HMRN tracks every patient diagnosed with any type of blood cancer in 14 hospitals in Yorkshire and the Humber – around 4 million people live in this area, which works out to more than 2200 new diagnoses each year. The HMRN area population has similar characteristics (e.g. distribution of age and sex) to the UK as a whole, which is important as it means that the research findings are applicable to patients across the country. By harnessing this data, HMRN provides high quality information on the rates of blood cancer in the UK. It also provides a resource for clinicians and policymakers to answer questions about health service provisions for people living with blood cancer.
We asked four people who work on HMRN – Alex Smith, Ann Hewison, Simon Crouch and Vinnette Sinclair – to tell us about their typical day.
What is your role, and how does it fit within the HMRN team as a whole?
Alex: I am an epidemiologist and Deputy Director of the Epidemiology & Cancer Statistics Group (ECSG), so I get to look after a number of large research projects, including the HMRN. My daily role includes overseeing a number of large research projects, including HMRN. Most of my time is taken up directing and running data analysis and deciding how the information produced within HMRN is put to best use, and communicated to the widest audience possible – for example via our website.
Alex Smith (L), discussing myeloma treatment data with Tim Bagguley (R), another member of the HMRN team
Vinnette: I am the research administrator for HMRN. I generate lists of newly diagnosed patients from our NHS database so that we can invite them to take part in HMRN. Our study nurses, including Ann, collect information from the patients’ notes at around 7 months after diagnosis, then later at follow-up so we can see what has happened since their first treatment. Completed forms are returned to me to enter into the NHS database and check, so that they are ready for analysis.
Ann: I am one of eight HMRN study nurses. Between us, we collect weekly information from Vinnette on patients that have been newly diagnosed, and those who need follow up. This information is used by the analysts, including Alex and Simon, alongside other sources of data like hospital admission records, to examine how blood cancers develop and are treated over time, and how they affect patients.
Simon: I am a senior researcher. I analyse and model the HMRN data to help answer questions around issues such as the likelihood of cure, survival and remission rates.
Simon Crouch analysing HMRN data
What does a typical day at work look like for you?
Alex: A typical day for me is, like blood cancers, very varied. I spend a lot of time overseeing the day-to-day running of HMRN, which includes dealing with data queries and discussing how to handle and analyse this information with my team. I also speak to patients about completing questionnaires and meet up with the clinicians who diagnose them. Much of my day is taken up with thinking how we can use our data to answer questions about blood cancers; for example, which patients respond to therapy and which do not? This can be very complex, because there is a lot of variation between people, blood cancers, and treatments.
Vinnette: On a typical day, I will start by opening the consent forms and questionnaires returned to us by patients, logging these in our database and sending out new batches of questionnaires. A large part of my time is spent entering data into our NHS database – I’ve entered these data for all of our 33,000 patients, diagnosed in the 14 years HMRN has been running! Quality control is a very important aspect of my job, as it is essential that the data collected and inputted are correct. Our data entry programme has built-in processes to minimise errors, but I may be asked by Alex, Simon, or another analyst to check and amend data, if necessary.
Vinnette Sinclair working in the HMRN ‘hub’, processing data and dispatching questionnaires
Ann: My time is split between the HMRN hospitals or the University of York. When I’m at the hospital, I record information from patients’ medical notes onto our data collection forms. This includes data about blood results at diagnosis, findings from scans, and information about treatments. When I’m at the university, I process the forms to make sure they are accurate and complete. This is really important, as I know that the information I record could be used by clinical staff (and the people making policy) to decide how best to treat patients.
Ann Hewison checking data collection forms
Simon: I’m usually at my desk early in the morning, as I like the peace and quiet in the office at that time of day! If I’m developing a statistical model, I will get on with that first thing, as I often find the early hours are the best time to do technical work. The rest of the day is taken up with emails, meetings, supervising students, and – after lunch – more statistical work or reading and writing research papers.
What is involved in developing a statistical model?
Simon: The first step is to be clear about the question we want to ask, and this often follows detailed discussions with clinical staff, other members of the research team and patients. Most questions involve ‘time-to-event’ analyses, which measures how much time patients can expect between particular events in the course of their cancer. One question might be: “How long can I expect to be in remission after chemotherapy?”
