Summer school at home: Learning online and adapting research to reach the ‘hard to reach’

Posted by Emma Adams, Newcastle University, and Jo Dawes, University College London, NIHR School for Public Health Research (SPHR) Pre-Doctoral Fellows

Starting a new post in a new institution just as a global pandemic and lockdown sweeps the UK is not how we envisaged beginning our NIHR School for Public Health Research (SPHR) fellowships. When our training and development allowance letters came through initial thoughts were to delay booking any training until it was possible to attend in person. However, as time passed, it became clear we may be waiting some time. This realisation coincided with hearing about the “Applied Research Methods with hidden, marginal and excluded populations” course run by Nuffield College, University of Oxford. The course is usually a weeklong residential summer school, but this year it was offered online. The idea of spending five full days sitting at home doing online learning seemed a disappointing second best to a week in Oxford and somewhat limited our enthusiasm. However, these concerns were misplaced. We could not believe how engaging the course was, with tutor Andrea Rossi doing an excellent job of varying the activities, keeping us captivated and packing the course with relevant, interesting, and interactive tasks. 

For this ‘participatory research method’ we were given 5 minutes to create a map of our childhood community, using items we could easily reach. The task was designed as an ‘icebreaker’ activity to start a conversation about our childhoods. Using available objects, rather than drawing, takes away any pressure interviewees might feel about their aptitude for drawing. This activity could be adapted in rural communities using found items outside. Once my map was created, I talked about the map and why I had highlighted specific aspects of my community - this is the point at which ‘data collection’ might start.

Beginning with what makes a population ‘hard to reach’, we were armed with the linguistic tools to define whether our population was hidden, marginal, elusive, rare, excluded, or blurred (see Table 1 for breakdown). By breaking down populations into these different categories, we were better able to understand approaches for reaching and involving them in research. People experiencing homelessness may be perceived as ‘hard to reach’, when in fact they might just be elusive (purposely hiding or not reporting). If we, as researchers, recognise individuals may be making a conscious decision not to report, then perhaps we need to build a foundation of trust. The responsibility a researcher has to find ways to reach the ‘hard to reach’ was one of the most important things that we learned. 

With optimism that the virtual learning might not be as onerous as we had feared, we jumped into three days of research methods (both qualitative and quantitative). Challenging us to approach every technique from both the researcher and participant perspective, we were pulled out of our comfort zones and into creatively mixing research techniques. Opportunities to transform recruitment strategies (such as respondent driven sampling into a data collection tool for analysing social networks were explored. Learning to make the interview experience more interactive challenged our preconceptions of data collection - ever thought about asking a participant to reconstruct an important/memorable place with only items in their kitchen? Having experienced this first-hand, we both agree it was a great facilitation tool as a participant and researcher. The breadth of material in the course left us feeling that it was a week well spent, despite the initial apprehension and sitting at a computer in the blistering summer heat.

As a result of attending this course, we have already adapted how we approach our research activities. Jo was struggling to define a ‘hard to reach’ population in a patient and public involvement (PPI) paper. The course provided real clarity about this topic and helped her confidently address this definition in her writing. Emma was trying to find a way to approach recruitment and the re-shaping and framing of populations has provided me with optimism about my future recruitment strategy.

There is no doubt that by learning online instead of face-to-face, we really missed out on networking opportunities with our course peers - nothing could really replace a good natter over coffee. Conversely, the online nature of the course really opened up the cohort - we were learning with people sitting in their homes in England, Wales, Switzerland, France and Germany, while our tutor taught us from his apartment in Bangkok. Perhaps without being online, we would have been a far less international cohort. After undertaking this excellent course, we certainly feel more positive about online learning, how engaging it can be and how - in these uncertain times - it is important to not simply wait for face-to-face learning to return as the norm. The variety of learning and research activities we used online challenged us to translate so much of what we usually do face-to-face to our ‘virtual classroom’. As a result, we developed skills in how to adapt our current methods of communication in our research.

Our take home messages from the course:

1. Online research and learning can work well if you are creative and willing to be flexible.
2. Researchers must consider reasons some populations are ‘hard to reach' (are they rare, hidden, elusive, marginal, excluded or blurred?).
3. When you recognise WHY a group of people are ‘hard to reach’, you must adapt your research methods to better reach them.
4. Through mixing methods/data sources you can strengthen your understanding of ‘hard to reach’ groups.

Can your education, income or even your job affect your chances of receiving newer cancer treatments?

