Clinical Research Networks recruit participants for NHS clinical research projects, and Stephen Lock looks at ways to use technology to improve this process. He explores ways that a better use of technology can lead to patient-centred research delivery models.
The Open Lab team headed to Harissa Mediterranean Kitchen in Sandyford, Newcastle for a design workshop based around community engagement and the links between social inequality and access to healthy eating options
For more information please contact Emma Simpson.
With Ko-Le Chen, I am exploring different ways of disseminating academic research. Inflatable is a performance we exhibited at the Newbridge Gallery in Newcastle, retelling a piece of my research with young people which explored gender, sexuality and identity through the medium of inflatable dolls.
For more information please contact Matt Wood.
This year, Newcastle University held the annual Digital Economy Network (DEN) summer school, which brought together early-stage researchers from ten national universities who collectively contribute research towards the digital economy.
Having these researchers in one place provided an opportunity to capture their unique, yet shared experiences of being involved as a researcher in this network. However, current methods to support qualitative data collection are often led by researchers in a formal way (e.g. interviews and focus groups) or do not leverage the potential of digital technologies (national surveys), which are often time consuming to conduct at scale.
Around the same time, I was undertaking research to explore new ways to utilize technologies to simplify the process of qualitative data collection. During which I developed Gabber, a mobile application (yes, another app for research) to capture conversations between peers using topics to scaffold conversations that they have experiences of and to publically share these for others to hear – perfect timing for a trial deployment at the DEN.
Gabber has three stages to streamline this: (1) the interviewer inputs their friend’s details, including an optional photo/selfie if they desire, (2) they agree on and select a topic they want to discuss, and (3) they record and save the Gabber.
Gabber’s unique characteristics are its incorporation and combination of traditional qualitative research methods within technologies to examine their joint effectiveness. Peer-led interviewing was used to capture conversations between users, snowball recruitment was used to diversify and increase the spread of participation across social circles, and a process of consent through follow-up emails with participants was used to give authority and transparency over the data they jointly created.
Researching the researchers
Gabber was used at the DEN to capture the shared experiences of being a researcher by attendees, but what topics should be discussed, and who decides on these? Users should have control, and so prior to the event attendees were emailed and asked to propose topics that they would enjoy having conversations about. The most common responses were used and reduced to open-ended questions to elicit a breadth of discussions and ranged from: “what inspires your research” to “advice for new CDTs”.
Given the crammed nature a summer school program, is there really enough time to have a gabber? Over the two-day event, fourteen gabbers were recorded by attendees from eight national universities, with a majority choosing to discuss their research inspirations and family’s perceptions of their research.
Full consent to share the gabber created and to associate the optional photo was provided by all participants. This was surprising as a current challenge faced by citizens who contribute to or are involved in research is the attribution of the data they produce, and how they provide consent as the research project evolves. Gabber demonstrated the potential role of technologies to explore these challenges and to alleviate pressures facing researchers in these areas.
Gabber could be configured and used by researchers to rapidly collect perspectives from their participants, or by citizens to collect data for their own shared agendas, such as informing local policy.
This exploration into the role of digital tools to support and modernise qualitative research is an emerging interest of my own, which will involve further research and technology innovation. If you’re interested in collaborating or discussing how such technologies could benefit your work, then get in touch.
For more information please contact Jay Rainey.
I spent two months in rural Lebanon working with Syrian refugee women residing in an informal tented settlement. We were working on using an IVR system to access healthcare services and increase refugee agency in the healthcare provider/refugee relationship.
While the results of the research were very interesting, there is more to research than just the results. Rarely do we report on the intricate, and sometimes fragile, nature of the relationships we build with the communities we work with. We also leave out in our papers conversations around “What does it mean to be embedded within a community?”.
So I will take to blogging to document all that happened!
One of the things that hits you when you first start engaging with such resource constrained communities is the need to find a balance between respecting their customs without becoming an added strain on their already limited finances. These families are earning way below the poverty line yet their customs entail offering food and beverages to their guests. So to pre-empt that I took food with me for all of us to share and water and juice.
