“The Greatest Missed Microscopical Opportunity?” by Paul Bingham was recently published by the Postal Microscopical Society. It is an excellent account of the discovery of Vibrio cholerae including the works of John Snow.
Within the LSHTM Archives Service we have begun to re-examine the way we work, the stories we tell and the role we can play in promoting different versions of history. This was originally inspired by the work of Lioba Hirsch, a LSHTM history research fellow working on a project entitled LSHTM and colonialism: history and legacy. However, the global response to the Black Lives Matter movement further encouraged us to engage with our collections and archival practices from a decolonising perspective.
Inevitably, the LSHTM archives are steeped in the colonial history of our School. LSHTM was originally founded in 1899 as an institution for the research and treatment of tropical disease, in an effort to improve the health of those working in the British colonies. As a result, the histories preserved within our collections are generally those of white, male, colonial explorers, researchers and medical professionals. While there is value in these stories, and the contributions these individuals made to tropical medicine; they are also reflective of the colonial era in which they were produced and are necessarily informed by the values and attitudes of the time.
As a result of our heightened awareness and research, the team has developed a set of Decolonising the Archives Principles and an action plan which provide a framework for our ongoing work, as we aim to address the bias inherent within the archive, decolonise our collections, and look to create a more inclusive research environment. The principles are as follows:
· Create cataloguing guidelines for decolonising current collections and future collections
· Review current catalogues in terms of terminology/language/emphasis/omissions
· Use secondary sources more critically eg School histories
· Review and amend Archive policies, statements and procedures and consider how these have contributed to the erasure and marginalisation of underrepresented groups
· Tell a different story with our collections
· Acknowledge colonial history and racism within certain collections without appearing to excuse it
· Create opportunities for discussion and critical engagement from a decolonisation perspective
· Create opportunities and work in partnership with colleagues in the School including Decolonising Global Health Group and Centre for History in Public Health on events
· Re-evaluate the content of current regular events such as Open House, Student Open Day and History Day and how decolonising principles/content can be included
· Archives team to undertake training in diversity, inclusion and intersectionality
· Read and study resources provided by groups and networks such as Decolonising Global Health Group, Archives and Records Association and The National Archives in order to continue our professional development in this area
· Ensure that the LSHTM Archives Service is inclusive to all of our users
· Review our recruitment practices for future posts
We have received positive feedback on our approach to decolonising the archives, both internally and externally, and are receiving regular requests to discuss these with archive colleagues in other institutions and to speak at events. We believe our principles can contribute to the wider work of LSHTM, especially in terms critical engagement with our colonial history and the use of archival material in teaching and research. We are happy to discuss our work in more detail with LSHTM colleagues, for further information, please contact firstname.lastname@example.org
LSHTM Library Collection Service
LSHTM Library Collection Service has also been working on decolonising the collections which they have reflected on via these blog posts:
Diversity work has been described as “messy, even dirty, work” involving “sweaty concepts, concepts that come out of the effort to transform institutions that are often not as behind that transformation as they appear to be” (Ahmed 2017: 94). Following extensive consultation over the last 18 months and recent approval of LSHTM’s new Equity, Diversity, and Inclusion (EDI) strategy, it feels like a good opportunity to reflect on this. Certainly, throughout the consultation all kinds of questions were raised which reflect such messiness in EDI work though not in a straightforward way. Some of the questions which I aim to reflect on in this blog in essence focus on firstly, what we actually mean by diversity work, secondly, what (or who) the levers of change are within an organisation and, thirdly, how we can (all) contribute to transformation.
What do we mean by diversity work?
Firstly then, the logical starting point is what we mean by diversity work. Historically this may have been understood as the work of a few EDI practitioners focusing on institutional compliance, writing policies which may or may not be read or developing initiatives which focus on individuals, often based on a deficit model. Thankfully, it is increasingly recognised that diversity work needs to go beyond this. That a compliance or neutral ‘equality of opportunities’ approach does not go far enough as evidenced by outcome inequities – the degree awarding gap and the scarcity of black female professors being a couple of the most frequently cited examples within the HE sector.
It is now generally acknowledged that diversity work needs to involve identifying structural and systemic inequities. This in turn signals the importance of being proactive in closing inequitable outcome gaps through positive action and, for example anti-racist strategies, developed from a structural perspective. An example might be tackling inequities in academic staff promotion. A structural approach would identify whether promotion criteria themselves favour specific groups and recognise that promotion is dependent on career development opportunities and informal sponsorship, often limited in availability. An example of a resulting programmes might be UCL’s inclusive advocacy (also described as inclusive nepotism!) programme or a programme which also requires mentors, sponsors or line managers undertaking anti-racism development.
How do we transform commitment into action?
