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

Take Research To New Heights

I wanted to start by saying thanks to everyone who attended the 2020 conference which we held at Farnborough International Exhibition and Conference Centre earlier this month. It was a real success with close to 400 delegates through the door.

Thank you also to our wonderful speakers who brought their knowledge, expertise and humour to the event, allowing delegates to learn in a relaxed but productive way. Thanks to our new and returning sponsors and exhibitors, who provided support for the event as well as interacted with delegates during the lunchtimes.

This year we changed hosts and had Dr Kevin Fong lead the main room and introduce all of our keynote speakers. As a medical doctor and space medicine expert, Kevin was very fitting for this role with our aviation inspired theme.

We tried to keep to the new heights and airport theme as much as possible by having a bag drop area for delegates, e-ticket registration process and electronic screens which displayed the agenda in a departure board style layout - just a few things to add to the overall conference experience.

Us a team are extremely happy with the way the conference went and we believe the choice of venue (being located next to Farnborough airport) was an excellent one for our theme – TAKE RESEARCH TO NEW HEIGHTS. The venue allowed us to use multiple rooms to host user-led breakout and workshop sessions specifically on EDGE functionality and experiences. The conference also played a big part in celebrating 20 years of EDGE at the Clinical Informatics Research Unit as this was highlighted throughout the day by our hosts, as well as a special 2020 puzzle we had displayed in the networking area.

One of my highlights of the event was having Freddie, a 9-year-old boy present all by himself on how research has helped his life dramatically after having a severe peanut allergy. His presentation was a lovely reminder to why everyone is doing the job they are doing, for the patient. I also can’t forget the opening of the conference which was definitely another highlight for me. Here we had an airline safety demonstration by some members of the EDGE team, this certainly brought some laughs to the room and reminded delegates of some useful information, like remembering to wear their passports (delegate badges) at all times.

We are now thinking about what to do in 2021 and will be working on ways to improve the conference following useful feedback provided by delegates through an online survey.

Look out for future news coming from us with our 2021 plans!

How close are we to Artificial Intelligence and Machine Learning being utilised in every day work?

AI is the current buzzword that we are all hearing on a daily basis, whether it is in a news article or at a conference, however understanding the implications of this technology, in the short, medium and long term is important to give it some context in relation to our daily work lives. Sarah Bennight, Director of Marketing at Stericycle Communication Solutions is quoted as saying ‘AI is everywhere. Every vendor seems to tout it, and every conference is filled with talk of everything AI. Folks tend to think that you throw in AI, and your paper gets published, your company gets funded, your product gets sold, and your customers’ interests get peaked. And therein lies the problem.

80% of Health executives agree that within the next 2 years, AI will work next to humans in their organisation, as a coworker, collaborator and trusted advisor, however 81% agree that organisations are not prepared to face the societal and liability issues that will require them to explain their AI-based actions and decisions, should issues arise (Accenture, Digital Health Tech Vision 2018).

To me, this sounds like ‘we know it’s coming, we just aren’t sure how we will handle it’, and that is probably true of many challenges we face on a daily basis. We have a vague idea of what is coming up in the near future, but it takes time and effort to dissect that into the day to day business of running an organisation.

One challenge that we have seen here in the Clinical Informatics Research Unit is around data quality, or often the lack of it. We have a team who work with hospitals to extract clinical data sets from Electronic Health Records and merge that with other datasets, in order to allow clinicians to link and query the information, for either research or audit purpose. A huge amount of time is invested in cleaning that data, identifying any outliers in it and addressing them. Even the question of ‘what is an outlier’ needs to be defined up front. Arm measurements can be recorded in CM’s, MM’s or inches (we’ve seen all 3). Alternatively some data points are clearly arbitrary, for example patients who are 1 cm tall and weigh 1 kg, the result of which can often be tracked back to the field being compulsory for someone to complete in the EHR, who doesn’t have that information to hand at the point of completion and just enters those values to reach the next page. Dr Sachin Jain, former CMIO at Merck and now CEO of CareMore Health explain to Forbes in January 2019 ‘The first thing we’ve learned is the importance of having outstanding data to actually base your Machine Learning on. In our own shop, we’ve been working on a few big projects, and we’ve had to spend most of the time just cleaning the data sets before you can even run the algorithm. That’s taken us years just to clean the datasets. I think people underestimate how little clean data there is out there, and how hard it is to clean and link the data.