Posted by Ruth Norris, PhD Researcher, Newcastle University

The way we treat cancer is rapidly changing. We know that individual cancers cause different genetic changes and that new drugs targeting these differences could help improve treatment. This approach is known as precision medicine. In addition, there are treatments using the immune system to attack the cancer, known as immunotherapy. The number of these new treatments have grown hugely over the past few years. In 2018 alone, they accounted for over 90% of the new cancer drugs being developed. These new treatments are also often associated with hefty price tags. For example, immunotherapy as a course of treatment for advanced lung cancer, can cost over £80,000.

Used alongside these new treatments are specific biomarker tests, which help determine if the cancer is likely to respond to these drugs. Doctors use this information to guide decision making so that in theory, the right patients, who will benefit the most from these drugs, receive them. Without biomarker testing it may be impossible to access these drugs or use them appropriately. 

Sounds great, so what’s the catch?

Unfortunately, we know with traditional cancer treatments (surgery, chemotherapy and radiotherapy), that access is not always decided based on the patients’ needs. There are many complex reasons why this might be - and having a lower socio-economic status is one of them. Socio-economic status means your individual or family’s social and economic standing relative to others. It is measured using factors such as income, education and your job. Socio-economic reasons may impact the number of other health conditions a patient has, their ability to request help or even the conversation they have with a doctor. All of which can affect the treatments they receive and the outcomes from therapy. What we don’t know yet is whether the socio-economic differences we see in traditional cancer treatments are also seen with both biomarker testing and the delivery of precision medicines and immunotherapies described above.

Why is this work important?

The NHS was set up on the idea that treatment should be provided to all on the basis of clinical need. We don’t expect that our level of education, the amount of money in our bank accounts or the power associated with our jobs will affect our access to treatment compared to another patient diagnosed with the same cancer at the same stage and with the same prognosis. Yet if these newer treatments can improve cancer outcomes (for example by increasing tumour responses, minimising side effects and improving survival), socio-economic status should not be a factor in determining access. We already know that socio-economic differences are present in cancer survival, but this could be exacerbated if patients with lower socio-economic status are restricted from biomarker testing and access to new therapies, so we need to assess the size of this problem (if any).

What did we do about it?

To investigate this question, we carried out a new systematic review (reviewing the available high quality research evidence) using 58 previous studies showing information on over 1 million patients. Newer cancer drug access was compared between patients with a low to a high socio-economic status. The review looked at 7 cancers, 5 biomarker tests and 11 cancer therapies. The evidence showed that patients with a lower socio-economic status were 17% less likely to receive newer cancer treatments when compared to those patients with a higher socio-economic status. However, the strength of these differences did vary with cancer type, and were clearest in lung cancer. Similar differences were also seen in access to biomarker testing (often seen as a precondition for new cancer drug access).

Can we trust this evidence?

As 42 of the 58 studies were from the USA, more work is needed using UK data to see if similar patterns are observed here. Also, as studies used different measures of socio-economic status (i.e. some income, others education etc.), we need to be careful making conclusions in case the choice of measure used affects the strength of the findings.

What next?

Our review shows that we need more research questioning why factors such as income and education could still be affecting treatment access when clinical decisions should be guided by the patient and tumour genetics. It is important that whilst continuing the important research in developing new precision medicine and immunotherapies, we work to ensure fair access to all patients regardless of socio-economic differences.

Take home points

• Cancer treatment is now guided by genetics and new cancer drugs can help personalise care.
• Having a low socio-economic status can reduce the likelihood of receiving a newer cancer drug and the test linked to your eligibility for the new drug. 
• We need more UK based research to investigate these differences, to ensure fair access and reduce differences in cancer outcomes.

Read the research paper published today: Are there socio-economic inequalities in utilization of predictive biomarker tests and biological and precision therapies for cancer? A systematic review and meta-analysis

Are COVID-19 school guidelines adversely impacting teenagers’ diets?

Posted by Kelly Rose, Graduate Tutor/PhD researcher at Teesside University

As a mum, a registered nutritionist and former schoolteacher, you may imagine where my focus has been in the past few months, during school closures and schools returning. Although, I felt blessed that my girls were home and safe, and we could enjoy time together, with enough food. My daily thoughts did include a darkness, thinking of those teenagers I knew who would not be having a nourishing, happy family life during the lockdown.

In the past two years of my PhD studies, I have discovered that political change, how well policy is implemented and willingness and capacity of headteachers to prioritise healthy food, all have a bearing on how successful school food is provided. In short: school food is a really important factor in the quality of a young person’s diet.

