How do we improve diversity in research?

Posted by Vicki McGowan, Research Associate, Newcastle University

Public involvement and engagement in research is not a new concept. Without members of the public engaging with our work as participants, we would not have advanced our knowledge and understanding of the social world over the last few hundred years. More recently the Covid-19 vaccination would not have been so rapidly produced without generous support from the public in giving up their time (and bodily fluids) to advance our understanding. What seems to be a more relatively recent idea is the involvement of the public in developing the research itself and setting the agenda based on their experiences. Newer still is the idea that there should be a diversity of voices at the table where these decisions are made. In 2014 the Due North report made a series of recommendations to address inequalities between the North and South of England.

In order to take forward these recommendations academics across the North developed the Fuse led Equal North network which aimed to build a community of academics, policy makers, and practitioners across the region to work collaboratively on addressing the North-South health divide. This community came together in workshops to identify priorities for addressing this spatial inequality, and around 250 professional participants highlighted poverty, austerity, and unemployment as key research areas to ‘level up’ the northern regions (Addison et al, 2019).

Equal England academic and practitioner priority setting workshop hosted by Fuse

But, this was only one part of the story.

It was an important side of the story, and I’m sure many members of the public would agree that poverty, austerity, and unemployment were – and indeed are – priority topics, but we needed their perspectives to ensure we were developing research that addresses these drivers of inequality and doesn’t widen them further.

But also, we’d been talking about tackling inequality at the same time as maintaining unequal access to decision-making by not including all key stakeholders in the discussion. So, when the NIHR School for Public Health Research funded the expansion of Equal North to become Equal England, we increased our practitioner membership to over 800, but we also ensured that we could take forward recommendation 3 from Due North: 

“Share power over resources and increase the influence that the public has on how resources are used to improve the determinants of health”

The Equal England Public Network was born in late 2019. Following the practitioner model developed in Equal North, we aimed to create a space for members of the public to share lived experiences and influence the work that we do and undertake some public priority setting exercises to see how these align with the Equal North work. We’d also share information about key events, new evidence, and generally keep people updated with health inequalities research as we do the practitioner network.

That was the plan, now the action. How do you develop a diverse network to engage with members of the public with lived experience of poverty, austerity, and unemployment?

One option could be to contact the numerous, and brilliant, existing Public and Patient Involvement (PPI) groups that operate across the country. Why reinvent the wheel? If that wheel only comes in one style and doesn’t fit my bike then we may have a problem. These established groups might not accurately represent the diversity we see in our communities.

Also, these can be established groups that by their tenure already have the confidence and capacity to exert influence over research agendas and I wanted to make sure we had representation from people who don’t usually have their voices heard in the communities that are affected by the priority areas identified through Equal North.

To ensure we were accessible to a diversity of voices we aimed to pilot the network in North East England to build on the Equal North findings and implement three phases:

Phase 1: Connect with local grassroots groups that are embedded in their communities, promote the network at relevant community events, generally get out into communities across the North East and get to know people, develop trust and sign people up to our mailing list.

Phase 2: Invite members to a series of local conversations, present the findings from Equal North and discuss whether people thought these were important for their communities, whether there were other priorities, and what we needed to do to address them.

Phase 3: Co-develop research proposals around these priorities and dissemination activities with academics and practitioners – making sure the public experiences were disseminated widely and incorporated into future planning.

By February 2020, Phase 1 was going well with 35 members of the public signing up to the network. And then…

We were forced to cancel all face-to-face activities due to Covid-19. The country shut down and the vast majority of people I’d engaged with over the past few months were now focused on supporting their communities through the crisis.

People are furloughed and so volunteer at food banks, people lose their jobs, they lose loved ones to the virus, the grassroots level is not interested in me trying to encourage them online to talk about inequalities that PRE-EXISTED the virus and are now being made even worse. The public network gets locked down and we pause activity thinking it won’t be long before we’re back chatting over coffee.

A year later and we’re still not able to get together in person and our coffees are stone cold! However, during this time of crisis I focused on maintaining the network rather than trying to grow it. I kept in contact with our members via the mailing list and shared opportunities for engagement and to participate in, and develop, research. It didn’t seem right to actively pursue growth during a pandemic but, as our members represent wider groups within their communities, they have shared these opportunities and this has resulted in more members of the public signing up. We now have 57 official members from across the country who have been supporting and influencing the work we do. Amazingly during a pandemic, our public partners have supported the development of several health inequalities projects, contributed to covid-related inequalities research and influenced decisions over national priority funding around inequalities and prevention from the NIHR Applied Research Collaboration (ARC).

Key messages for ensuring diversity in research 

Identify trusted partners

Engage with your existing networks but identify people who are already trusted in their community. These people are probably the most important, whether we’re in a Covid or non-Covid world. Find them and work with them. Approach grassroots organisations, church leaders, sports groups, charities, hang out in coffee shops, community centres, pubs (when permitted!).

