Exploring barriers to equitable participation in health research among ethnic minorities: A co-production workshop

By Eleanor Mason, on 16 November 2022

Written by Camilla Rossi, Jo Blodgett, Chandrika Kaviraj, and Aradhna Kaushal 

The way we research health matters. Despite a growing awareness of stark health inequities across the UK, most health research does not involve people from ethnic minority groups. This under-representation not only hides the experiences of those who are often most at risk of poor health, but it also prevents appropriate solutions from being developed. Through a UCL Research Culture Award, we organised a co-production workshop in London to better understand what might prevent equitable participation in health research and how to start addressing these barriers.

The workshop was held in June 2022 at UCL and brought together a group of six participants who identify as ethnic minorities. The activities developed around two main sessions: in the morning, the group brainstormed potential barriers to participation and discussed when they might emerge; the afternoon was dedicated to considering how they could be addressed, discussing the practicalities of involving people from different ethnic minority communities.

The project was informed by the notion of ‘knowledge co-production’. Through this approach, the researchers step back from their traditional role as ‘experts’ to make space for lived experiences as central forms of expertise. One of the ways we did this was by designing the workshop in collaboration with a member of the public, Chandrika Kaviraj. Chandrika reviewed and informed our initial proposal and is now overseeing the analysis and communication of the findings.

What is preventing equitable participation in health research?

Drawing from their families and their personal experiences, the participants identified a variety of potential barriers which we grouped under three main categories.

Lack of trust in institutions and their representatives emerged as a key underlying theme.  Participants discussed the effects of “previous negative experiences”, “fear” of institutions and of the repercussions of getting involved, and shared a general perception that medical professionals and researchers are not trained to engage with racism and the trauma it causes:

“My mom would have so much to add to and learn about health research, but she is so deeply scared of institutions because of how she has been treated in the past.” (British Asian, male, 18-29)

Language and socio-cultural obstacles experienced within the health sector were identified as often concurrent, leading to a difficulty in communicating and being heard from both a linguistic and cultural point of view. This can contribute to a sense of “being invalid”, “incorrect”, and “uneducated”:

“Due to language barriers, due to feeling like it is something we’re not a part of, and due to doctors not understanding the cultural context … this leads to an inability to express.” (Black British, female, 40-49)

Practical barriers contribute to people perceiving health research as “not doable” or “relevant”. These can include lack of time and childcare needs, as well as the use of technology and the location of the study.

It is important to stress that the term ‘ethnic minorities’ includes a highly varied population, with ethnicity being only one of the many social categories shaping personal and social identity: different barriers might be more or less relevant to certain individuals or communities depending on factors such as gender, age, disability, or socioeconomic status. Engaging with this diversity and fluidity of experience is essential to avoid simplistic representations which may end up reinforcing the very barriers we are trying to dismantle.

What are the possible solutions?

Participants agreed that all barriers are exacerbated by researchers’ lack of knowledge and engagement with communities. This leads to research methods that do not fit with people’s lived experiences and needs.

The group developed four main recommendations.

1. Tap into existing community structures

Researchers need to go beyond “traditional means” to make the research meaningful and relatable to people. Engaging with existing community structures and “physically going out there” was highlighted as essential. When the researcher has no existing links with a particular group, the involvement of a community member in the design and development of the project was recommended.

“You need more of a ‘community development mindset’: use the local authorities and look for places where people are already involved. Go out there.” (Black British, female, 40-49)

2. Be transparent about the research aims, objectives, and challenges

The aims and objectives of the research needs to be communicated with clarity and transparency from the beginning: how can the research add value to their communities, families, society? What impact could it have and what are the limitations? Participants agreed that being transparent about the potential challenges involved might help to build trust, making researchers easier to relate and resonate with:

“These communities can smell fraud from miles: be honest about the barriers involved, we can relate to your constraints! If you manage people’s expectations, they will respect you more.” (Black British, male, 50-59)

3. One size does not fit all: make the project flexible and adaptable 

Investing time and resources into tailoring the research process was highlighted as essential both to encourage people to participate and ensure that they are not forced to drop out. Participants recommended advertising the study through different means of communication, both online and offline, hosting the study in safe and inclusive spaces, dedicating ample space for questions, and being ready to allow time, space, and support for participants struggling to commit for personal reasons:

“Show support and availability, the whole process needs to be more adaptable, flexible, and caring… which also means labour intensive!” (British Asian, male, 18-29)

4. Bring the results back to the communities

Confining the research findings to academia can widen the gap between participants and the researcher, discouraging people from taking part in future studies. Instead, diversifying how research is communicated, including accessible reports and in-person presentations within community settings, could contribute to strengthening trust and generate new opportunities for engagement:

“The research needs to get back to the public who participated, they cannot be forgotten. Otherwise, they won’t participate again, and mistrust will continue.” (Black British, female, 40-49)

Next steps

The results of this project will be written up for publication in the coming months with plans to disseminate the findings widely across UCL, and beyond and to embed the learnings into relevant courses and teaching practices.

If you are interested in finding out more about this project or would like to be kept informed about future development – please email research.involvement@ucl.ac.uk

Teams of the Year Awards– a spotlight on secrets of successful teamwork

By guest blogger, on 1 June 2022

These are new awards introduced by the Institute of Epidemiology and Health Care Equality Action Group. Our work usually focuses on how to remedy problems – we wanted to find a way to spotlight and learn from teams which are successful in terms of productive, rewarding and enjoyable teamwork.

Team of the Year 2021

The Primary Care and Population Health (PCPH) Professional Services team won the award for Team of the Year 2021.

This is a large team (15 people) – congratulations to all of the members!