The pandemic is highlighting inequities and raising awareness of school lunches

Over the summer a coalition of organisations formed to tackle food poverty as part of the national food strategy [1,2]. Premier league footballer Marcus Rashford shared his own childhood experiences at the forefront of a campaign calling for free school meals to food insecure children. During the UK lockdown five million families were reported to be experiencing food scarcity, hunger and or issues with accessing enough food, with 3.2 million – that’s 11% of households! – suffering food insecurity.

Parents and young people in the UK have expressed their agreement that healthier diet is more important than ever and would like to see positive change as a result of the pandemic [3,4]. And a significant number of parents want their children to not only learn about nutrition and develop cooking skills in school, but also to have a healthy school lunch [2,3].

Back to school

As my daughter prepared to return to year 11, her school was providing regular updates on the changes they had made in adhering to the COVID-19 guidelines, it was clear that they were working hard to help pupils feel better about returning. Then, a menu came through – oh dear. My heart dropped as I saw three images on the page. A white bacon roll, a white bread sandwich and a pizza slice featured in colour… 

Many children are choosing to take in a packed lunch, but given the evidence over the past decade, the nutritional value may be even more of a concern [5,6]. However, it is also often socially unacceptable to bring in food from home for older teens in years 10 and 11. My school contacts have raised concerns about providing the same food services that they did before COVID, including the logistical challenge of keeping year groups separate in addition to the high levels of hygiene required. This has led some schools to significantly reduce the time that pupils have to eat. These changes may be hampering the ability of schools to serve healthy foods. 

Schools are absolutely an ideal environment to support and shape healthy habits for young people. But, are the expectations for schools to nourish young people, provide comprehensive health education, on top of the academic priorities too much especially in a global pandemic? With the restrictions of the COVID-19 regulations, how can nutrition remain a priority? And what about the existing national school food standards [7].

Is this a national issue?

I want to find out if my experience locally is mirrored nationally. As part of my PhD research I have developed a short questionnaire for students (16-18 year olds), parents of 11-18 year olds, and staff involved in education to complete.

Your help with this important investigation would be very much appreciated. Please complete the survey if you meet the criteria as below, or share with others.

• A young person (aged 16-18 years) attending secondary school or post 16 education in UK
• Parent of a young person (aged 11-18 years) who is attending secondary school or post 16 education in UK 
• Staff employed in a secondary school or post 16 education in UK. 

COMPLETE THE SURVEY HERE



References:

1. National food strategy part 1 – Recommendations in full: https://www.nationalfoodstrategy.org/wp-content/uploads/2020/08/8_NFS_Report_RecommedationsInFull.pdf
2. Sustain website: https://www.sustainweb.org/news/sep20-freeschoolmeals/
3. Covid-19 and Children’s Food: Parents’ Priorities for Building Back Better: https://www.sustainweb.org/resources/files/reports/Childrens_Food_Covid19_Briefing.pdf
4. Bite Back 2030:https://biteback2030.com/sites/default/files/2020-06/BB2030%20Covid-19%20Report%20V2%5B1%5D.pdf 
5. Spence, S., Delve, J., Stamp, E., Matthews, J.N., White, M. and Adamson, A.J., 2013. The impact of food and nutrient-based standards on primary school children’s lunch and total dietary intake: a natural experimental evaluation of government policy in England. PloS one, 8(10), p.e78298.
6. Evans, C.E.L., Greenwood, D.C., Thomas, J.D. and Cade, J.E., 2010. A cross-sectional survey of children's packed lunches in the UK: food-and nutrient-based results. Journal of Epidemiology & Community Health, 64(11), pp.977-983.
7. The Independent School Food Plan website: http://www.schoolfoodplan.com/

Only connect: social survival during lockdown

Posted by Mihirini Sirisena, Research Associate, Newcastle University 

During the time when stringent national lockdown measures were in place, I noticed a new habit I had picked up, whenever I was outdoors. Every time I crossed the road to make way for a fellow runner or a walker, I made an attempt to catch their eye to thank, say hello or at least smile. Smiling or saying hello had gained a new meaning for me. It meant that I established a sense of solidarity and therefore rebutted the slightest chance of offending the other through avoidance by crossing the road. I don’t think I was alone in feeling like this. I crossed paths with many who seemed keen to connect at some level, including one woman who pulled a mask out of her pocket as I approached, covered her mouth and said, “I hope we don’t have to do this for long.” Many would agree that one of most significant challenges brought on by the measures to control the spread of COVID-19 was lockdown, for not only did it curtail our movements, it compelled us to do something that we are incapable of doing as a species - staying away from each other.