Through consultation on LSHTM’s EDI strategy, there was fairly unanimously call for such an approach and this is reflected in the resulting commitment and aspirations. Approval of the strategy at Council at the end of March 2021 now moves us to implementation and leads us to the second question I want to reflect on – what (or who) are the levers of change within an organisation – i.e. how do we transform commitment into action. Recognising structural inequalities raises important questions about agency and the possibility to disentangle from the very structures we are trying to breakdown. While not here wanting to get bogged down here in a ‘structure’ / ‘agency’ debate, it is essential to note that as well as identifying structural barriers we also need to identify the levers of and ways to instigate change. It is also helpful to reflect on decolonisation movements within higher education which have been described as an ongoing process which seeks to transform. With this in mind and, again reflecting on and responding to the consultation, we have centred ‘EDI pillars’ as underpinning LSHTM’s approach. This includes effective EDI structures – governance, policies and process – as well as clear lines of accountability.
When thinking about accountability and commitment to institutional transformation, the obvious answer is of course the senior leaders and clearly, they have a pivotal role in ensuring meaningful action. And, as Professor Paul Miller suggests in a recent podcast, moving beyond compliance, requires courageous social justice leadership. Senior leaders acting as executive sponsors can have significant influence – within decision-making processes, through ensuring adequate resources, by positively driving change and acting as inclusive role models are just some examples.
EDI practitioners, or champions, within an organisation also clearly play a key role. To this point, I am very conscious of both the potential role of EDI teams and of the boundaries, frustrations, and limitations. It can be an incredibly slow process and at times feel like a ‘brick wall’ (Ahmed, 2017: 96) of resistance. This ‘brick wall’, however, comes in many guises ranging from lack of awareness, disinterest, privilege to an unwillingness to engage or prioritise or, indeed, where diversity work ‘becomes embodied in the diversity worker’ (Ahmed, 2017: 94) themselves. And in fact, some questions I do get asked reflect this embodiment in the form of a perceived all seeing and knowing ability to pick up on EDI issues across time and space. Seriously though, the EDI practitioner role has aptly been described as having ‘an oblique relation to the institution’ (Ahmed, 2017: 94) reflecting perhaps the important critical nature of the role and we should provide subject matter expertise in terms of identifying barriers and possible solutions. However, subject matter expertise and lived experience expertise often gets conflated. While of course there is overlap, it is essential that a diversity of views is heard which cannot be embodied in a few individuals or their lived experiences. This, of course, makes staff and student networks, as well as more formal committee structures and channels of communication, so important. We need lived experience and diversity of views embedded within decision-making.
How can we (all) contribute?
However, not having specific lived experiences or subject matter expertise does not preclude people from having an active role. And this links to the third and final question focused on here – how we can (all) contribute to transformation. Often the focus has been on diversity training, especially unconscious bias training, but I think that is too passive. While there is limited space in this blog, I think the concept of ‘the single story’ (Abagond, 2009) highlights the need for a more active approach.
As Adiche in her TED talk explains so accessibly, single stories emerge because of (un)conscious or unchallenged biases which create and are created by stereotypes. Those in positions of power and privilege can control what stories are told, how and by who. By recognising the single stories at an institution, we are able to deconstruct common or dominant narratives as well as raise marginalised voices. It becomes possible to identify and challenge these. We can all be story disrupters – by listening, giving space, boosting minoritized voices, and being active allies. In other words, we all have a role to play but especially those in positions of privilege and power.
To conclude if we think back to the example of promotions and career development, there are different roles at play. From senior leaders responsible for a promotions process and defining the criteria, to leaders implementing in local teams and line managers (or mentors) who have a role to reflect on who they are advocating for and ensuring access to career development opportunities. The structural nature of EDI work means that a nuanced and pervasive approach is required with responsibility and agency at all levels, management, team and individual. And consequently perhaps the messiness reflected on at the start of this blog is in many ways part of the nature of the work?
Smartphone screening and referral system significantly increases access to care for people with eye problems
A smartphone-based eye screening and referral system used by community members has been shown to almost triple the number of people with eye problems attending primary care, as well as increasing appropriate uptake of hospital services, compared to the standard approach. The new findings come from research carried out in Kenya, published in The Lancet Digital Health.
The randomised controlled trial included more than 128,000 people in Trans Nzoia County, Kenya, and was carried out by researchers from the International Centre for Eye Health (ICEH) at the London School of Hygiene & Tropical Medicine, Kitale County Hospital, the University of Nairobi and Peek Vision, a social enterprise and close partner of ICEH.
In low- and middle-income populations, limited access to eye services and a shortage of eye care providers mean there is a high prevalence of avoidable vision impairment. Globally, more than 1.1 billion people have a vision problem that is preventable or treatable, often with something as simple as glasses or a cataract operation. Key barriers to care include a lack of access to and awareness of eye services.
The results demonstrate the potential of using mobile health (mHealth) tools such as the Peek Community Eye Health system (Peek CEH) evaluated in this trial, to improve access to care, target limited eye health resources, and manage more patients effectively at the primary level so that hospitals can focus on more complex cases.
Peek CEH is a smartphone-based referral system which includes vision screening, SMS reminders to those requiring follow-up appointments, and real-time reporting to follow the patient journey to see who is accessing follow-up care and receiving treatment.
