Meet our featured member for July/August - Carolyn McNamara

Carolyn is a new Associate member

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Hi Carolyn! Please could you introduce yourself and give us an overview of your role as Clinical Trials IT Manager at the Institute of Cancer Research, Clinical Trials and Statistics Unit? 

Currently, I am the Clinical Trials IT Manager at the Clinical Trials and Statistics Unit at The Institute of Cancer Research, London. The Clinical Trials and Statistics Unit (ICR-CTSU) works both nationally and internationally, and focuses on breast, urological, lung and head and neck cancers. We also run trials in other rarer cancer types. We specialise in phase II exploratory and phase III randomised trials of new treatments and technologies (including radiotherapy). Understanding cancer biology and treatment response using biomarker-driven trial designs is fundamental to our research.

I joined the unit in 2013 and I lead a team of six specialists providing expert guidance on the development of databases and systems and related activities to facilitate all clinical trial activities within the ICR-CTSU.

I am also responsible for formulating an effective business continuity plan for the unit, so with the COVID-19 pandemic I was particularly busy! I participate in Information Governance activities for the unit, including asset auditing and consulting on Information Governance issues, particularly in the identification and testing of appropriate technical solutions to support the work of the unit and the wider ICR.

My role also has a national reach and I chair the UK Clinical Research Collaboration (UKCRC) Information System Operational Group providing IT leadership to the 53 nationally based member clinical trials units.  I am a member of the Cancer Research UK Information Systems Working Group, the NHS Higher Education Information Governance Working Group, the Trials Methodology Research Partnership (TMRP) Health informatics Working Group and the Sustainable Healthcare Coalition Working Group. 

Through this I am able to contribute to national initiatives and ensure that the technical innovations, capability and infrastructure of ICR-CTSU remain aligned with national initiatives.

You recently joined the Faculty and it’s great to have you on board as an Associate member. Where did you first hear about the Faculty and what led you to join?  

I saw the Faculty in a post on LinkedIn. I’m not a clinician so I was delighted to see the Associate membership option for non-clinicians. The Significant Interest Groups drew my attention, particularly the patient-reported outcome measures (PROMs) group – introducing electronic patient reported outcome measures (ePROMs) is a strategic objective for ICR-CTSU. We are planning to conduct a Study within a Trial (SWAT) to gauge the appetite for electronic collection of PROMs data directly from cancer trial participants. I am looking forward to attending my first FCI PROMs meeting to learn what other members are doing in the PROMS/ePROMs area.

As a Clinical Trials IT Manager, working for the Institute of Cancer Research, how did you begin working in informatics and what drew you to it?

My background is in technology – I graduated with a BSc. (Hons) in Computer Science with French in 1995 so I’ve always worked in the Informatics area. I joined the ICR-CTSU in 2013, due to a personal interest in cancer and rare chronic diseases. I’m an analyst at heart and I have a passion for always seeking new, more efficient ways of working. I think there is ample opportunity for this in the area of Informatics, particularly as new advances are made in healthcare, and as we look for new ways to share data, treat patients as well as discovering new treatments. The COVID-19 pandemic is testament to that.

What are your main areas of interest and how do you think the Faculty can contribute to it?

My areas of interest are far-reaching but there are a couple of areas that I think require greater focus - greater use of informatics to make use of data that is already being collected as well as interoperability between platforms and systems to facilitate this, as a starting point, as well as attention to governance to access data in a secure way. Data security and privacy is very important to gain and retain public confidence and there needs to be as much focus on this as the technological advances themselves.

Back in 2003, as part of my MBA I looked at corporate social responsibility of organisations and this has only become more important since then and sustainability remain firmly on my agenda. This needs to be an essential part of future work to ensure that we work in alignment with the UN Sustainable Development goals. 

This means looking at ways to reduce waste, introducing responsible procurement and analysing the pathways that our work takes to see where modifications to practices can be made, or new more sustainable practices can be introduced. I think the Faculty can contribute to this by re-enforcing this message to their internal groups and wider national groups that the Faculty works with.

How do you think the Faculty could influence the clinical informatics landscape and in what ways would you like to see it develop?

I’ve experienced first-hand the struggle for joined-up care for patients with long-term, complex health conditions. With the advent of Electronic Health Records (EHR) systems and paperless patient records across NHS trusts, I am hopeful that this will improve. This needs the cooperation of private and national healthcare providers to make this happen, as well as the input of national groups, and groups like the FCI, to ensure long-term improvements.  Healthcare providers shouldn’t work in silos. 

I think the Faculty can contribute to this in the shorter-term through their three-year plan to establish links for clinical informaticians working in healthcare, social care, academia and industry to share knowledge and by helping to embed clinical informatics principles and skills into all areas of health and social care.

Finally, what guidance do you wish you had been able to offer yourself when starting out in informatics?

Be bold! If you have an idea get it out there for discussion. From my experience, what begins as just an idea can, with the right input, grow into a project with huge benefits. 

Expand your area of expertise, to know and understand the peripheries of your work to understand its wider impact and influence, even if it means stepping into new subject areas. Then the outcome of your work will have a greater reach and influence.