Actively seek out diverse groups

Don’t assume members of diverse groups will respond to your advert on Twitter, you must actively engage with groups and organisations that represent marginalised communities. If you’re unsure use tools like PROGRESS+ and HIAT as a guide to check you’re providing equity of access for members of diverse communities (these consider ethnicity, LGBT+, rural/urban, age, disability, economic disadvantage etc.).

Boots on the ground

Leave the comfort of your (home) office! Opportunity does not knock at your door, you need to go out and seek it. Pre-Covid this means being present in community spaces, libraries, coffee shops, markets and schools. During Covid this means using existing networks, online sessions, and setting up WhatsApp groups.

Give something back

Always give something back, that may be reimbursing people for their time or providing opportunities for training and skills sharing – and here I don’t just mean assuming we have skills that they want, perhaps members of the community want to share their skills with us. Develop reciprocal relationships, don’t just take from communities to boost your career!

Be patient

Developing trusted, meaningful, and reciprocal relationships takes time. Be patient. Do not underestimate how long it can take – I’ve been working with some groups for 6 years!

Manage expectations

But if you don’t have 6 years, be honest with people that your work is time sensitive and clearly articulate what you need and how people will be reimbursed if they’re able to help you. Don’t promise the moon on a stick if you can’t deliver!

Finally, blogs are also a great way to connect with diverse groups so don’t forget to add some shameless promotion: if you’re a member of the public reading this and would be interested in joining our network you can sign up here.

For more information about the development of the network, and other experiences of improving diversity in research, you can view a recording below of a recent joint NIHR School for Public Health Research / School for Primary Care Research webinar.

From school dinners to sugar tax: Jamie Oliver to the rescue!

Guest post by Dr Victora J. McGowan, Research Associate, Teesside University

I have to say thanks to Jamie Oliver, the media attention from his School Dinners programme led to research questions which went on to form my PhD project (the effect of school meal legislation on child malnourishment). After completing my PhD I thought that would be the end to my connection with the celebrity chef, little did I know that our paths would cross again a few years later. I began work at Teesside University in October 2014 charged with conducting a systematic review into the effects of fiscal strategies on sugar consumption in collaboration with Public Health England (PHE). PHE had recently published 'Sugar reduction: responding to the challenge' which outlined the work they would undertake to assess the evidence base and identify potential areas that would be effective in reducing sugar consumption.

While we were busy searching through over seven thousand research papers the media were just as diligent in searching for almost anyone (including me) to provide information on whether the government would introduce a sugar tax. As we inched closer to the final number of relevant studies which we’d include in our review, Jamie Oliver waded into the debate. I admire the way he uses his celebrity status to push a healthy food agenda, however, I’m often left thinking whether his involvement does more damage than good. In terms of school food, I interviewed school cooks who said his School Dinners series resulted in an almost immediate decline in children taking a school meal. Some might say this was a good thing if the food was as bad as Jamie portrayed it. Well, it wasn’t that bad everywhere and this reduction in school meal uptake had a detrimental effect on the cooks as their salary was based on the number of children taking a school lunch. So when he entered the debate on a sugar tax it made me nervous. Jamie was branded a "patronising bully" by Alex Deane Executive Board Member of the People Against Sugar Tax campaign and tory MP Andrew Percy said Jamie’s suggestion of a sugar tax was "a classic nanny state reaction and it won’t work". I truly believe Jamie means well but his celebrity status often clouds the evidence and can result in detrimental consequences.

As we were in the process of finalising our review of the evidence, a total of 11 published studies, Jamie’s sugar tax campaign was gathering momentum with an online petition to have the issue debated in parliament and a new series being aired, Sugar Rush. Jamie wasn’t alone in his campaign, groups such as Action on Sugar and the Children’s Food Campaign, had been pushing for a tax long before Jamie came along, however, the addition of one more cook had the potential to spoil the broth. The authors of the School Food Plan, John Vincent and Henry Dimbleby have also advocated the introduction of a sugar tax and already introduced a 10p levy on sugar sweetened drinks in their LEON restaurants. However, with great celebrity status comes great responsibility. A recent article by Sian Griffiths discussed how the proceeds from these unofficial sugar taxes could be used to pay for drinking fountains in public parks with the view that it may help children access free drinking water rather than purchase sugary drinks. A novel idea but would it work? I asked John Vincent on Twitter whether kids would use these drinking fountains, he hasn't responded.