Community sensitisation (posters and verbal notices in churches and schools) was carried out in both groups, followed by a triage clinic at the linked health facility four weeks later. During triage, participants in both groups were assessed and treated, and were referred on to Kitale Eye Unit (hospital) if further treatment was required. Participants in the intervention group received further SMS reminders about their hospital appointment.
The researchers found that the average attendance rate at triage by participants with eye problems was considerably greater in the intervention group where the Peek Community Eye Health system was used compared to the control group (1,429 per 10,000 participants in the intervention group, compared with 522 per 10,000 in the control group – a rate difference of 906 per 10,000 people). The average hospital attendance rate for those with eye problems was also greater (82 per 10,000 in the intervention group compared with 33 per 10,000 in the control group – a rate difference of 49 per 10,000).
Study lead author, Dr Hillary Rono, ICEH and Peek researcher and Ophthalmologist at Kitale Eye Hospital, said: “My experience as one of very few eye doctors in this rural region of Kenya has shown me that we need more innovative ways to get eye care services to the many people who require them. Our findings show the great potential of using the Peek Community Eye Health system to help ensure that limited health resources are effectively maximised.”
His thoughts were echoed by study co-author, Dr Andrew Bastawrous, Peek Vision CEO and ICEH researcher, said: “This study is incredibly exciting as it demonstrates real systems change. This change resulted in the right people getting the right services at the right location, while the specialist services gained much needed capacity to focus on more complex conditions despite a big increase in demand overall being generated. As populations grow and age, the number of people being left behind is increasing. We are delighted to see that this is an evidence-based approach to tackle the growing vision crisis.”
By Michelle Udoh (LSHTM MSc student in Global Mental Health)
Cultural competence training must be delivered to all persons involved with the delivery of the programme, to minimise the repercussions that racist attitudes and behaviours have on minority ethnic communities.”
The concentrated and collaborative efforts of governments and various stakeholders across the world have led to the rapid development of the COVID-19 vaccine. It has been hailed as one of the greatest achievements in science, laying the foundations for future vaccine development. However, 72% of Black African and Afro-Caribbean groups are hesitant to get the vaccine. While this study suggests that the vaccine has become the object of suspicion and scrutiny, this reluctance is not specific to the COVID-19 vaccine alone. Research has shown that, on average, Black people are less likely to be vaccinated compared to white British nationals. As Black communities continue to be impacted by the disproportionately higher morbidity and mortality rates experienced during the pandemic, and the UK government relies on mass vaccination to usher the country into herd immunity, it becomes increasingly clear that vaccine mistrust needs to be appropriately and effectively addressed.
Taking a ‘people-centredness’ approach to this problem
Originating in Paulo Freire’s theories and works on critical pedagogy, people-centredness strives to recognise the humanity within health systems. It asserts that health outcomes are better achieved when the needs and voices of people are put first, shifting the focus away from the disease itself.
In some ways, the UK has made notable steps towards a people-centred health system. In response to the vaccine hesitancy within minority ethnic groups, the initial approach to the vaccine delivery plan was adjusted. For example, to overcome potential language barriers, communications surrounding the vaccine are now available in more than 13 languages. The updated programme also includes more engagement with community leaders, as well as providing mobile vaccination services to those who are physically unable to access their GP.
Despite these advancements, people-centredness is something that has still not been fully achieved. This is because it requires the government, health care providers, policymakers and everyone involved with service delivery to view COVID-19 through a much broader lens: acknowledging the way that social inequalities, such as poor housing conditions and low income, exacerbate the burden of this disease. It requires an admission that these inequalities are generated by institutions, policies and legislations. And this is something that the UK government has yet to do.
Structural racism remains a significant issue
Many official government publications have investigated and recognised the racial health disparities that have been compounded during the pandemic. Yet these reports lack the critical analysis and depth that predicates the upheaval of institutionalised racism – particularly the most recent Commission on Race and Ethnic Disparities, which claimed that the UK should be regarded as a model for other countries with a majority white population. Without listening to and centring the voices and experiences of minority ethnic groups, there is a chance that these vaccine interventions will fail to wholly tackle the structural determinants that underlie racial health disparities, and consequently uphold vaccine mistrust. We are currently seeing this happen, as Black people in the over 70s category still have the lowest vaccine uptake rate, despite the newly-adjusted vaccine delivery programme.
Historically, health systems in high-income countries such as the UK have repeatedly demonstrated that Black health is not a priority. In the past, this took form in racist beliefs, such as the idea that Black people have less sensitive nerve endings than white people, which was used as a justification for the numerous surgical experiments that were administered on enslaved Black people without anaesthesia. Today, these racist beliefs continue to permeate health systems, perpetuating racial bias of healthcare professionals, neglect of Black patients and increased mortality rates.
This must be considered in the government’s vaccine delivery plan as increased accessibility does not prevent implicit bias and could even expose more communities to these harmful attitudes.