Orla O’Donnell – Site Manager and IEHC Finance lead

Ione Karney – PCPH HR and Finance administrator

Angelika Zikiy – Teaching Administrator Group lead

Sandra Soria Medina, Wahida Mizan, Dayan Soto Castellon and Diana Kwan – Teaching administrators

Rosemary Koper – Teaching Finance administrator

Jess Nye – Senior Programme Manager

Jeshma Mehta – Research Manager

Clare Casson – Project Manager

Becca Bayliss – Public Mental Health Network Coordinator

Sophia Hafeez – Research Group administrator

Bijal Parmar – Research Finance administrator

Ayan Robleh – IEHC Finance administrator

Amy Kerin – Clinical Trial & Research Design Service Administrator

What are the secrets of this team’s success?

Excellent collaboration

The PCPH professional services team work consistently as an excellent team, building on each other’s strengths and knowledge and working together collaboratively to achieve seamless service. They take on additional work for each other in order to meet goals and targets, and have been willing to work across the Institute in periods of staff absence and on new projects.

The team has formed a very strong bond over the past year and have been resilient during periods of change. They are a large team (15 people) which with members always willing to spend time sharing knowledge.

Communication

The team has ‘leads’ (e.g. HR, Finance, Research) and members work together, drawing on each other’s knowledge and expertise to problem-solve. Any problems are addressed collaboratively and immediately with those involved. We discuss what we have learned, to prevent problems happening again in the future. There is a no blame culture and this positive style of communication and collaboration trickles out into the wider department. There is no enforced ‘hierarchy’ culture within the team which means that junior members of the team feel supported and enabled to work as ‘One PS’

Shared learning

Knowledge and expertise is shared and valued regardless of whether team members have been in the department for many years, or have only recently joined.

Vision and flexibility

The team shows wisdom, flexibility and creativity, and strong team playing to meet shared objectives. The PS team also understand the bigger picture – the team worked consistently and without complaint in order to deliver on wider goals as a Department.

Most Valued Team Player Awards

Larisa Dinu won the ‘Most valued team player 2021’ award.

Larisa is a Research Assistant in the Department of Behavioural Science and Health. Below are a few comments from Larisa’s colleagues and Larisa herself.

“Larisa is delightful to work with, friendly, helpful and proactive”

“Larisa can see where things can be improved and identify ways to solve problems. She has noticed ways of improving our existing systems, so that a lot of day-to-day tasks are now running much more quickly”

“Larisa is very thorough and diligent in her work, and is quick to pick up on tasks to help out other members of the team. Larisa is an excellent communicator – all her emails are very clear, meaning other team members can perform necessary tasks quickly and efficiently”

Comment from Larisa:

“I am extremely grateful to have won the ‘Most valued team player’ award, and would like to thank my team, the iDEAS trial team, as well as the Tobacco and Alcohol Research Group for fostering such a collaborative and engaging environment to work in. It is truly a pleasure to work with such a fantastic group of people.

I am a keen advocate for lists, combined with flexible time-blocking of the most important three tasks of the day which is helpful in creating a rough structure for my days. I also like to separate deep work tasks and meetings if that is possible, to minimise task switching. 

Being a team player is not just about me, but also about the amazing people that I work with, and processes which facilitate collaboration. For example, we have weekly meetings with the whole team where we share updates and take decisions collaboratively. We also have regular updates between ourselves, and communicate efficiently either via video calls or email. This helps us to know what everyone else is up to and gives us the opportunity to provide feedback and offer help.

I find my work very rewarding, especially when we see the impact of our work in the real world.”

Sydonnie Hyman was runner up for the ‘Most valued team player award’.

Sydonnie is the IEHC Deputy Manager and Human Resources Lead.

“Sydonnie Hyman is a very responsive, helpful, and effective person! She has driven the Equality Action Career Progression group through the pandemic to great success, with a career development cycle, a mentorship scheme and a careers week amongst many other innovations.

Sydonnie has encouraged new members to join the Career Progression group and take on leadership, helping other people’s career development as well as enhancing the activity of the group. Sydonnie is also sensitive to people’s personal challenges”

Congratulations again to all of the winners!

Julia Bailey (Equality Action Group Co-Chair)

May 2022

Fuel and Food Poverty in the UK must be addressed before the energy price hike this Spring

By e.schaessens, on 18 January 2022

Written by Rebecca Barlow-Noone, a student on the MSc Population Health programme.

During the pandemic, inequalities in the UK have been brought into sharp relief with a rapid rise in food and fuel poverty, which I documented last year and have seen first-hand as a volunteer for Lambeth Foodbanks. Yet with fuel price caps set to skyrocket in the coming months and no plans to protect those on low incomes, it is likely to push even more people below the poverty line, forcing many to decide whether to ‘heat or eat’.

Foodbanks during the pandemic

Compared to 5 years ago, Trussell Trust food bank demand has increased 128%. Between April 2020 and March 2021, 2.5 million emergency food parcels were delivered in the UK by the Trussell Trust, representing a 33% increase from the previous pre-pandemic year. Furthermore, in December 2020, high levels of child food poverty in London led to additional food parcel distributions by UNICEF. This is despite the £20 per week Universal Credit (UC) uplift introduced in March 2020 in response to the pandemic.

The effect of Universal Credit cuts, energy price hikes, and inflation

As winter approached in late 2021, people on UC saw the tightest squeeze yet. The benefits uplift was cut, leaving recipients £1,040 per year worse off; prepayment energy tariffs saw the highest price increase of £153 to £1309 per year, which is used more by those on low incomes than high incomes; and inflation hit a 10-year high. While a taper rate of UC was implemented shortly after the uplift was cut, this only benefitted claimants who were already in work, and did not apply to people receiving legacy benefits.