Before the ink had dried on our final copy reviewing the scientific evidence, Jamie Oliver et al had already decided that a sugar tax would reduce consumption and the government must take action. When PHE published Sugar reduction: evidence to action (see annexe 2 for our fiscal review) in October 2015 it almost seemed like closing the barn door after the horse had bolted. The media furore around the topic was so great that articles were too busy calling Jamie names and telling readers it was nanny state gone mad to pay any attention to the evidence. Our review of the evidence, although based on a small number of studies, suggested that consumers are responsive to changes in food and drink prices and this supports the evidence from modelling studies which indicate a tax of 10-20% would have a significant impact on purchases. Moreover, recent evidence from Mexico has shown that purchases of sugar sweetened drinks declined by up to 12% after the introduction of a sugar tax.

The evidence collated by PHE indicates that a sugar tax could have an impact on population health if implemented alongside a range of other strategies such as reducing marketing exposure and price promotions on high sugar products (we also reviewed the marketing evidence see annexe 3). However, this seems to have been diluted by the media whose attention has been focused on taxation. There are benefits to celebrity chefs wading into the public health arena as they can help bring some attention to important issues. However, I think they need to be mindful that their high media profile could have negative consequences. Parents, children, and school meal staff did not take too kindly to Jamie “transforming” school lunches and the skewed media attention on a sugar tax has the potential to undermine the evidence base before any attempts are made to implement a potentially beneficial health policy.

Animation designers... a day in the life of a researcher (part 2)

Guest post by Dr Victoria McGowan, Research Associate, Alcohol and Public Health, Teesside University, @teamalphatees

Team Alpha recently spent a few days with Arcus Animation Studios and we were joined again by our two young people, Megan and Glen, from local schools who have been helping us develop the animation which introduces our SIPS JR HIGH study to participants. Arcus designed and produced our 2D cartoon animation and kindly let us into their studios for a behind the scenes peek at how they work. Here are some reflections on how it went:

The team at Arcus were so welcoming and introduced us all into their creative world. Megan and Glen were shown how animations are developed and given tutorials on using various different graphic design software and tools, such as the graphic tablet. Team Alpha spent time admiring their work environment (an Aladdin’s cave of toys, games consoles and a miniature Star Wars AT-AT Walker) and were eager to join in the weekly Street Fighter competition held in their fantastic common room.

The animation team at Arcus

While Team Alpha were reliving their youth, Megan (centre above) and Glen were hard at work developing animation characters and storyboards. On day two Megan was interviewed by Arcus and described how her passion for graphic design influenced her decision to assist us in the development of our SIPS JR HIGH animation.

She said: “I have been helping Teesside University in terms of creativity and research for the animation. The reason for this is because I am interested in graphic design myself and would love to get involved in some experience and voluntary work with animation and design companies”

The experiences of Megan highlights the benefits of participant involvement in the development of research, not only to the study, but also to the individuals. Megan and Glen were able to gain experience of working in an animation studio and see first-hand what a career in this area would be like.

“I like how the job will include drawing, animation and creativity. It also inspires me to be myself and not to follow instructions of what to do as part of designing something. I also like how you can design your office to what you like and enjoy, I think that it’s good for people to express their likes of designing and working with people that have the same interests as you”

Megan was very grateful for the opportunity to spend time with Arcus, this gave her insight into the life of an animation designer and gave her confidence to continue pursuing this career.

“I think Arcus has been very useful and they have given me ideas for further experiences and other work that I will be doing. They have given me a warm welcome into their company and also took me through tutorials of how their programs work and what they do to build up an animation. I have enjoyed my time at Arcus and the people here are very nice and outgoing! They each have their own personality which I like and they all have a story behind how they have achieved what they have done to become an animation designer.

Thank you Arcus!”

Dry January works for many. I'm going binge-free all year round

Guest post by Dr Victoria McGowan, Research Associate, Alcohol and Public Health Team, Teesside University, @teamalphatees

New Year’s Eve is celebrated around the world and New Year’s Day follows with many debilitating hangovers. In my case this is made so much worse as a close friend’s birthday is on 30 December, so on New Year’s Eve I’m usually nursing a hangover and wondering how I’ll conform to social convention and partake in more alcohol consumption while waiting for the clocks to strike midnight. I always manage. Taking a look at Professor Newbury-Birch’s post from November 2015 I will hold my hands up and tell you over those two nights I binge drink, every year.

About five years ago my friend and I sat in my back garden in an inebriated state and discussed how terrible we’d feel in the morning and that we should, and could, spend a whole month off the booze. I wasn’t aware of any dry January campaigns at the time and according to Wikipedia “Dry January” was registered as a trademark by Alcohol Concern in 2014, so my friend and I were ahead of the game. At the time I thought it would be quite difficult to spend a whole month booze free but I found it surprisingly easy. Although, I often go weeks without consuming alcohol so perhaps abstinence for a month wasn’t a great stretch from my normal consumption patterns. My friend made it until 30 January before she succumbed to social convention when we went out to see a band. But still, 30 days out of 31 is close enough.