There is so much that needs to be done
A key challenge is that the voices of Black groups are often underrepresented in healthcare research. Pfizer’s vaccine was trialled in predominantly white populations, with 9.8% of participants identifying as African American, compared to 81.9% of their white counterparts. Participatory action research (PAR) provides a solution to this. It is an approach to research that is designed to enable both researchers and participants to work alongside each other to understand a situation that affects the participants’ communities. PAR would also help to reduce racist objectification of individuals within the studied community, as well as allowing participants to be empowered with the knowledge they need to take charge of their health, and the health of their communities. In this context, it involves employing Black healthcare role models, religious and community leaders, as both viable sources of information and trusted liaisons between the government, researchers and hesitant communities.
It is important that these considerations extend beyond the pandemic. Even if vaccine uptake within Black communities is increased, the vaccine will not protect against systemic racism, which is a public health crisis in itself. A people-centredness approach, accompanied by PAR which enables affected communities to create and co-lead policies and programmes is a strategy that should be implemented within the UK’s health system.
This means policies addressing working wages and benefits to reduce socioeconomic inequities and looking at policies surrounding student and staff retention rates of Black and minority ethnic groups. Revision of existing discrimination policies within the workplace, within schools and healthcare need to take place – along with implementation of zero tolerance policies. Additionally, it entails looking at policies that facilitate a welcoming environment for refugees and asylum seekers, allowing them to fully access the national health services with ease.
Healthcare is a fundamental right that everyone should have. This principle should and must uphold, not only the delivery of the COVID-19 vaccine, but health research and policymaking in the future.
Bridging the gap for post-project evaluations of adolescent sexual and reproductive health projects: Guidance from WHO
By Susan Igras (Georgetown University’s Institute for Reproductive Health, Center for Child and Human Development), Marina Plesons (UNDP-UNFPA-UNICEF-WHO-World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP) and the World Health Organization) and Venkatraman Chandra-Mouli (UNDP-UNFPA-UNICEF-WHO-World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP) and the World Health Organization)
Well-designed program evaluation can lead to strong evidence that informs policies and future program planning. Yet, many of the projects and programs that aim to improve adolescent sexual and reproductive health (ASRH) in low- and middle-income countries are often implemented without well-thought-out plans for evaluation. This is equally true for other health and social development programming. In the absence of evaluation evidence, the lessons that programs learn encountering and addressing policy and programmatic challenges are often not extracted and placed in the public arena. The limited evaluations that use pre/post-intervention designs and whose findings are published, then, play an overly dominant role in guiding policy and program development thinking.
Post-project evaluation, which is designed and carried out after projects have ended, offers the possibility to generate learnings about what works (and doesn’t work) to complement prospective studies of new or follow-on projects to bring information and evidence on innovative interventions or approaches that appeared to work well into the public arena.
Guidance from the World Health Organization (WHO)
As outlined in the 2019 WHO Guidance, The project has ended, but we can still learn from it: Practical Guidance for Post-Project Evaluation, evaluators must navigate a range of issues and challenges when conducting post-project evaluations, both contextual and methodological. In a post-project context, project staff with historical knowledge may have moved to new projects and are no longer available to provide information and help interpret findings. Project operations have likely ended so are not observable by evaluators, and participants may no longer be easily contactable. Establishing a comparison group may be feasible, but requires careful forethought with the help of local stakeholders. The ageing of adolescents who were program participants complicates post-project impact assessment; thus, careful consideration is necessary to address maturation and consequent changes in adolescents’ cognition and other capacities and lived experiences in the time since the project ended. Documentation may be spotty; it could lack a theory of change, baseline data, and information on context and other external factors that may have influenced implementation.
What’s an evaluator to do? Our recent Health Policy and Planning article provides an overview of the WHO Guidance by outlining key contextual and methodological challenges in conducting post-project evaluations and illustrative solutions for responding to them. The Guideline is full of case studies and field-tested insights from those who have undertaken such evaluations, addressing a technical gap in this area. Those who engage with post-project evaluations need to anticipate such challenges from the beginning, and be ready, equipped, and willing to navigate them. The goal: evaluators who feel ready and willing to conduct the most rigorous evaluation possible given available resources and project data and documentation.
Why are there so few post-project evaluations being done on promising ASRH and other projects? We believe that the notable lack of post-project evaluations in the field is partly structural; funding agencies that support health and development programming do not typically request this type of evaluation given their project funding cycles. Even when such evaluations have been carried out, there is a gap in their accessibility and thus the distillation of evaluation experiences and strategies that can be used elsewhere. Beyond structural reasons, there also appears to be a reluctance to conduct post-project evaluation because such evaluations often do not lend themselves to the most rigorous experimental design. As such, many methodological purists and funding agencies believe it is not worth the investment. Post-project evaluation thus represents a facet of the debate around what counts as credible evidence.