I am deeply concerned how rising fuel costs this April will affect those already feeling the effects of the cut and price cap increase. When speaking to clients, I often hear how hard it is to make ends meet. I hear from parents forgoing meals for the sake of their children, and elderly clients unable to pay the higher energy bills through the winter. This is only set to get worse, with Age UK estimating that fuel poverty in the elderly may reach over 150,000 without financial protection this spring. It is unacceptable for people to be treated so poorly in a wealthy society such as the UK, at a time when they need the most support.

As costs of living increase for all, now is the time to increase support for those whose incomes at current UC rates do not allow for basic standards of living. Foodbanks across the UK represent an important lifeline, but this cannot be considered the norm and should not be relied upon by Government. The current rise in food bank reliance and the impending rise in fuel costs demands scrutiny into the social policies that are failing to adequately support those in need, to ensure those at most risk are protected from the increasing fuel price cap.

Health and social care access for people experiencing homelessness and lessons for primary care

By guest blogger, on 3 November 2021

This blog is written by Caroline Shulman and Megan Armstrong. Caroline has worked as a GP for people experiencing homelessness in primary care and as a clinical lead in a hospital homeless team. Caroline is principal investigator (PI) on a range of projects on palliative care, frailty and homelessness. Megan was the senior research fellow on this project and currently is the Programme Manager of PD-Care and the PI of exploring self-management in those experiencing low socioeconomic deprivation. 

Though everyone’s circumstances are different, to support people experiencing homelessness, it helps to understand some of the underlying causes of homelessness. Systemic factors such as austerity, increase in poverty and inequality, regressive changes to welfare systems, increased job insecurity with more zero hours contracts, lack of affordable housing and a hostile environment for migrants have contributed to significant increases over the last decade. However, in addition, there are individual vulnerabilities that increase the likelihood of becoming homeless. It is estimated 90% of people who are homeless have experienced adverse childhood experiences with 54% experiencing four or more (1). Adverse childhood experiences include abuse (emotional, physical, sexual or neglect) and household dysfunction such as living with domestic violence, or with a family member who has an addiction, is suicidal, mentally ill or in prison. Lack of having needs met and being soothed as a child impacts on cognitive, emotional, and social development and unresolved trauma is associated with an overdevelopment of the emotional and reactive parts of the brain (2).

People experiencing homelessness have some of the worst health outcomes of any group in society with the average age of death being in their early 50s  (see here). They have a much higher rate of most long terms conditions, including heart disease, respiratory disease than even populations in the most deprived sectors of society. Conditions usually found in older populations, such as cognitive impairment, incontinence, poor mobility, and frailty are highly prevalent at a young age in this population. Many people, with a history of sleeping on the streets in London, end up on homeless hostels. Homeless hostels are staffed by support workers who have no training in health or social care. In one hostel (for adults aged 35+), where residents average age was 55, frailty scores were equivalent to a population of people in their late 80s. All had multimorbidity with the average number of conditions per person being seven. Older age conditions such as cognitive impairment, falls and poor mobility were highly prevalent, though only 9% had any form of social services package of care (3).

One reason for the young age of death of people experiencing homelessness is the barriers they often face in accessing health and social care. Our study aimed to explore these barriers and potential facilitators from the perspectives of hostel residents and staff (4). We interviewed 18 homeless hostel managers/support staff and 15 people experiencing homelessness from six homeless hostels in London and Kent.

We found there were service barriers to health and social care access due to:

Stigma of both the residents and the hostel staff (often reporting not being believed):

“We have got one of the local GPs around here, they will not accept our residents unless a keyworker is with them, and they have to attend all appointments with them and register with them. They won’t accept them on their own.” Support worker

Lack of communication and information sharing from services with the hostel:

“I was that upset and annoyed that she’s [social worker] not speaking to anyone else that I’m working with [in the hostel]. I said, “It’s not keeping you up to date.” I speak to you once every three weeks, you don’t know what’s happening. So I could be going through a really difficult time and you’re not aware of it….” Resident

A lack of trust from the residents and a struggle to build relationships beyond the hostel staff:

“I’m still finding I’m having to learn to trust people. I don’t always trust people now, and my confidence is not brilliant. Once I know someone [this is different]…., but I’m not very good coming forward at the beginning.” Resident

Incorrect assumptions around capacity and the role of the hostel:

“I think because a lot of people presume because it’s [the hostel] a 24-hour manned project, they’ve got staff. They [external services] don’t really realise that our job isn’t to be carers…It’s not always practical to see everybody every single day. What people see from the outside is 24-hour staff” Support worker

The impact of lack of health and social care support led to staff going beyond their job role, continuous support needed by the residents, and burnout:

“We also have to go and collect people’s medications. We don’t have to but we’re doing that as well and liaising with GPs to put [medication] in dosette boxes and things like that.” Hostel staff

Overall, the hostel staff and residents had a great, trusting relationship. However, due to the lack of external service support, this can become a huge responsibility for the hostel staff. The quote below highlights the trust in the hostel staff.

“I think she [hostel staff member] cares about me. I’ve never actually asked her, does she care? The staff here are alright, I like them. I like the staff here. I ain’t got a bad word to say about them.”

An example of the causes of burnout for hostel staff include the trauma when a resident dies:

“When he was standing along the walls and he was saying, “I’m feeling pain,” and he just slid into the floor. It was during the night, early morning so there were only two staff. Staff were running up and down. It was quite a traumatic experience.”

See our recent paper and blog on palliative care for people experiencing homelessness.

What does this mean for primary care?