Despite that they would still offer me and all the other women participating drinks. I would refuse, saying, “I will drink from the juice I got for all of us”, which was fine at the start, although the woman hosting me did say to me once, “are you worried our glasses are not clean?”.
I won’t lie, I was mad at myself for making her feel that way and then quickly explained to her in a culturally appropriate way that I do not want to be drinking from the beverages that she had bought for her children. She appreciated that but insisted that I drink something.
I then altered my approach. I would drink from the beverages she offers me and give the beverages I had bought to her at the end of the day. It is these small incidents that can sometimes break the trust and familiarity that you as a researcher had spent so much effort building with the community.
Similarly, the experience made me really reflect on where to draw the line when it comes to my health. During my initial engagements with the women they explained to me how they are all suffering from chronic diarrhoea and it is because the water they have isn’t clean. So when they would offer me drinks I would only drink juice, thinking that that would be the safer option. However, I soon realized, after getting sick several times, that in order to make the amount of juice enough for everyone they would dilute it with water.
I did not want to insult the host again.
I discussed it with a colleague, who has worked in similar circumstances, and she said the answer is tea because that way the water in my beverage would be boiled. Drinking hot tea in the heat of a Lebanese summer was not ideal, but it seemed to do the trick.
Research as real life
These are only some of the things I encountered while doing my field work. It is these things that we need to talk about as researchers working in such circumstances. No amount of reading can prepare you for embedding yourself within refugee communities. However, sharing our experiences may at least help researchers prepare for such engagements.
For more information please contact Reem Talhouk.
Doing research is difficult, and no amount of training is going to prepare us for every single potential ethical question or incident in the field. While applying for ethics approval from the university is supposed to help you think about potential issues that may arise in your research, they don’t always make you think about all the little details, the small things that can happen when doing fieldwork.
When looking at ethics as a constant conversation you are having with yourself, your supervisors, your colleagues, and maybe even the ethics board, it helps you address these conundrums that come up through the process; the invisible questions.
These conversations are hard to have with colleagues or supervisors, let alone the official ethics board of the institution, as many of the issues that come up may be very personal and complex. On top of this, it seems to be that safe, judgement free spaces to talk about these types of issues openly are also sometimes lacking.
A difficult topic to talk about
To address this issue, three PhD researchers from HighWire Centre for Doctoral Training Centre at Lancaster University and Centre for Doctoral Training in Digital Civics at Newcastle University put together a workshop for other PhD researchers studying in Centres for Doctoral Training (CDTs) within the Digital Economy Network (DEN) at the annual DEN summer school – this year hosted by Open Lab at Newcastle University in July 2016.
This workshop was an opportunity for researchers to have a safe space to address any ethical questions, conundrums, or concerns that they may have come across in their work so far, or are worried they may come across in any of their future work.
Since we knew this was going to be a difficult topic to talk about, we addressed the topic in a serious, but fun and creative way: we built a city of ethical conundrums.
Using ideas from anarchist and critical pedagogies where embodiment, creativity, reflexivity, communication, and collaboration are important, we came up with the idea of creating a common language among participants to talk about these personal concerns.
The workshop started with a short activity to get to know one another, and a longer conversation on the importance of safe spaces including how we were going to make sure our workshop was a safe space. After this, there was a short period of individual reflection where participants created unique pieces of art to represent their own ethical concerns in silence. After sharing these with the rest of the group, the building of the city began.
Starting with simple language and concerns, we used black building blocks and markers to document the conversations that came out of the individual presentations. To address invisible issues that arise throughout the research process we added little clay ghosts, and to further complicate the conversations we ended up building in some Lego figurines to populate our city of ethical conundrums. After all these conversations, we tied balloons to the ghosts and came up with strategies of addressing these invisible issues.
Learning from one another’s concerns
At the end of the day, we ceremoniously popped these balloons to let the glitter that had been filled in them fall onto the hostile-looking city we had built throughout the day. This made the city prettier and shinier, adding to the metaphor: while the kind of research we are doing in sensitive settings is difficult and at times may look hostile, when we talk about and address these concerns the research will be less hostile and more beautiful.