We believe it is time to revisit post-project evaluation as a valuable and worthwhile evaluation option. The Review conducted to inform the WHO Guidance indicates that it is possible, can be rigorous, and is useful when more traditional evaluations have not been planned or carried out. Post-project evaluation should be done more frequently. The Guidance proposes a way forward:
- Create spaces and funding for such evaluations. Researchers and evaluators, funding agencies, and project implementers should consider and act on the utility of post-project evaluations
- Create demand for post-project evaluations. In the absence of planned evaluation, funding agencies and governments should request post-project evaluations when a particular intervention or approach shows promise but lacks sufficient documentation
- Build and facilitate access to post-project evaluation reports and advice on potential solutions when challenges are encountered. Most evaluation reporting remains in the grey literature; posting evaluation reports on existing government/organisational websites and evaluation clearinghouses will greatly aid efforts to compile experiences and lessons learned.
Q&A with engagement expert Emma Sparrow Part 2: Working creatively with children and young people during the COVID pandemic
This interview focuses on working with young people in a tricky year when it comes to participation. We asked Emma how RCPCH &Us have managed to carry on with engagement activities since Covid…
Adapting and engaging in a pandemic
Emma: We had to look at all of our projects and decide which ones are appropriate to carry on, because we had some that were about very sensitive topics that in-person would have been challenging, and would have needed a lot of support and aftercare – for example complex respiratory illnesses. We looked at those and thought, you know, what, there’s a pandemic going on, which includes respiratory illness, now’s not the time to be phoning people up or talking to them and saying, ‘what do you think about this?’ and ‘what you think about that?’ First we did a wellbeing assessment on our workstreams and agreed which ones we were going to park for a bit, based on a welfare context. Then we spoke about what the missing gap in provision might be, because everybody is going to suddenly do everything the same and we don’t want to duplicate. We actually didn’t go as quickly as some of the other organisations to put out loads of new children and young people-focused information about COVID. What we did was pull together existing information on COVID and put it into a place that was easy and clear for families, parents and children and young people to see.
We wanted to give children and young people a meaningful role and we had to be creative
One of the things that we wanted to do was give children and young people a meaningful role. We asked: what are the gaps? Something that came up from paediatricians was that they were really worried that children and young people wouldn’t be going to their regular appointments anymore, so could we create a child health diaryfor them? So we did, and that’s still getting downloaded now, which is really cool. It’s something a bit more creative for them to write down their questions or things that have happened that are good. A doctor came to us and said ‘we want to thank our children and young people for taking part in the covid effort and not coming in and not playing outside, so can you create an E-card?’ So we created e-cards for thank you and birthdays, and last month 5,000 of those were viewed.
We picked up on children’s and young people’s concerns
As time went on we worked with lots of other groups, virtually. Lots of Teams, Zooms, and all that kind of stuff, to find out: what’s happened for you with health during COVID? What are your appointments like and what are you missing? What’s the information like? We picked up concerns from children and young people about the fact that COVID information wasn’t targeted at them. It was for adults. It also wasn’t giving a positive message about children and young people, so they were seen as the problem rather than part of the solution. There were also significant gaps forming around mental health support. That led us into a couple of new projects focused on COVID, but specifically from children and young people’s points of view. One was about mental health in a crisis, where we wanted to children and young people to tell us where they’re getting their mental health support and where are the gaps. Another one is working with young people to try and get a press conference for young people, because they’re not allowed to ask questions at the government press conferences, you have to be over 18 – excluding a whole group from having their questions heard or having a role. So we’ve been working with other charities to call for a press conference to answer questions from children and young people.
We got young people involved in reviewing evidence on patient experience of COVID
Finally, we realised that there were thousands of studies being done on COVID. The RCPCH had clinicians coming together to review which studies were being published on children and COVID, which got me thinking that actually there was also thousands of studies being published of what young people had said. Lots of charities were asking their children and young people about the impact of the pandemic, and then publishing the results. And we just wanted to give young people a chance to also do what the adults are doing: so if doctors can review scientific journals about COVID, young people can review a patient experience of COVID. We pulled together a group of a small group of young people and over 12 weeks, invited them to look at about 20 different published studies of around 60,000 children and young people’s voices, say, from cancer patients, mental health experiences of young people, children and young people or young carers, across the UK.
And they did what we do in our world – they conducted some thematic analysis, they explored the key trends, they developed them, they then created eight different topics that came up, and they slotted in the data, with a ‘for’ and ‘against’ for each topic. Topics included things like mental health and family dynamics, employment, education. They wanted to make it make a difference to the NHS, and the NHS at the moment are writing recovery plans on how to how to restart the NHS. So they’ve boiled all of that work down and they volunteered over 100 hours doing this project over about three and a half months. They’ve turned the three priorities they have developed for the NHS into posters. The posters include the priority, the problem, the solution, the impact, a quote and some stats. Since launching, the recovery plan priorities have had about 28,000 Twitter impressions. You can read more about the COVID Book Club findings online.
