What if you’ve been in a data void for eight years? By Bevis Man, Communications Director, Sarcoma UK Published: 9 August 2018 We know data is important. It lends weight and credibility to an organisation’s work, separates speculation from fact and can help shape your objectives. Having dependable data is a fantastic reason to engage your stakeholders and is a potential catalyst for change. But getting hold of the data you want isn’t necessarily easy.Our statistic of about 3,800 people diagnosed every year with sarcoma cancer in the UK was increasingly at odds with what we were hearing anecdotally. Back in 2009, that figure was the best we had, but as an evidence-driven organisation, it’s hard to ask for change if we have no idea the scale of the issue. We set about to change this. Where to start? In October 2017, we embarked on a data journey that would eventually take eight months, led by Sarcoma UK’s Director of Research. Previous attempts had resulted in patchwork data that was inconsistent, with many gaps and unanswered questions. The first step was understanding what data was collected, after learning that each UK nation had its own data collection set and system. From there we had to find out who within the UK’s health informatics systems to approach, which ended up being The National Cancer Registration and Analysis Service (NCRAS), Welsh Cancer Intelligence and Surveillance Unit, the Scottish Cancer Registry and the Northern Ireland Cancer Registry. We then had to pass their due diligence requirements, find out who best to ask within each body and finally how to ask to get access to this data. This initial phase of work took about three months. Getting top line incidence data was first on our wish list. Over several months, everything else on that list was whittled down to whatever data was actually available. The reality of the situation was that across the four devolved nations, different things about sarcoma were being measured in different ways over different periods of time, which makes collation and comparison difficult. Other types of data we wanted, like recurrence rates, just isn’t (or wasn’t) being measured, or perhaps not by all four nations. This process wasn’t going to be straightforward; we would have to make the most of what data we did have access to.Over the next four months, we analysed this data, went back to those bodies for more information, and reworked our key messages. We had enough to reset baselines and present a more robust take on sarcoma in the UK. For the first time in eight years, we had a far better idea of what was going on, and some indicators of what progress, or lack thereof, had been made. We released this information as part of Sarcoma Awareness Week in early July 2018. Strength in numbers We’ve learnt a lot during this process. Not only does this whole process take time, especially if your organisation doesn’t have a dedicated data officer, but you need to put aside time and effort to make sure you understand what the data is actually telling you. This time you spend talking through and preparing your staff team, trustees and ambassadors about what the data is saying and how this affects key messages is an investment. You’ve had the luxury of working on this for months and will have unpicked everything, but everyone else is coming to this cold. Sit down with your communications team and talk through any questions or potentially negative reactions you might receive, both internally and externally, and how you might manage those. There will be a whole host of additional questions that people want answered that data, or at least this particular set of data, cannot answer. For those messages you do put out, there’s a responsibility to stakeholders about what you’re saying and how clearly you can say it. Be mindful about what information is truly useful. Raw data is merely numbers and statistics without context, so may be of limited use to someone who may have just been diagnosed. Will presenting the data do more damage than good? There will likely be a struggle of what information you want as an organisation, what exists in terms of data outputs from the sources and what is meaningful to your range of stakeholders. An example of this is our refreshed key message, that 15 as opposed to 10 people a day are being diagnosed with sarcoma in the UK. It’s highly likely the difference is the result of better diagnoses and coding of sarcomas, giving a far more accurate representation of what’s happening, as opposed to an outright increase in incidence. But this takes time to sink in. As an organisation we’re only now treading a path for data that other, perhaps larger, AMRC members have no doubt gone down already. We’re now building those relationships at the right organisations to make future data requests easier. With the added knowledge of what data is and isn’t available, we’ll be asking our stakeholders what they want to know, which in turn will shape our future projects. If the data doesn’t exist, we’re earmarking these as potential campaigns in the future, so we only ever build on our understanding of sarcoma cancer.