• Everyone needs to be able to register with a GP. Groundswell have developed ‘My Right to Healthcare’ cards that can be posted for free.
• Training is available for reception staff including a short 6 minute video: resources here
• Primary Care Networks should consider having an inequalities lead to explore local solutions. They could also undertake a self-assessment to support improved engagement with inclusion health groups (see here).
• Services should be person-centred, and trauma informed so that people feel safe, welcome, listened to and understood. Here is a video on trauma informed communication skills and an overview of training available here.
• Services need to recognise the importance of developing trust and trusting relationships, as these are at the heart of healing and recovery. Ideally with the continuity of care with the same provider.
• Services should  proactively support people with literacy, language, and cognition difficulties.
• Primary care services should consider how they can take care to people with the highest need to enable trust to be developed. For example, enhanced services undertaking in-reach into hostels can be highly successful in increasing engagement. Reaching out to frontline staff in homeless services, who often feel stigmatised, can be a first step in acknowledging the support they are providing and explore how they can be better supported.

It is our duty to find and care for those in our community who are excluded and marginalised and advocate for their needs. We need to embed inclusive care and assertive advocacy as core to our work.

References

1. Liu, M., Luong, L., Lachaud, J., Edalati, H., Reeves, A., & Hwang, S. W. (2021). Adverse childhood experiences and related outcomes among adults experiencing homelessness: a systematic review and meta-analysis. The Lancet Public Health.
2. Bennet, M.S. (2017), ‘Connecting Paradigms: A Trauma-Informed & Neurobiological Framework for Motivational Interviewing Implementation’, Bennett Innovation Group, Denver.
3. Rogans-Watson, R., Shulman, C., Lewer, D., Armstrong, M., & Hudson, B. (2020). Premature frailty, geriatric conditions and multimorbidity among people experiencing homelessness: a cross-sectional observational study in a London hostel. Housing, Care and Support.
4. Armstrong, M., Shulman, C., Hudson, B., Stone, P., & Hewett, N. (2021). Barriers and facilitators to accessing health and social care services for people living in homeless hostels: a qualitative study of the experiences of hostel staff and residents in UK hostels. BMJ open, 11(10), e053185.

Opinion piece: My experiences so far of hybrid working at the PCPH department

By guest blogger, on 4 October 2021

Dr Sarah Griffiths, Senior Research Fellow and Study Manager of
PriDem: Best practice in primary care led dementia support

In this blog, Sarah Griffiths discusses her experiences of beginning the hybrid working at the PCPH department.

Emily Spencer (Research assistant, PriDem) and I have started coming into the department for two days a week.  We have been together in the office twice so far and have seen benefits. Both being new to UCL, it has been an important step in starting to feel a sense of belonging to a department. I think being in-person for some of the time is enhancing the development of an effective working relationship. At the start of each week, we plan weekly goals and have started to prioritise tasks that would work best in-person for office days. Enjoying everyday conversation just for the sake of it, without this being a prelude to a meeting has been a novelty, and the potential for using bodily movement for ‘acting out’ anecdotes or being unaware of what our faces are doing, has created a much-missed sense of communicative freedom. Going for coffee together, airing thoughts as they occur and having spontaneous discussions (rather than having to compose them in an email or wait until the next Teams meeting), are all great benefits of hybrid working and breed creativity. It can also be easier to read and respond to people’s emotions when in person and there is nothing like a co-present giggle for enhancing well-being.

It is early days, and there haven’t been many people around in the department yet, but some chance meetings in the kitchen and corridor have led to spontaneous conversations with new people and a chance to connect with the wider team.

Before the pandemic I loved rare WFH days. To me they were luxury; a chance to switch off distractions and ‘get in the flow’, with all the benefits of being able to get washing done, cuddle the dog and eat whole packets of biscuits unobserved. However, since this became the norm, the enjoyment has gradually faded for me. I’m fortunate that I can find space to work, away from family members, and I don’t have children living at home. Even so, at times I’ve felt trapped by lack of variety. Like many people I’ve been super productive, but have often worked crazy hours, due to a lack of natural breaks to travel to/from work, and no escape from the ‘workplace’.

I live in Cornwall! It takes me three and a half hours to get to London and I’m lucky because I have accommodation when I am there. I am working out ways of working on a train when the internet is poor, saving tasks for travel times that don’t require online connection. Having a snooze and recharging my batteries has also been on my to-do list.  I have noticed that coming back to Cornwall after my London stint has led to appreciating and enjoying home working all over again.

However, there are issues to overcome to optimise the hybrid working experience, and everyone’s situation is unique. Although currently Emily and I have started fulfilling the UCL guidance of aiming for 40% embodiment, this guidance is somewhat ambiguous and has been variously interpreted. It will not be possible in the literal sense once recruitment starts. Our working practices will vary week to week, in terms of where we need to be and how we approach interactions. Some research activities will be in-person and some remote. However, the challenges of background noise and confidentiality mean remote activity will not necessarily work when carried out in a shared office. We are going to have to negotiate how we do this, building in flexibility and ensuring that we have the right equipment and office ventilation. Headphones and suitable microphones can help with confidentiality and researchers keeping their own vocal volume to a minimum, although many of our participants will have reduced hearing and/or find background noise highly distracting.  The current requirement to wear masks in shared offices adds to the challenge of video calls, especially as people living with dementia and those with hearing difficulties gain communication support from seeing people’s faces.

These challenges have led us discuss future arrangements for hybrid working within our team. The 40% embodiment guidance includes discussing individual circumstances with line managers. We hope that this can be highly flexible, with clearer guidance around managers using discretion and trust; monitoring how well research staff are engaging in remote versus in-person working. Importantly, this will entail balancing efficiency with wellbeing and maintaining a sense of belonging. Fatigue is one to keep an eye on as people return to the world of commuting. Depending on the person, the team and the tasks at hand, researchers may want to be embodied for a whole week at time, but then balance this with a week of working from home. I hope that we can continue this conversation about how we enter the new phase of hybrid working.