The work has elevated the voice of children and young people – and made people understand they have a lot to say
Emma: We also hosted a debate with doctors about whether paediatricians should be thinking holistically or medically during COVID, because for children and young people, it’s about their mental health as well. That project just feels so different from what we’ve done before. We had to really think through safeguarding and wellbeing, so we didn’t overwhelm the young people who led it. This project very much felt like we were actually paralleling something that was going on in the academic part of the college, and doing the exact same thing, but for children and young people, which felt very different. It has elevated children and young people’s ability, both in the college and in the sector. And it’s really made people understand that they have got a lot to say, and they understand what’s going on, and have a lot to offer.
So on the whole, we’ve managed to find a way or find a tool or find an approach that makes it fun and entertaining and interesting and focused on them rather than the topic sometimes.
The good thing about having to change our work is that we’ve been more connected to RCPCH wider internal projects. The benefit of voice has been seen in a different way. And for us, we had to take that opportunity and run with it – we’ve had 200 new children and young people involved during the COVID pandemic, who have between them completed over 330 hours of volunteering.
Voices are being heard and the professionals are engaging more
Emma: We give advice to people that are starting out on a project or want to talk about PPI [patient & public involvement] and I’ve had so many more requests over the last three months for people that want that advice. And I think it’s because children and young people’s voice is now seen differently. They’re really seen as being integral. There’s so much further we could go, there’s a million other things we could be doing that are even more innovative and creative, and increasing their reach, but you’ve got to start somewhere.
Barriers to participation – too much time online but also digital exclusion
Emma: There’s different barriers and challenges according to which audience you’re coming from. For children and young people, one of the challenges that they’ve said to us is that it’s really overwhelming that everything is online. We’ve really got to understand that because whilst we think we’re doing something fun and exciting, and it’s online for an hour, they’ve already had school online, for some of them health appointments online, mental health appointments, and counseling online. They’ve had zoom calls with friends and family, they’ve tried to keep fit online. And then we’re coming at them with another online thing. Another challenge for them might be: maybe I haven’t got somewhere confidential and private to do online stuff where people aren’t listening in. Or maybe I haven’t got a good device. So we’ve really looked at the challenge and been as inclusive as possible. You can join our online sessions on phone, you can do it on WhatsApp, you can join via video, you can have no video. You can use the chat, or you don’t have to use the chat, you can do it by email if that’s better – it’s all your choice. For us it’s a challenge because we’re having to run four or five different tech options for a one-hour session. But it’s about understanding that not all children and young people want to be on video, not all children and young people have got a device that lets them Zoom. Maybe all they’ve got is a landline, which means they can phone in.
The challenge for participation and engagement is don’t get complacent and think that your games and activities can all work with everyone seeing everything, because they can’t. It’s about inclusion. And that comes from children and young people saying: I might be sharing my laptop with five other people in my house, so I can’t use Teams at the same time, but I will phone in because I’ve got a mobile. We’ve had to really think it through. Another challenge is always remembering whatever you’re talking to children and young people about might be overheard. So don’t put them in positions that makes them disclose stuff that actually might not work well in their family environment. We’ve worked hard to create safe spaces, and to work with each group that we’re talking to, to make sure we understand what their space is like at that moment. Because you can’t start a conversation about money and poverty, when their parents are listening and they might feel that they’re being judged or that the young person feels like they’re judging their parents or living environment.
How can we make it fun? How can we make it inclusive?
Another challenge has been how we can make it feel fun. If you’re using devices for presentations, or for school, we don’t want to be like school on your computer. In the back of our heads we’re always thinking let’s not overwhelm our children and young people, they don’t have to come to the project if stuff’s going on. So we’ve really been conscious about trying to understand what people might be going through. And then to think about things like don’t drink or eat when you’re on camera, because not everyone has got enough food in their house. You would do that in the meeting room, but if we were in the meeting room, we would have given them food and drink. Whereas for us on camera, we’re being really careful about stuff like that. So I think that there’s some challenges. The one that we’re looking at now is where we would normally do community outreach to reach people who aren’t connected to any projects. That will be a challenge and we need to think about how best to reach out to that cohort. But no challenge means that it’s the end and we’re not there yet! It just means that I need to think harder about how I’m going to get past it.
I knew the COVID studies review would give young people a platform that they’ve never had before. But how can you possibly do that safely? If I was in the room, I’m able to see their visual cues, I’m able to unpack things over lunch, I’m able to stop the session and do something entirely different. I spoke to a friend who’s a youth worker and she said: ask the young people, they’ll tell you what works for them, so we did, and they knew all the answers and helped shape the project throughout. In the end they decided that we couldn’t do all of the studies. We found 33 but they said that they could only manage a certain number but that’s cool. At every stage I just kept checking in with them. They will tell us what works for them. It’s co production even in that sense.
What tools can we use for remote working with children and young people?