To answer this, the data are analysed within a computer-based statistical modelling package. This involves linking an endpoint (e.g. time to relapse after chemotherapy) to the patient’s characteristics (e.g. their age or extent of disease at diagnosis) and developing a model that fits the data. Once I have made and checked the model, I discuss it with my colleagues and we decide the best way to use and present the results, so they can answer patients’ and clinicians’ questions.
The process of statistical modelling involves a lot of programming- like this!
What do you enjoy about your job?
Ann: Interpreting patient notes is sometimes challenging, for example when I’m working out how well a patient responded to their chemotherapy. Each patient’s cancer pathway is different, and reading their stories is both absorbing and a privilege.
Vinnette: I really enjoy making sure that HMRN data is of the highest quality possible, as I know that this is really important if the NHS is to continue to offer patients the best treatments.
Simon: I really enjoy developing new models that answer important clinical questions. Another pleasure of my job is working with students who are just getting started on their careers. I supervise three PhD students, and also give statistical and mathematical advice to others.
Alex: One of the main things I enjoy is knowing that our work makes a real difference to patients and their families. We provide information that is not available anywhere else in the world, and we ensure patients are offered the most effective treatments.
What’s something you’re currently working on that you’re excited about?
Simon: I’m looking at ways to improve the information available to patients and clinical staff to help them work together to make the best decisions about treatment. This could be a decision to opt for a treatment that might increase survival, or offer the best possible quality of life.
Alex: I’m working with researchers at the Wellcome Sanger Institute in Cambridge who analyse patient samples for genetic changes. Findings from this study will be linked to HMRN data on treatment and outcomes and should inform future treatment decisions for individual patients.
Members of the HMRN team (L-R: Dan Painter, Stuart Lacy, Simon Crouch & Alex Smith), discussing genetic data
Ann: As well as being a study nurse, I am currently a part time PhD student within HMRN. I use questionnaires and interviews to find out how patients with chronic myeloid leukaemia (CML) manage their daily treatment.
How is the work of HMRN useful for people with blood cancer?
Alex: We’ve recently published a paper which shows how recent changes in the treatment of mantle cell lymphoma have improved patients’ survival. . This information is really useful to policy-makers, who have to make decisions about which treatments should be offered to patients.
HMRN also has a very active patient involvement group, and we always make sure patients (and their relatives) are involved with how we use our data. In this way, patients and their families help direct our work towards areas where further research is needed.
Ann: We have been collecting data for almost fourteen years now, which means that HMRN analysts are able to show how well different treatments work over this time, even in diseases that are very rare.
This figure, showing the frequency (%) of the different blood cancers, was produced from HMRN data; it demonstrates the wide range of blood cancers and how they are arranged by the type of blood cell affected (e.g. B-cell or T-cell).
Simon: Blood cancers are very complex. Because our data are of such high quality, HMRN has become the best resource in the world for understanding how different patient characteristics (e.g. age and sex) and disease characteristics (type of blood cancer) impact on outcome. In the future, this will ensure patients with blood cancers have the best possible quality of life.
If someone wanted to work in your field, what would you want them to know?
Alex: I would want them to know that our work is complicated, challenging and always evolving; but that that means it is also incredibly interesting and rewarding. Epidemiologists spend a lot of time delving into the details of individual cases to tease out details, so having the curiosity and drive to get to the bottom of a question is essential.
Ann: I would let them know that it’s a good feeling to be able to contribute to the unique work of HMRN, and reading through a patient’s medical history can be fascinating and humbling.
Is there anything the team would like to say to Bloodwise supporters?
Without Bloodwise supporters, HMRN, and the continually developing knowledge that we produce about blood cancers, would not exist. The HMRN team are immensely grateful to all the people who have donated to Bloodwise, and made it possible to set up such a unique, world-class resource, which we envisage will go on to benefit patients and their families for the foreseeable future.
HMRN's research can only happen thanks to our amazing supporters. Find out more about fundraising.
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We'll be back soon with another day in the life!