Developing educational leadership skills as an early career academic

By guest blogger, on 28 September 2021

By Megan Armstrong, on 24 September 2021

Dr Danielle Nimmons, GP and NIHR In-Practice Fellow

I am a GP, researcher and educationalist at UCL and I thought I would document some of the milestones in my early academic development. As part of my training I was fortunate to be awarded an NIHR Academic Clinical Fellowship (ACF), which has been an amazing opportunity to develop my research and teaching skills.

My research has included studies on frailty, dementia and Parkinson’s, for example conducting reviews. However, I knew at the start of my ACF that as well as research, I wanted to gain teaching experience and achieve outputs, such as accreditation as Fellow of the Higher Education Academy / HE Advance (FHEA). At UCL we are very fortunate to be encouraged to develop both research and educational skills. Below I outline the main teaching I was involved in, what I got out of it and suggestions/tips for others who may be interested in developing educational leadership skills as an early career academic.

Teaching experience at UCL

As a GP registrar in my 3^rd year (ST3) I became a module lead for Preparation for Practice (PfP), part of the Year 4 MBBS programme. My roles included designing simulated patient cases for the students, direct teaching, supporting other GP tutors and administration staff, course evaluation and quality assurance. I also led the transition from face-to-face delivery to online as Covid hit, developing recorded (asynchronous) and live webinar (synchronous) material.

In my 4^th year of training  (ST4) I decided to get experience of small group teaching in my GP practice as a Medicine in the Community (MIC) tutor, for two UCL medical students over the academic year. Students spent 10 days in my GP practice in total, and I got to see them improve clinically while I gained personal tutoring skills. Sessions included an interactive workshop on a disease /condition, formative assessment in the shape of MCQs, role play and patient interactions between students and my NHS patients who gave up their time to help.

What I got out of it

I love teaching and find it incredibly rewarding! The variety of teaching experiences helped break up my academic time and focus when working on different project. These experiences included:

• Face to face teaching,
• Online teaching,
• Developing teaching material,
• Evaluation teaching activities and
• Quality assurance

These experiences also contributed to my successful fellowship applications and being awarded a UCL Excellence in Medical Education award (EMEA) (see here).

I was also fortunate to get some outputs, including presentations, awards and publications: Medical student mentoring programs: current insights and The UCL ‘Preparation for Practice’ teaching programme. 

Reflections

Balancing GP training (exams and completing my compulsory training portfolio), research and teaching can be challenging, at times I definitely felt like I was juggling many balls and just about managing not to drop any! The extra academic day in my 4^th year helped but only because I taught less on the PfP programme, which gave me more time do practice based (MIC) teaching. Having boundaries and recognising when my plate was full also helped. For example, during my final GP (MRCGP) exams I tried not to do too much else.

Teaching was most enjoyable when I linked it to my research. This included selecting patients from under-represented groups for students to interact with in their GP teaching sessions, which complemented my clinical research project exploring how people from under-represented groups self-manage Parkinson’s disease. As my teaching was informed by the research I was doing, it also saved time when it came to lesson planning.

Finally, most of my academic time was during the pandemic and teaching not only helped me network with other academics within the department but also with hospital registrars doing acute medicine and acting as teaching fellows, academic pharmacists and academic clinicians from a range of specialties based at the medical school main campus.

Tips

Tips for other early career academics:

1. Say ‘Yes’ to opportunities
2. Recognise limitations; i.e., Time! It is impossible to do everything but you can make a real impact to programmes if you focus on a select few.
3. Look for a variety of educational experiences. For example, online vs in person teaching, design teaching vs evaluation
4. Try and get some outputs, e.g., presentations, higher education fellowships like the FHEA
5. Link it to your research!
6. Discuss with current ACFs and module leads to get an idea of what is best for you.

I would encourage all early career academics to gain teaching experience and hope this has inspired some to do so!

References

1. Nimmons D, Hatter L, Davies N, Sampson EL, Walters K, Schrag A. Experiences of advance care planning in Parkinson’s disease and atypical parkinsonian disorders: a mixed methods systematic review. Eur J Neurol. 2020 Oct;27(10):1971-1987. doi: 10.1111/ene.14424. Epub 2020 Jul 30. PMID: 32603525.
2. Nimmons D, Giny S, Rosenthal J. Medical student mentoring programs: current insights. Adv Med Educ Pract. 2019 Mar 4;10:113-123. doi: 10.2147/AMEP.S154974. PMID: 30881173; PMCID: PMC6404673.
3. Nimmons D, Jones MM. The UCL ‘Preparation for Practice’ teaching programme. Med Educ. 2020 Nov;54(11):1077-1078. doi: 10.1111/medu.14326. Epub 2020 Sep 3. PMID: 32885435.

Starting a PhD in the wake of COVID-19: a survival guide for new students

By guest blogger, on 13 September 2021

Claire Grant, first year PhD student at University College London’s Institute of Epidemiology and Health Care, provides tips for starting doctoral studies in unusual times.  

I found out that I’d been awarded an Economic and Social Research Council (ESRC) studentship to complete a PhD in Epidemiology and Public Health in March 2020. In the following months, the situation in the UK and around the world unfolded into what we now describe as “unprecedented” times, and the world has since changed. Completing a PhD in any time is known to be an overwhelming, challenging and sometimes stressful experience – but there are some unique challenges in the wake of COVID-19.

This blog post offers an insight into my personal experience of starting a PhD at UCL in 2020, with the aim of sharing some tips for navigating the specific challenges of home working and remote learning. It goes without saying that this list is by no means exhaustive, and that each student will face unique challenges and opportunities as they embark on their studies. This is simply a reflection of my past year and a message of hope to new starters.

