduction to the theory and philosophy of PAR was followed up by an overview of different creative PAR methodologies, from body-mapping to photovoice. We also learned about the personal skills PAR researchers need to develop; reciprocity, self-reflexivity, respect, self-awareness, humility, and compassion amongst others.
On the second day, Dr Renedo encouraged students to think critically about participation in health. She gave on overview of the body of work she’s developed with Professor Cicely Marston focused on understanding how community participation and patient involvement in healthcare research works in practice: what works, why and how? She started the day with an introduction to work they have developed on theorising participation and using participatory approaches in health research. Their work has addressed important evidence gaps on participation in health by developing critical theory on undertheorized aspects, which are also neglected in practice. In this first session, students learned about the importance of space in making participation successful and inclusive, and about the role of temporal, social and material aspects of participatory space in influencing participants’ ability to negotiate their rights for quality health and to mobilise for better health.
In this session, students also learned about how social relationships and research practices at the core of participatory research shape the identities of participants, that is how participants see their role and capacity to influence. Dr Renedo closed this first session with a discussion about the social production of new forms of knowledge through participatory processes; what happens when the technical knowledge of researchers and healthcare providers interacts with the knowledge brought by communities?
In the second session, Dr Renedo stimulated group discussion around the guiding principles for participatory research. She introduced students to guiding principles for ensuring participatory research is ethical and inclusive to deliver bottom-up solutions for the communities we are working with. Students were tasked with planning a participatory research project with vulnerable communities. Before they started, Dr Renedo warned students about some of the potential risks of participatory research, for example, community disengagement, mistrust and reinforcement of pre-existing inequalities and power hierarchies.
In the afternoon, Dr Renedo presented a case example of DEPTH participatory research project co-produced with sickle cell disease (SCD) patient advocates (patients with SCD and carers of patients with SCD). Her session was followed up by presentationson PAR conducted by LSHTM research degree students: Asmae Doukani, Stefanie Fringes and Chris Obermeyer.
Asmae Doukani gave a talk about her participatory research journey and reflected on her personal learnings about meaningful user involvement in the development and evaluation of digital mental health interventions. Chris Obermeyer gave an overview of his grassroots participatory research involving communities in improving PrEP promotion in Ukraine. Stefanie Fringes helped students think critically about how to do participation with young people as research partners in the context of HIV in adolescent health.
Alicia would like to give a special thanks to Ayako Kohno and Teranee Techasrivichien, from Kyoto University School of Public Health, for inviting us to participate in the workshop. She adds:
“I was truly inspired by all presentations and by Kyoto University students’ critical insights into participatory research. The workshop stimulated truly collective learning. I look forward to continue conversations and see how the students can draw on the learnings from the two-day workshop in their own research.”
A recording of the two-day workshop will be available via Kyoto University’s website. We will add a link to these resources when they are ready.