Initially, as the news of the epidemic spread, so did the stories of our responses. These stories recorded an array of responses, ranging from stock-piling and racism to altruism, and expressions of fear, suspicion, insecurity in the face of uncertainty and looking for culprits to place blame. As the dust started settling, focus shifted ever so slightly to talking about the mental health costs of lockdown, specifically in relation to social isolation. Alongside this developed a repertoire of how we could stay connected.

One of the first things that appeared on social media when the UK government and mass media began speaking about social distancing was that it is not social but physical distancing that we needed to overcome the epidemic. The message did not become a tagline but in myriad ways, it was clear that we had started to pay heed and show that we are together though apart. We sort alternative ways to maintain connections through digital platforms, despite many of us - including myself - being previously cautious about social media. These are not new but during lockdown we turned to them with vigour, deploying the likes of Zoom, Skype, WhatsApp and Microsoft Teams as platforms to live both our professional and personal lives[1]. Even gaming was pointed out as an effective way of socialising during lockdown and an antidote to social isolation.

Along with the quick assertion of social media as the platform to maintain human connection followed the conviction that these platforms are capable of extending human connection. Movements such as ‘clap for carers’ which were initiated and marketed through social media, stood as evidence of this capacity. In celebrating the success of this capacity to reach and connect, which is largely facilitated through social media itself, we run the risk of creating a one-dimensional discourse or version of social connection during lockdown. For instance, placing emphasis on social media as a means of connecting allows less space to recognise the other creative and meaningful methods some of us turned to, such as letters in the post or checking in at the doorstep.

In addition, a less discussed aspect of social media is its use to brandish intolerance - arguably no different to times before COVID-19 - of those who were seen to have violated ‘lockdown rules’ by driving for exercise or those who were seen to have crossed ‘community boundaries’, however they were defined. Cyclists were a popular target of such diatribes[2]. Similar vindications were abundant when the UK government announced plans to open schools to certain pupils. A narrative that was underlying such vindications appeared to be one that called for the celebration of the nucleus social unit, which took different forms. At times, this unit was understood to be ‘family’ as in instances that called for parents to see the lockdown as an opportunity to connect and spend time with their children. At other times, it was the ‘community’ as in instances where residents wanted to protect their locality from visitors. 

Yet another layer worthy of consideration is the effects of recent developments, such as those that emerged during the second wave of COVID-19 related restrictions, where the public was encouraged to ‘snitch’ on neighbours, if they were thought to be flouting lockdown rules. At one level, these expose our convictions about who we connect with, under what conditions, at what level, in which ways and the modes and the media we resort to, to connect and disconnect. At another, they hint at far reaching implications for what we might come to see or mean by social connections. 

As researchers and practitioners, considering the different ways in which connections were made and maintained will be helpful in our efforts to support and improve collective as well as individual wellbeing. Most importantly, we need to consider the less discussed topic of complex realities of everyday life and how they impact upon the connections that we can and cannot make and, the ways in which they impinge upon our collective and personal wellbeing[3]. 

References:

1. Some suggest the rise in use of social media continues even as lockdown measures have begun to relax: https://thenextweb.com/growth-quarters/2020/07/21/everything-you-need-to-know-about-digital-use-around-the-world-in-july-2020/
2. See also: https://www.thesun.co.uk/news/11547977/cyclists-coronavirus-lockdown-social-distancing/ and https://www.bristolpost.co.uk/news/bristol-news/covidiot-cyclists-stay-home-spike-4083230
3. Particularly, in the period of time that followed the lockdown, popular discourses have begun to highlight ‘social connection’ as one of the positive developments that emerged during the lockdown. Such romantic notions of ‘connection’, which propose that it is 'not money nor fame that a good life needs but to be connected with the others,' tend to undermine the weight socio-economic realities of life have on individual as well as collective wellbeing. For instance, refer to Alain de Botton’s interview with Lauren Laverne on BBC Radio 6 (Aired on 27th August 2020) (https://www.bbc.co.uk/sounds/play/m000lyx0 from 2:08:45, last accessed on 07 September 2020).

Image 2: capture from the BBC news website, 26 April 2020, Coronavirus: Are cyclists being wrongly targeted during lockdown? By Alex Regan (https://www.bbc.co.uk/news/uk-england-derbyshire-52389245)