1) Ask questions

Starting anything new can be daunting. Understanding how things work, making sense of departmental norms and university culture is difficult, especially when you are working from home. My advice is to ask questions from the start.

The reality is, there are many questions you will not know the answer to and a lot of these can be easily answered by friendly and knowledgeable staff/students at the university. Knowing who to ask for what will become clearer the more communication you have. Asking peers, supervisors and departmental staff for ‘best contacts’ to deal with concerns will help orientate you and your position in the university.

2) Create a good home working environment

If you are working from home, you will need the appropriate equipment and environment to do so. Funding bodies and even departmental funds might be able to support you to buy the software, equipment, and resources you need to work. I assumed that being a student meant that I wouldn’t be entitled to support – but this was not the case (see point 1 – ask questions).

From the beginning, try to create a working environment that is separate from your home life. This can be challenging, especially if you’re living in a place with limited space. If possible, try to work in a separate room to where you sleep, and if this is not possible, set-up a separate working station within the ro om. As tempting as it is to sit in bed all day, the environment you create to work in will impact on your motivation more than you might think.

That said, I will admit that in an effort to create my ‘ideal working from home environment’ earlier this year, I purchased a cheap computer desk from Facebook marketplace. The questionable instructions (see pictures) and my lack of craftsmanship mean that the unassembled planks of wood are still lying in my kitchen.

3) Network

A PhD is a solo venture, but nobody can complete it alone. In the absence of happen-chance meetings on campus, it is important to remember to opt-in to networking opportunities. Sign up to mailing lists on topics and methods that interest you. Email peers in your cohort and arrange Zoom coffee breaks. Download Twitter and follow accounts that relate to your work. Attend departmental seminars, and if you’re feeling brave, even ask questions! The more virtual rooms you enter – the more people and opportunities you will be exposed to.

Networking doesn’t just have to be PhD related. The Department of Epidemiology and Public Health did a great job at organising informal catch-up sessions for students over the past year, and the conversations were mainly structured around Netflix recommendations and lockdown recipes. The Students’ Union at UCL also have a wide range of clubs and societies for postgraduate students to get involved with. Building a social network of likeminded people with similar interests will help you find your place.

4) Set boundaries

               Your working day

Structure a day that suits your project and working style. Nobody is productive all day, yet we can feel guilty for taking breaks, particularly when working from home. I’ve learnt that a long lunchtime walk listening to a podcast (usually the Guardian’s Today in Focus) makes me feel brighter and more ready for the afternoon than if I eat lunch slumped over my laptop. If you’re required to do a lot of reading on your computer – make an active effort to schedule time away from your screen throughout the day. Your eyes and mind will thank you for the rest.

Being online makes us more accessible than ever. This is exciting as we can attend more events, seminars, and trainings than ever before. However, be realistic and thoughtful about how much you can do. For example, don’t try to complete other work tasks while attending online seminars or training. You wouldn’t do that in person. Allow yourself the same time and energy you would offline. This is much easier said than done.

Your personal life

Set boundaries with ‘PhD life’ and ‘regular life’ as you would any other job. Your research will be more important to you than it is to most people, and it might feel all consuming. It’s also likely that you’ve chosen a topic of particular interest to you, making it difficult to switch off. There’s always more work to do, more papers to read and more ideas to talk through. It can feel as though you should be doing something all the time. At the beginning, I found this difficult to manage.

I also found it strange not having the same sense of completing a task as I did when I submitted course work in previous taught courses. At undergraduate level, I remember the feeling of relief after sitting exams, knowing I’d be enjoying some well-deserved time off before being informed of a definitive result – ‘pass’ or ‘fail’. From my experience, this is not the case in a PhD. Feedback from supervisors usually leads to more work. Good project management will account for the much-needed breaks in this academic marathon. When you do take time off, try to detach completely. Let your supervisors know you won’t be available, turn off email notifications on your phone and wait until you return to reply to messages.

Importantly, life continues as you study. Make sure to carve out room for friends and family. Make time for hobbies and interests. A PhD is only one part of your identity.

5) Trust your abilities

You are probably already doing better than you’re giving yourself credit for. It takes time to get used to this new way of working and the beginning of such a mammoth task can feel daunting. Remember that every project is different, so try not to spend time comparing your progress to your peers. Your supervisors will help guide you and there are various UCL check-ins along the way to make sure you’re on track (such as Thesis Committee reviews).

One of the most common anxieties among new doctoral students is ‘imposter syndrome’ – the overwhelming feeling that you’re a fraud. Take note: you have started on a training programme and that is merited on the basis that you have the abilities required to succeed. Trust the process and know that everyone else is probably thinking the same about themselves.

6) Be flexible with your project

Due to COVID-19 restrictions, your project might have to be adapted or changed completely. You are not alone if this is the case. Over the past year many students have faced dilemmas with methodologies and research topics that are not easily modifiable to the world of online learning. Be open to potential alternatives and listen to the experiences of others in your field. There are many learnings from the past year which will be useful to consider when thinking of alternative approaches to your research.

7) Be kind

To yourself, to your peers, and to staff.

Students and staff at UCL have worked tirelessly to adapt to new ways of learning over the past 18-months. It has been a tough time for everyone, and we have all been impacted in some way. Try to acknowledge this and be compassionate to yourself and others. Remember that staff are also facing some of the same challenges as students and will appreciate your understanding.

Enjoy the journey & best of luck with your studies!

Thinking about how we support family carers of people with dementia in light of carers week

By guest blogger, on 10 June 2021

In this post Nathan Davies talks about some of the recent work he has led on support family carers of people living with dementia, and talks about some of the Covid-19 work which has been implemented in the NHS.