This workshop helped us learn from one another’s concerns and allowed us to address many difficult issues in a safe environment. It was a great opportunity to exchange experiences, reflect on ethical implications of previous, current, and future projects, and to engage in discussions around these concerns. We were able to map commonalities between the different research projects we discussed in the workshop, and to see that while all participants were working in very different environments, many of the ethical concerns appeared in all of our work.
The safe space we created through the workshop allowed us to address both very detailed and unique concerns, but also broader ethical issues we see in academic research as a whole.
One of the projects Open Lab is working on at the moment is an engagement with Nexus, who operate the Tyne & Wear Metro service. In order to scope some of our research activities, we recently headed out to explore the system ourselves.
Our day-long adventure on the Newcastle-Upon-Tyne Metro saw me taking on the persona of Patricia, a 67-year old lady who was a new arrival to the city. Patricia and I have that in common – I’d just moved to the city less than two months previously, and so when I read my persona card for Patricia, her jaunts to the museum, shopping and coffee in the centre of town, it rang pretty true for me. Coupled with my background of working with older people, I felt right at home, though I also made sure to speak to people I met along the way.
Seeing Metro journeys through new eyes
I worked with Simon Bowen, whose persona that day was of a dad with young kids, and we boarded at Monument to begin our journey east towards the sea, where I lived and where Simon was visiting with his kids.
We got off at Byker to have a poke around the station. As Simon imagined the dangers the outside roads posed for his imaginary kids, I engaged the two attendants at the ticket gates.
I asked them about their experience with older people throughout the Metro stations. They reported the escalators as dangerous for some older people, who may often be commuting alone to carry out their shopping and for whom the combination of steep, moving steps and heavy bags poses a challenge.
The gates themselves, they explained, could be difficult as well – for some older people, the ticketing system was confusing, and barring that, the gates themselves were problematic. Sometimes they just didn’t work, they said, and demonstrated by passing a staff card multiple times over a nearby sensor to no response from the system. This seemed to be a bone of contention, as were the ‘jumpers’ who would vault themselves over the gates, often in full view of attendants.
“It’s like Cheltenham around here,” said one of the attendants.
I’d seen this happen a few times and it can contribute to a slight sense of danger in the stations, which are often dark and unmanned at night-time. Beyond this, the existence of petty, low-level incidents like this can have a serious impact on the experience of older people around the Metro system. At North Shields, I spoke to a lady whose experience travelling home on the Metro one night was marred by abuse from a group of young boys.
“They had a sharp knife … and were slashing up the seats. They were only about 12.”
She scolded them, and they turned on her, shouting abuse and threats. She thought the other passengers would stand up for her, but they weren’t interested. Once she reached her home station, she disembarked only for the boys to follow her, shouting, all the way to her house.
She must have been very frightened, and indeed she said she modified her journey after this so that she would not have to take the Metro at night. A pity, as one of the reasons she had moved to the house she lived in now was because of its proximity to the Metro.
From the perspective of people with dementia and their carers – my particular research area – the scarcity of toilets and the lack of clarity surrounding where they actually might be was a problem. Beyond this, although staff at the barriers were kind, funny and helpful, I was unsure as to how they would react to a person with dementia who couldn’t operate the gate, or a carer who needed help finding a way down to the platform.
Of course, there were upsides to the experiences of older people on the Metro as well. As we travelled back to Monument, I sat down with a group of three sisters, all retired, who spoke about using the Metro to explore areas around the city where they have rarely visited. All three spoke about how the Metro allowed them to explore and make the most out of days together, even if it just meant getting a coffee in a nice café in Sunderland, or going for a walk along the beachfront at Tynemouth.
It’s easy to consider the negatives of the Metro system, especially from the perspective of older people – the dangers, the confusion, problems with accessibility – and indeed these gaps are where we should start our work to ensure the Metro is safe and open to all.
However, what I also encountered on my day on the Metro was a sense of ownership and civic pride in the system – it broadened horizons, connected families, and was an opportunity to sit down, read a book and have a coffee on the way out to the seaside or in to the shops. The people I spoke to felt like they travelled on “our” Metro – of course, it is theirs, which is why it’s imperative to engage diverse citizens like this before important design decisions are made.
For more information please contact Simon Bowen.