Bias is another challenge inherent in machine learning. The algorithm will only be as good as the data model that it is trained on, and ensuring that is a big challenge. A worrying quote from Dr Dhruv Khullar in the New York Times said ‘In medicine, unchecked A.I. could create self-fulfilling prophesies that confirm our pre-existing biases, especially when used for conditions with complex trade-offs and high degrees of uncertainty. If, for example, poorer patients do worse after organ transplantation or after receiving chemotherapy for end-stage cancer, machine learning algorithms may conclude such patients are less likely to benefit from further treatment — and recommend against it.

Despite the challenges that lay ahead with AI and ML, the excitement surrounding it is unlikely to go away, and in the future, understanding the algorithms that govern decisions made by computers will be a core component of the governance of any organisation utilising them.

Certainly from an EDGE perspective, I think I am quite safe to say that we will monitor the developments in these technologies over time, and when, or most importantly if the time is right, implement them in a careful and considered manner.

In the meantime, if you want to have a play around with Machine Learning, there is an interesting model that you can use, provided by Microsoft, on the dataset of passengers on the fateful Titanic Voyage that can be found here

Behind the scenes with the Knowledge team

I think it’s a fair statement to make that my team are one of the hardest working and most dedicated teams I’ve had the honor to work with. They work tirelessly behind the scenes to make sure that the system continues to run, support is provided to everyone that needs it and at the same time making improvements left right and center to all aspect of what we do.

You might have heard of the term Kaizen, a Japanese concept for continuous improvement that began as part of the Toyota Production system, as a method to improve product quality. Well, that term pretty much enshrines what our team do every single day by constantly coming up with new ideas and new ways to change what we do for the better.

Seeing as so much of this goes on behind the scenes, and probably to a large degree unnoticed, I thought this would be a good opportunity to share with everyone a behind the scenes peek at what we are doing at the moment, and possibly dispel the myth that tech employees just sit around all day on beanbags, listening to David Bowie and drinking Cortado’s. We only do that on Fridays.

For the first time in history the majority of NHS Trusts are working together around a single research project record, bringing their collective information together to form a single view of that research. However, historic imports of data into EDGE from silo’d hospital research management systems has caused many duplicate records to be created in the system, meaning that these need to be reviewed and merged.

Since January our team has merged over 1,500 project records, taking a huge amount of time, care and considerable knowledge to carry out this task in order to help improve the quality of the information within EDGE. As our team come from backgrounds in R&D, Pharmacy, NETSCC, CTA’s and more, their knowledge of research allows them to carry out due diligence when doing these tasks that someone from a non-research background would struggle with. This is a nod to the skills our team hold and use in providing our services, and especially to Jen for her sheer determination to make this happen.

In the thread of continuous improvement, we are currently testing a new more complex automated matching process to studies at they come from CPMS. If this is a success we will release it into the Live system to reduce the burden of duplicate studies for everyone.

Over the past 7 years we have been pushing out a lot of new functionality into EDGE on a monthly basis in the drive to deliver the functions that people want to use. However the support guides in our support section have not quite kept pace with this change. Therefore the whole team are now working on reviewing all 170 guides, updating, re-writing or creating new versions where necessary and generally giving them the attention they deserve.

Currently we are in the process of migrating to a new email support desk system, that will deliver a whole range of improvements across the board when responding to queries and questions, and linking those to the new support articles, so keep an eye out for that. A huge amount of work has gone into setting this up and so again I’d like to thank the team and especially Lawrence for his knowledge and patience.

As well as this we are working closely with the development team on the concepts surrounding EDGE Version 3. It is easy to start dreaming about the new functionality that will be available in the system, however the developers do keep reminding us that, in house building equivalent terms, they are working out how deep to dig the foundations, so our team should refrain from telling them which colour we’d like the feature wall to be in the lounge. All of the new exciting functions will come in good time.