This week marks Carers Week, you may have all seen in the media the wealth of stories and people talking about the challenges that informal carers (friends or family) have experienced over this past year during the pandemic. Carers UK have reported this week that 72% of carers have not had any breaks from their caring role since the start of the pandemic (1).

We know one of the most demanding caring roles is caring for someone living with dementia, with over 750,000 carers currently in the UK. Most of my work looks at how we can support family carers, in particular in the later stages of dementia or planning for the end of life. This is a particularly difficult time for carers and one of the key challenges they face is making decisions about the individual’s care. Decisions may include moving into a care home, increasing the amount of support, managing eating and drinking difficulties, and ensuring the everyday well-being of the individual.

In a recent project we explored the decision-making process carers go through and how they make decisions(2). We developed a model of decision making which considers the context and the processes involved. Making this process and the context explicit may be helpful for carers as a guide to help their thinking when making complex decisions, but also for professionals when trying to start significant conversations.

It is important to consider the context in which decisions are being made including the individual’s personal preferences about their care, any advance care plans they have made or lasting power of attorney in place, considering if the person still has capacity and what their current health status is, and finally, thinking about what support is available from others.

As you can see in the image there were 7 stages in making a decision:

1. Identifying who is the decision maker or the team and clarifying what is their role
2. Sharing information about the decision which needs to be made, this may include what the problem is, what are your options etc
3. Clarifying what is important to those involved, considering their values and preferences, being mindful of disagreement
4. Managing and considering the emotions involved in making what can be quite significant decisions
5. Think about what is the feasibility of the options which are available – this is likely to include finances and the impact on the wider family or support network
6. Balancing what you would like to do (preferred choice) with what you can actually do
7. Make the decision and reflect on the outcome of this decision to inform further decisions or refine your decision

Now this may all seem rather theoretical, but we have already used this to create some applied resources which carers and professionals can use to help with discussions and decisions.

We have developed a decision aid to support family carers of people living with dementia who are at risk of or who have Covid-19 and are not able to make their own decisions. The decisions focus on care at home, care in the care home and care in hospital. In particular, we have included:

• How to manage care at home
• How to support your relative/friend in a care home
• What to do if they become unwell
• Should they go to hospital
• How to keep in touch if you can’t visit

We provide a variety of information including the signs and symptoms of COVID-19 which may be different for older people, and the legal aspects of making decisions. We bust some myths about what support options are available at home. We also consider the benefits and advantages of different options of care including going into hospital.

This guide has been widely shared and is freely available online. It has been implemented as part of NHS England and NHS Improvement Dementia COVID-19 Pathway.

The latest version of the decision guide is available now from: https://www.ucl.ac.uk/psychiatry/decision-guide

For our work on this we also won Alzheimer’s Society’s Dementia Hero Award for Research.

1. Carers Week 2021 report. Breaks or breakdown Carers Week 2021 report. London; 2021.
2. Davies N, De Souza T, Rait G, Meehan J, Sampson EL. Developing an applied model for making decisions towards the end of life about care for someone with dementia. PLoS ONE. 2021.

Health messaging to encourage key protective behaviours to reduce the spread of Covid-19: What we can learn from existing evidence about getting the message right?

By guest blogger, on 18 May 2021

In this months post Dr Sadie Lawes-Wickwar, a Health Psychologist and Lecturer in the department teamed up with other health researchers, health psychologists, public health practitioners, and public contributors across the UK during the COVID-19 pandemic to find out what we can learn about getting the message right to support the public to prevent the  spread of Covid-19.

In the event of an outbreak of an infectious disease, the population is required to make often rapid changes to their behaviour to reduce the spread. Public health campaigns can support population-level behaviour change, but it is crucial that the public receives consistent, clear information, so they understand what it is they need to do new (e.g. when using fa

ce coverings). However, public information during a pandemic can be conflicting, change frequently, or use language that the general population may find it hard to understand. We need to think

carefully about the messages that are used to instruct the public to perform behaviours that are key to reducing the spread of a virus.

After the outbreak of Covid-19 in the UK last year, a collaborative group of health psychologists, behavioural scientists, public health practitioners, and members of the public formed the Health Psychology Exchange to support the public health response to the pandemic. A group of Health Psychology Exchange members set about reviewing existing evidence to inform recommendations for local and national public health teams in developing health campaigns. Our aim was to identify what characterises effective public health messages for managing risk and preventing infectious disease, and what influences people’s responses to such messages.

Our first review of public health messaging found that, to influence behaviour effectively at the population level, messages need to be acceptable to the populations they are targeting, be delivered by credible and trustworthy sources, and in language target populations can understand, to increase understanding and threat perceptions [1]. Specifically, in the context of encouraging vaccine uptake, evidence tells us that providing information about virus risks, vaccination safety, vaccine clinics, and addressing misunderstandings about vaccines, can support uptake at hospitals (e.g. among hospital staff) or within local communities. We can also support understanding and beliefs about vaccines by framing messages in a particular way, such as emphasising the reduction of risks and the benefits to society from being vaccinated [2].

Our work has highlighted gaps in research and the development of previous public health messages, including the valuable input of the public in the design, delivery, dissemination and evaluation of health messages [2]. One of our key recommendations has been the involvement of local communities in all aspects of the messaging process, which is also in line with recommendations from the World Health Organisation (WHO)[3]. We also need more high-quality research to demonstrate the effects of messaging interventions on the uptake of recommended behaviours. Surprisingly few studies to date have evaluated messages adequately to be able to conclude the definitive impact of campaigns on population-level behaviour, such as vaccine uptake.

