CIRU & COVID-19 Summary

CIRU & COVID-19

Summary on projects related to the pandemic

CIRU was involved in several projects related to COVID-19 which resulted in The Commonwealth Innovation listing the University of Southampton (UoS) as experts in relation to the coronavirus and included some of our team members as leading experts. More details on how our department contributed towards COVID-19 research and provided support is shared below:

The EDGE Programme: The EDGE Knowledge team worked closely with hospitals across the UK and abroad to support them in managing their research portfolio and specifically COVID-19 research. A large number of trials were suspended whilst hospitals re-organised the delivery of their services, ensuring research continues to be delivered safely. The impact COVID-19 has had on the ability of everyone to safely carry out their role in research led to numerous requests to the team to support and develop functions, including remote monitoring, which gave a great deal of support to EDGE users throughout the pandemic.

COVID-19 Saliva Testing Programme: Members of CIRU including the Head of Development David Miller, Data Analyst Pat Oxford, KITE’s Programmer Bart Feenstra, as well as our Director, Professor James Batchelor, worked on a COVID-19 Saliva Testing Programme along with other UoS staff and colleagues from University Hospitals Southampton NHS Foundation Trust (UHS). CIRU’s involvement included the build of the online test registration site for participants, data visualization, as well as programme reporting. The programme has involved tens of thousands of participants and won the VC Public Good award.  

RESIN - Research Investments in Global Health Service: Dr Michael Head, Senior Research Fellow in Global Health from our RESIN team, provided significant expert commentary to the general public throughout the pandemic. He was interviewed on numerous local and national news, including several interviews with the BBC, as well as on international TV and radio stations. Dr Head’s written quotes appeared in all the major UK newspapers and hundreds of international media articles. Through the Research Investments in Global Health study, Dr Head and colleagues have generated data on historical levels of coronavirus R&D funding. This data has been presented at WHO headquarters in Geneva and incorporated into a scientific paper that was later published. More info on RESIN’s contribution can be found here.

CORE - Clinical On-demand Research: The CORE team completed a COVID-19 POC observational study using ALEA eCRF, in which they record lots of data such as medical history, medications, bloods, vital signs, NEWS2 score, screening for 20 odd pathogens (QIAstat) and recording what treatment patients have been given and length of stay, with particular interest in affected health workers.

AXIS - Access Extract Integrate Safe Data: The AXIS team worked alongside colleagues from UHS to meet the need of integrating more technology-based solutions to share data and insights to help solve the global challenge. The teams worked on data integration and analysed real-time clinical information in order to understand high level clinical risk stratification and monitor the progression in COVID-19 patients.

The Commonwealth Centre for Digital Health: The team of Digital Health Fellows from Sri Lanka who form part of the Commonwealth Centre for Digital Health, along with CIRU Director Professor James Batchelor and Professor Jo Nurse, launched an online platform where digital health solutions can be re-used and offer support during the crisis. It also helped to form better collaborations among digital health solution partners and other agencies.

CIRU's Ukrainian Electronic Health Needs Survey

CIRU’s Ukrainian

Electronic Health Needs Survey

Some of you might already know that EDGE belongs to the University of Southampton’s department: The Clinical Informatics Research Unit (CIRU). From time to time we like to share other news and projects that happen within the unit, just so people can learn more about CIRU and what we are all about. A really important piece of research that is currently taking place is the Ukrainian Electronic Health Needs survey, that colleagues from CIRU are leading on, along with another University of Southampton department, The Centre for Population Change (CPC).

CIRU’s Senior Research Fellow Dr Michael Head and Research and Insight Analyst Dr Ken Brackstone launched the survey, ‘Health Needs Survey for Ukrainian displaced persons and refugees’ on 18th April 2022 and as of the 19th of May, over 6300 participants have completed the survey and the data is ongoing.

The research survey is aimed at residents of Ukraine, who have fled the country or are displaced but still within Ukraine. The purpose of this research is to find out the current health concerns and issues of the refugee and displaced populations. The survey asks questions that include what access the participants have to healthcare, vaccination against COVID-19, access to essential medicines as well as to sanitary products, and oral, skin and eye health. The intended outcome is that the results can support decision-making on issues such as logistics and healthcare needs, as well as improve on the quality of life and care of the Ukrainian population.

The findings are being disseminated to humanitarian and health stakeholders to support their response in helping these vulnerable groups.

Below is a quote from Dr Michael Head, Senior Research Fellow, who is leading on this piece of research at CIRU:

“With any conflict, there are a huge number of urgent knowledge gaps. This study can support the humanitarian response by provide information on population movement and health needs in real-time”

For further information, visit CIRU’s webpage here.

Me, myself & surveys

Me, myself & surveys

By Dr Ken Brackstone, CIRU Research & Insight Analyst

Over the years, I have acquired somewhat of a reputation amongst my colleagues at the Clinical Informatics Research Unit (CIRU) for being “mildly” obsessed with designing and running online surveys. Erm, I’ll have you know that I do not have a foggiest idea how this rumour could have started…

*Ahem*

Oh, alright - running surveys ARE my favourite part of my job. There aren’t (too) many things more thrilling than utilising surveys to answer complex research questions and contribute to important knowledge gaps in the world. Knowledge is power, after all, and the rich knowledge that you can obtain from surveys contain potential for subtle waves of impact if you know what to ask and how to package your findings. Hint: Ideally with a little red ribbon on top!