The first thing I would have to say for anyone about to do is go and talk to your information governance manager. Because whatever you think might be able to be used might not be able to be used for lots of different reasons. One thing we used is Trello , because the young people said for the COVID studies review they wanted somewhere where they could collaborate on documents, but we can’t use Google Docs because of a GDPR issue. I’ve never used anything like that before with young people. It’s so good. They could ask questions and comment on each other’s documents. But they could also see really clearly what was happening at what stage and what they could add to if they had a bit more time. I’ve been trying to find a voting app online, because that is key to so many of our projects, to be able to anonymously prioritise five or six different things. And Menti allows you to do that. You don’t have to put any personal data in, you just get given a code. And then they’ve got lots of different voting tools that you can use. Having a virtual whiteboard is really important as well, like JamBoard. But going back to inclusivity, if we’re using JamBoard, and I’ve got two people that phoned in, I will take a screen grab of it and then WhatsApp it to them so they can see it building. And it’s keeping that in mind as well, to make sure that you’re not inadvertently excluding someone because they haven’t got the same software in front of them.
Overall, I think we keep adapting, learning and changing to the meet the needs of children and young people engaging with us through the pandemic, as we learn new digital tools or approaches and learn from the group. It’s been an opportunity to really relearn everything you have always done and to reflect, update and adapt which has been hard at times but so rewarding when you see the outputs and outcomes.
You can read about the RCPCH & Us collaboration with LSHTM on ‘This Sickle Cell Life’ here.
The Library uses the Barnard Classification Scheme to organise print resources into subject-related categories. Cyril Barnard was the School’s first professional librarian, and he wrote his A classification for medical and veterinary libraries in 1936, amended in 1955. There was an urgent need to update the scheme so that it met collections-specific requirements, reflected teaching and research priorities of the School, and banished the colonial thinking and knowledge organisation of the 1950s. Revisions included:
- Subject headings and descriptions reviewed and removed/updated as necessary, new subject headings added (classes and tables)
- Decolonised language and descriptions used (esp. removal of racist and sexist terms)
- Updated content of classes so relevant for C21st incl. scientific and medical advances, political and economic developments, sociocultural changes, demographics, technological changes, etc.
- Restored relevance to contemporary research (led by LSHTM research and teaching)
- Hierarchical structures/indentations removed where indicated colonial bias/superiority
- Latinised nomenclature still used, but knowledge of scientific classification no longer assumed (e.g. bacteriology, Class J; virology, Class K)
- Table 2 (geographic subdivision): reflects transition to independent states, esp. decolonisation of Africa, Americas, Asia, Oceania. Note: not only British Empire, but also French Colonial Empire, Dutch, Portuguese, Belgium, Italy, Japan. Removal of indentations which signified power structures. Less weighting to USA and UK locations.
The first draft of the 3rd edition of Barnard’s scheme was completed in August 2020. Decolonising catalogue records and re-classifying the print book collection began in April 2021 and to date 1.7k book classifications have been updated. In May, work began on re-classifying the pamphlet collection. New print book acquisitions are being catalogued in line with the 3rd edition.
As a gatekeeper in the transmission of information, the Library can actively contribute to the decolonisation of practices and processes linked to colonialism:
- Targeted decolonisation of catalogue records
- Increased discoverability and accessibility of subjects and resources in collections
- Greater transparency and inclusivity in cataloguing and classification processes
- Open acknowledgement of Western bias in science and knowledge classifications; need to contextualise resources
- Empowered readers who reflect on resources through a critical decolonial lens
- Provide data (collections content, reading list citations) and support in School’s decolonising activities
- Broadening of collection development
University library collections support the teaching and research demands placed by the organisation in which they are embedded. Not only are resources in collections dominated by thought and knowledge creation of the global north, but several library practices contribute to this colonial bias. The nature of library collections has traditionally been seen as the control and classification of resources, leading to a Western commodification of knowledge. Cataloguing conventions often convey a bias to the global north. In addition to the unfamiliar language of library catalogues, readers face colonial bias when searching for resources. New technologies enable unprecedented access to collections but tend to inherit the search hierarchies and language bias of the classification schemes which provide the browsing structures for subject-based information gateways.
In 2019 the Library carried out a review of its collections to gauge the extent of colonial bias. Developments in Collections since 2019 meant significantly more print and online content was available. Another review was carried out in March 2021. Data was collected from Alma (the Library’s LSP – Library Services Platform) incl. publication/distribution information (MARC 260 field) and classification details, e-content package and publisher/supplier information, and internal data sources. Records analysed: 19k print books, 10.6k pamphlets, 700 eBooks, 6k eJournals, 900 print journals.
- All physical and online collections (books, journals, pamphlets) heavily dominated by material published in the global north
- Significant percentage of print resources published before the ‘end of Empire’. Can surmise that the legacy of colonialism would be found throughout print collections.