Our recommendations have informed two British Psychological Society (BPS) Behavioural Science Disease Prevention Taskforce guidance documents to date, one to support public health teams to deliver effective public health campaigns, and another to optimise vaccination uptake during Covid-19. Using behavioural science can boost public health campaigns during the Covid-19 pandemic, and I hope to see more collaborations between health psychologists and public health teams in the coming months as we look to a brighter future.

1. Ghio, D., et al., What Influences People’s Responses To Public Health Messages For Managing Risks And Preventing Disease During Public Health Crises? A Rapid Review Of The Evidence And Recommendations. PsyArXiv Preprints, 2020.
2. Lawes-Wickwar, S., et al., A rapid systematic review of public responses to health messages encouraging vaccination against infectious diseases in a pandemic or epidemic. Vaccines, 2021. 9(2): p. 72.
3. WHO, Communicating risk in public health emergencies: a WHO guideline for emergency risk communication (ERC) policy and practice. 2017: World Health Organization.

What can students do to make the most out of their Master’s degree?

By e.schaessens, on 8 July 2020

By Louisa Manby and Kirsi Sumray

We are both students on the Population Health Masters programme at UCL. Louisa came to UCL after undertaking a BSc in Biomedical Sciences at The University of Manchester. Kirsi completed a BA in Anthropology at The University of Bristol in 2017, took a gap year and then worked for the British Red Cross before returning to academia. We have three tips to share with you from our own experiences about how to make the most out of your time at UCL.

Research opportunities

It is absolutely possible to find research opportunities outside of your degree programme. There are multiple health related institutes at UCL including the Institute of Global Health, Institute of Applied Health Research and the Institute of Epidemiology and Healthcare. From our experience, the best way to find research to get involved in is to reach out to academics that work in areas that interest you. Academics frequently have research that Master’s students can volunteer to participate in which isn’t advertised – the only way to find out is to get in contact.

Given the relevance of our Masters, we were both really keen to get involved in research on COVID-19 at UCL. Through reaching out to academics we became aware of new research being run by RREAL and were delighted to be given the opportunity to get involved. RREAL is the Rapid Research Evaluation and Appraisal Lab with international networks co-directed by Cecilia Vindrola-Padros and Ginger Johnson at UCL. RREAL aim to produce relevant and rapid qualitative health research in time-sensitive contexts. We have both joined the RREAL team in conducting their research relevant to COVID-19. This has involved a rapid appraisal of healthcare workers’ perceptions and experiences of responding to the COVID-19 pandemic through analysis of the relevant media, social media, policies and using interviews with healthcare workers. We have been involved in research relevant to the UK, although the study is also being mirrored internationally in 18 countries (at the time of writing). Emerging findings from this research will be published shortly – make sure to look out for this as it will be both of our first publications! Some of the teams’ future publications will consider the impact of the delay or cancellation of elective surgeries, the mental health of healthcare workers and the impact of working in palliative care in the UK during the pandemic. Alongside our UK research, we have both been involved in an opinion piece on the potential impact of COVID-19 in lower- middle- income countries. This paper will be published soon – it makes recommendations based on learning from previous experiences to minimise the impact of this pandemic on fragile healthcare systems. Despite supporting different streams of data collection and analysis, we have both gained valuable skills in conducting qualitative research. We are both really glad that we reached out to find these opportunities and would really encourage others to do the same – you won’t know what’s out there unless you give it a go!

Extra-curricular activities

In order to build on what you learn in your Masters, UCL provides many opportunities to attend events, join societies and go to conferences and free talks from different departments. There are a number of different societies at UCL related to health which include the “Students for Global Health Society”, the “MedTech Society”, the “Application of Psychedelics Society”, “Student Action against Homelessness Society”, “Friends of Médecins Sans Frontières” amongst many others. These societies offer events with opportunities to network with experts and like-minded peers, as well as interesting lectures and stimulating debates. It is very possible to attend events at UCL around your studies, as they are often scheduled at lunch time and in the evenings. In fact, UCL has been running a series called “Lunch hour lectures” since 1942, these lectures are open to everyone for free! These have continued virtually throughout the pandemic and have been really great as a mid-day break from dissertation writing. For example we have recently attended two lunchtime talks called “Trump 2020 and America in a post-COVID world” which was by a lecturer in Global Politics and “Insights from the COVID-19 crisis: useful for the UK’s energy transition to net zero” which was by a Research Fellow at the Energy Institute, BSEER. We would really recommend attending talks and events as they broaden your knowledge beyond module content. They can also be useful for identifying your specific interests which is important for deciding optional modules, dissertation topics and even future careers.

Networking

One huge benefit to seeking research opportunities whilst at UCL and also in attending extra-curricular talks and events is networking. Through attending talks we have been able to meet experts in the field which has been really useful for us to be able to ask career specific questions. Also, through the research that we have been undertaking at RREAL, we have made global connections and built relationships with students from different institutes, public health consultants, and academics from both UCL and other internationally renowned institutions. Networking can be really useful and getting to know people within the different institutes can help with finding a dissertation topic/supervisor and learning about different career paths. If you do this early on you may even find a unique dissertation opportunity that interests you. This is what Kirsi did, she was keen to learn more about digital health interventions so reached out and was able to find a dissertation within a different institute titled “Assessing inequalities in access to STI self-sampling kits across the UK”. Although it may not feel like “networking”, the connections that you make with your peers are also invaluable. We have found that people on our course come from really diverse backgrounds and are at different stages in their careers. This makes for fascinating discussions in lectures and seminars because people can provide insights from their previous experiences working in different countries.

We hope these tips are useful and give you some ideas of extra-curricular opportunities that can work around and compliment your degree programme to help you make the most out of your time at UCL!