Abstaining from alcohol couldn’t happen at a better time in the year, our purses tend to be a little lighter and our waistbands a little tighter so it’s a win-win situation saving £s and shaving lbs, by swapping the wine for water. But also, according to the New Scientist, dry January can have beneficial effects on your liver, and NHS Choices say it can lead to healthier long-term drinking patterns. So if it’s so good for us and it’s only one month out of 12 why am I never doing it again? Because dry January would be easy for me, I do it often without thinking and I have done it successfully in the past. What I would find challenging is consuming the recommended daily units for a woman on the occasions I do drink alcohol. This equates to 3 units (three small glasses of wine) as opposed to the 18 (two bottles of wine) I consumed at the end of 2015. I might abstain from alcohol a month at a time but drinking a whole bottle of wine in one sitting puts me above recommended daily limits. Dry January is a great idea but one booze free month cannot outweigh 11 months of 9 units even if they only happen once a month. A similar argument has been made by other writers, including a recent paper in the British Medical Journal by Ian Hamilton titled: Could campaigns like Dry January do more harm than good?

So instead of taking part in dry January this year I’m attempting binge-free moderate-months by being aware of, and trying to stick to, the recommended daily limits on the occasions when I consume alcohol.

What do you think about Dry January? Post your comments below.

Who needs nudging, shoving, and shaming? Individuals or government?

Guest post by Victoria McGowan, Post-Doctoral Research Associate at Teesside Uni, Alcohol & Public Health Research Team

I recently attended International Society for Behavioural Nutrition and Physical Activity (ISBNPA) conference in Edinburgh (see #ISBNPA2015 on twitter). The conference was a great event and I’m very grateful to Teesside University for supporting my attendance.

Conferences have a tendency to be sedentary affairs and can often have limited opportunities for physical activity or even just standing during sessions. However, I was delighted to see that the conference organisers had marked out significant space for standing during sessions. Not only that, but there was the opportunity for yoga and health walks early every morning as well as lessons in ceilidh dancing at lunch time and a walk to Arthur’s Seat as part of the social programme. It was quite a physically active, physical activity conference.

Lunch time ceilidh dancing

However, there were some interesting discussions about whether us delegates were being socially shamed or nudged into partaking in physical activity during the conference. The conference opened with Professor Nanette Mutrie describing how she’d spotted one of her own researchers using the escalator as opposed to the stairs and encouraged delegates to give standing ovations to all speakers in an attempt to get us on our feet more. Although I found the level of physical activity on offer a refreshing change from being largely sedentary, I was slightly unnerved about the underlying social shaming.

I’m a strong advocate for informed choice, I love posters on stairs telling me how many calories I’ll burn by walking up them but I also love having the option of taking the escalator. There were stories of academics taking photos of people using the escalator to shame them for not using the stairs. It was interesting to watch the Mexican wave of delegates standing to applaud, a few individuals would stand and then row after row behind them followed suit… until it came to me and I would sit in defiance. Why did I stay seated? Because I have a choice and honestly, I don’t like being socially shamed into doing something. Yes, I agree obesity, nutrition, and physical activity researchers should not be hypocritical and practice what they preach. However, we also need to be mindful that we’re working with people who are more concerned about paying their rent, whether their children need new school shoes, zero hours contracts, whether they can get an appointment with their GP, the list goes on. Yes, taking the stairs may improve our health if we use them regularly but we have to understand that some individuals choose the unhealthier option due to a whole host of external pressures. Lecturing these individuals about taking the stairs may fall on deaf ears or, as in my case, may lead to defiance. I used the escalator on occasion because it was quicker for me to walk up/down the escalator to dash between sessions and avoid the crammed stairs.

There are other reasons why individuals choose the less healthy option and we need to understand these external pressures rather than shaming people into taking the stairs. As Professor Alan Batterham rightly pointed out in his debate with Professor Stuart Biddle we’re evolutionary predisposed to conserve energy whenever possible so sometimes we may choose the escalator. However, we may choose the stairs if we’re provided with information on why it’s good for our health, or if we alter the environment to make healthy choices easier. But please don’t shame us into choosing one option or the other as this could lead to unintentional detrimental consequences of purposeful rebellion. Yes, I’m aware of the obesity ‘epidemic’, but I’m also aware this is caused by factors which are outside of individual control. Professors Ted Schrecker and Clare Bambra’s book How Politics Makes Us Sick shows how the rise in neoliberal policies in the UK and US are associated with rises in obesity and health inequalities.

Inequalities are having the greatest impact on health

Kylie Ball highlighted this point at the end of her keynote speech, yes we need to help improve nutrition and physical activity BUT we also need to help reduce inequalities in nutrition and physical activity. Inequalities are having the greatest impact on the nation’s health, not occasionally taking the escalator.

It’s time to nudge, shove, and shame our government, not individuals, into reducing health inequalities and improving overall public health.

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