- Europe and North America had done majority of publishing about their own continent and about other continents
- Africa and Asia had mainly been written about
- Minimal holdings on (or by) Eurasia, Oceania and South America
- Recent acquisitions (print and online) still mainly published in the global north, with this dominance often increasing
The results detailed above led to questions being asked about reading list content. A review was carried out in August 2020, and another in February 2021. Analysis was limited by the underlying metadata available in Alma, but 11.6k citations were looked at from 193 active reading lists. Books with the most citations were published in the UK and the USA, and journals with the most citations were published in the USA, the UK, and the Netherlands. 59% citations were for journal content, with 22% of them published by Elsevier. BMJ Publishing, Elsevier, Oxford University Press, and Wiley had >500 citations each. 10% of all citations were for The Lancet (Elsevier) and BMJ (BMJ Publishing). As with print books and pamphlets, citations appeared to show Africa and Asia being published about, and only a small percentage of content focusing on Eurasia, Oceania and South America.
To conclude, discovering that older resources in the collections were dominated by publishers based in the global north was not surprising. However, finding that recent print acquisitions and electronic resources not only continued this Western control over the production of knowledge and access to it, but had actually increased this dominance, was concerning and thought-provoking.
LGBTQ+ Pride month celebrates all the advances in queer rights in recent times, it remembers the fight for those rights, and prompts us to reflect on how much there is still to do. LGBTQ+ people remain one of the most marginalised groups worldwide. Even in London, with Soho on our doorstep and rainbow flags on our rooves, the queer experience leaves a lot to be desired.
Pride month is also a time to acknowledge that resourceful and creative as we are, LGBTQ+ people could not have achieved the advances we have made to date without our allies. An ally is a person who chooses to align with efforts to improve the circumstances for individuals from a marginalised or disadvantaged group. Being an ally is not just a humanitarian position but also a moral position – if you’re not part of the solution…
The biggest barrier to effective allyship isn’t ignorance or even apathy. Often, it’s the lack of confidence to step into the role, a lack of awareness of what that entails and how one enacts ‘allyship’ effectively. How can you help others live authentically when their experience is so different to yours? How can you roll your sleeves up, put your privilege to one side, and get stuck in making the world a better place for queers?
Thankfully, being an ally is rather straightforward. Not always easy, but straightforward. LinkedIn Learning’s Dr Daisy Lovelace has managed to distil the key components of effective allyship into an acronym that, handily, spells ‘ally’.
Act. Speak up and call out anti-LGBTQ+ language, actions and cultures. A bystander who takes a neutral or non-objecting stance isn’t an ally. An ally speaks up for the rights of LGBTQ+ people even – especially – when there are no LGBTQ+ people around to speak up for themselves. It’s not always big actions that are needed. Sometimes it’s a simple as reminding your team to use gender neutral language or use queer-inclusive images. Sometimes big actions are needed and that’s when we need allies the most. Allies are our bridges from the margins to the mainstream and we need you to act with us consistently and reliably if our progress towards equality is to be maintained.
Learn. The queer experience is tough but it’s also amazing. Standing on the outside looking in on a world you’ll never belong to is a simultaneously painful and liberating perspective. The unique creative viewpoint that comes from such painful liberation is, truly, glorious and cuts to the core of why queer people love who we are. As an ally it’s important to learn about the LGBTQ+ experience, to learn what it means to grow up queer and how that impacts a person now. None of us have grown up unscathed and it’s important to hear our experiences and learn from them if society is to evolve beyond tolerance to acceptance and, hopefully, inclusion.
Listen. With all due respect, LGBTQ+ people don’t need the “straight perspective” on the queer experience. There’s nothing worse than the mainstream telling the margins how to live or what our needs are. At best it betrays a lack of self-awareness but at worst it smacks of the heteronormative arrogance that assumes all queer people want to be like cis-gendered straight people. We don’t – but don’t take my word for it. Listen instead to all the LGBTQ+ people in your own life. Listen and really try to hear who we are, what we’ve been through, and what living authentically means for us.
Yield your privilege. Privilege gives you choice whether to be neutral on an issue or not, it allows you to navigate the world without needing to give a thought to the marginalised groups you’re not a part of. It’s likely we all have some privilege or other and some people may live a life of near-total privilege. The important thing isn’t whether or not you have privilege: it’s what you do with it that counts. Yielding your privilege means you choose not to be neutral and to stand alongside those without the privilege in the first place. It means using your status to help marginalised people be heard and achieve equitable status in society without having to compromise who they are or how they express themselves. Yielding your privilege to LGBTQ+ people means championing queer-inclusive spaces and practices in our organisation while rejecting non-inclusive practices even when you’d receive a benefit from them. It is an act of true allyship, the signature move of a true ally.
Being an ally isn’t always, or even often, easy but it is needed and always appreciated. Pride month is an opportunity for the LGBTQ+ community to express gratitude to our allies – sincerely, thank you – but also to reaffirm how much we need you and how you can best help us. It is a mistake to think the work of LGBTQ+ inclusion is complete even locally, there is still a massive gap to close. This Pride month we acknowledge that gap and ask you to be an ally, to stand with us and help make the world a safer place, an easier place, for lesbian, gay, bisexual, trans, non-binary and gender non-conforming people.
By Aiden Gillan-Bronze
Digital Education Manager
Disability & Eye Health Group, LSHTM