As I always find when writing these blogs, I reach the end of the page and have barely scratched the surface of variety of other projects that we are working on such as data security, integration opportunities, DSP Toolkit compliance, our new Blast Injury Research Network, our work with the WHO and World bank, our health informatics work in Sri Lanka and lastly the work we have done in in delivering an electronic medical record system to a hospital in Ethiopa. For more on these check out our Twitter feed @CIRUSoton

I will cover more in future blogs, but I will finish this one by mentioning our conference. If you haven’t already booked, I would highly recommend looking on our website https://edgeclinical.com/2020-conference . Our draft agenda has been released and is packed full of keynotes, break-outs and worked shops covering everything EDGE and research related. It will be a great opportunity to find out more about what we are doing, what is going on nationally and internationally in terms of research and to come and meet our team and collaborate together around the future challenges facing us all.

EDGEY's trip to Canada

It’s been a busy September for EDGEY who jetted off with James and Tim from the CIRU EDGE team to see his Canadian friends. EDGEY’s first stop was to Toronto to visit Rebecca Xu, James Schoales  and Steven Sundquist from the Canadian Cancer Clinical Trials Network (3CTN).

At 3CTN they discussed how CIRU and EDGE can help with Patient and Public Involvement and involving researchers from rural populations across the Province of Ontario. James Schoales showed the team some fantastic new and innovative ways to utilise the data from EDGE within Power BI to help better understand publications from research based within the 3CTN network.

From Toronto, EDGEY, James and Tim jetted over to Edmonton and then to the city of Calgary in the Province Alberta to meet with the fantastic team at Alberta Innovates led by Tammy Mah-Fraser. Over the course of three days the team heard about some exciting initiative within the province including from the Alberta Supporting Patient Orientated Research unit (AbSPORu). AbSPORu offer support services for researchers looking for assistance with initiating research, gaining access to support services like data analysis, translating research impact and applying for grants. This data is then transposed to EDGE where the study is worked up to opening in collaboration with Alberta Innovates.

The week was rounded off with James speaking at the Alberta Clinical Health Research Conference about the Future of Clinical Research looking at exciting innovations in AI and machine learning and how these may influence more intelligent use of data in Clinical Trials and Health Care.

It was a very informative week across the Atlantic for EDGEY who has returned to the office enthused with some great ideas and user stories to tell.

Blog post written by Tim Gibbons,
International/Specialist Project Manager, CIRU
University of Southampton

EDGE & the CPMS project

It was the 9th October 2015 when an email landed in my inbox inviting me to an initial teleconference with the NIHR Coordinating Centre. It was to discuss a proposed integration between EDGE and CPMS. My usual positive attitude kicked in and I thought ‘Hmmmm, that’ll be a nice project for a year or so, how complicated could it be’. Underestimation is a dangerous thing however, which I have learnt many times, usually when starting DIY projects in my house and telling my wife things like ‘the shower will be fixed in an hour or so’, only for it to still be in pieces on the floor a few days later. So as you can imagine, both to my surprise, and not to my surprise at the same time, 3 and a half years later this interface project is still in progress.

In my rather varied career history, I used to run critical incidents in the Kent Police Control Room, such as firearms incidents and large scale public order events which were constantly evolving and each had many moving parts to take into account. I’m therefore used to pressure and stress, aware of the need to dynamically risk assess the situation constantly, keep in mind the bigger picture whilst also trying to complete the task in hand. This has perhaps stood me in good stead for this integration project.

Despite this being the most complicated project that I have ever worked on, I believe it has actually delivered benefits beyond its original design. It has brought our team, the Clinical Research Networks and the Coordinating Centre around the table on an almost weekly basis, in turning building a very close working relationship with everyone involved and developing a much deeper understanding around how we each function. Although we haven’t been able to engage with every Trust in the integration work, we have always involved as many as possible in the conversations to ensure that everyone has a voice in the changes being made.

As Newton said, every action has an equal and opposite reaction, and this cannot be denied. The concentration of our workforce on delivering the CPMS integration has meant that other aspects of our teams work has had to play second fiddle, often meaning that engagement through platforms like ideascale has reduced, or the ability for our team to set up user groups around areas of special interest.

So on a positive note, we are currently in the throes of recruitment, meaning that soon we will be able to re-continue all of the engagement work that enables us to work alongside you all in understanding your business, your processes, your problems and your aspirations in order to deliver the best solutions possible in EDGE.