My passion for designing surveys began during my 3-year PhD in social psychology, which I completed at the University of Southampton in 2015. It was during this period that my love for running surveys developed, which was a direct result of designing and implementing surveys on thousands of participants in the laboratory and online. My PhD focused on understanding the power of nostalgia – specifically, how nostalgia can be effectively used to “fend off” the harmful effects of loneliness. After manipulating loneliness and making people feel nostalgic in the lab (using sophisticated survey designs – such fun), it turns out that nostalgia is pretty good for you. Feeling disconnected from those around you? Whack on a bit of Spice Girls (or whatever floats your boat) and you’ll soon replenish those feelings of connection.

I joined CIRU shortly after finishing my PhD to work on a clinical pilot project – this was back when there were just 14 people employed in the group. I was the first and original academic in the unit, which, at the time, predominantly focused on EDGE, our clinical trials management programme. The department was vastly different back then compared to present day… in case you didn’t know, CIRU currently employs over 50 staff and is home to a variety of different service and research groups. I remember a few months after joining, I announced to the team that I had intended to trial the unit’s first ever survey administered on our EDGE users – titled “The EDGE Usability Survey”. “What did users really think of EDGE?” I set out to ask.

*Cue lots of worried looks amongst my colleagues’ faces – I mean, who on earth was I to suddenly waltz in and disturb the peace?*

After a month of surveying a modest sample of EDGE users, the findings revealed that people were generally very happy with EDGE and the magical things that it can do. A few niggles here and there, but on the whole, survey feedback was good. Phew! A key take-home message was – and forever continues to be – how fundamental training is to perceptions of usability and satisfaction amongst new users. If a new user is thrown in the deep end with no context on how and why they should use it, then resentment will soon harvest and unveil itself in subtle ways. The survey was implemented 3 years in a row and, with the upcoming arrival of EDGE 3 in the coming months, I am sure that the survey will be administered again very soon.

Jump forward to 2022 and I cannot begin to explain my surveying antics! In my role, I am proud to wear a variety of fashionable hats. On the EDGE side, I am an event organiser of the annual EDGE User Conference, often utilising feedback from delegate surveys to guide planning decisions. I am also a data and insight analyst, often pulling out behavioural statistics from Google Analytics to inform EDGE 3 functionality ideas to the Knowledge team. On the academic side, I work alongside some brilliant people in conducting surveys on important current issues with a health or clinical angle. For example, during the past two years since the pandemic, I successfully led a series of online and community surveys to understand sociodemographic predictors of COVID-19 vaccine hesitancy in sub-Saharan African countries, such as Ghana and Togo. These findings assisted Ghanaian policymakers in understanding how and who to target in COVID-19 vaccination campaigns. I am also currently running an online Health Needs survey for Ukrainian migrants and internally displaced people, with the aim to report our crucial findings to national humanitarian and medical organisations to direct support to those who desperately need it.

Data makes the world go round. And surveys are one way to collect new data and translate it into actions that can deliver benefits. I am proud to be in research, and I look forward to seeing what new and exciting surveys I can help deliver in the future. All this talk of surveys… it seems only fitting to end with a survey question, doesn’t it…?

Please rate the extent of your agreement to the following statement:

“I enjoyed reading this blog post”:

1 (strongly disagree)

2

3

4

5 (strongly agree)

EDGE & Remote Monitoring

EDGE & remote monitoring

during the pandemic

Since the beginning of the pandemic monitoring of clinical trials has become difficult, with many workarounds being found to manage it remotely, whether that is sending redacted source data via email, or holding it up in front of the monitor in a Zoom meeting.

Kim Lee, Felicity Gibbons and Mikayala King from University Hospital Southampton (UHS) raised this with us and together we looked at solutions to use EDGE to solve the challenge and the impacts on privacy, risk and how to mitigate these.

Through a lot of hard work, especially by the UHS team they found a solution that worked with monitors to access the documentation through EDGE as a secure portal. Following this we have recently implemented a new browser PDF function (released this month) to support this process, ensuring that monitors can view the source data on EDGE without downloading it to their work device.

Monitoring in person on site is a costly and time consuming activity, for both site staff and the monitors, with a lot of travel costs involved. Remote monitoring is in its infancy still with regulatory and technological issues to be resolved, however we are working with groups to look at how this can be managed effectively to ensure that both the monitor and staff at site can carry this out in the most efficient way possible.

EDGE delegation log advances clinical trial management

It has been great to hear recently that lots of organisations are making use of the electronic delegation log that EDGE has to offer. Especially due to recent times with everything that is going on with COVID-19, it can be even harder to track down those wet ink signatures.

The EDGE delegation log was developed a few years ago now to reduce the burden of paper logs and to make the whole signature process a lot easier. Where the log is easily accessible via EDGE it saves staff a lot of time by being able to access the log anywhere with a computer or device, they could be in their office, in clinic, or even on the go. This already saves research staff valuable time in which they can spend elsewhere, for example seeing and treating their patients. Having the log online also means everyone is working from one version and there is no chance of it getting lost like a paper one sometimes can.

User feedback has included how monitoring visits are a lot easier as the latest version is always the one on EDGE which can be viewed online or a printed copy made available if the site monitor prefers.

The delegation log is also improving communication across different teams and helping provide a better patient experience. One of the CRUK nurses based at Southampton hospital has told us how previously with a paper log they would sometimes have to leave the clinic or unit where they are treating patients to go back to their office, collect the log from the site file and take it over to pharmacy. Now, the nursing team are able to remain treating their patients whilst the pharmacy team can simply log onto EDGE and access the latest version themselves, meaning better communication and no interruption is caused to the patients being treated.

We already know that the delegation log is helping lots of teams work more efficiently and we envision over time the usage which continue to increase as more clinical teams become engaged with using the online version.

If you’re an EDGE user and want to know more about the delegation log, then please get in touch as we have a user guide and video available for more information. Email edgecomms@soton.ac.uk