Author: elemmon

Using Administrative Data in a Clinical Trial

In this post, written for the Early Career Researchers Using Scottish Administrative Data (eCRUSADers) blog, Catriona Keerie, Senior Statistician within Edinburgh Clinical Trials Unit (ECTU) talks about her work within ECTU and her involvement on a rare Scottish trial that used administrative health data. She provides some great diagrams to help along the way, which I can tell you are essential if you want to understand the complicated structure of the data! Catriona also highlights some of the key challenges the team faced in terms of data access and use and offers her reflections on what they learned from the project which could help other trials like this one in the future.

Can you tell us a little about your role in ECTU? 

My role involves a variety of tasks – however, primarily my role is the statistical reporting of trials run from within ECTU. I typically have up to eight active trials throughout the year. My role varies on these – I am Trial Statistician for approximately half of them, and the ‘reporting’ statistician for the other half. When I have my reporting statistician hat on, I’m responsible for the statistical programming and generating the analysis and results.

How trials have you worked on that have involved using administrative data? 

Since I joined ECTU in 2014, I have worked on three trials using administrative data. Two of them used solely routine healthcare data and the third one is running currently, based on a blend of routine data plus data captured within the trial.

Is the use of administrative data in trials becoming more common over time?

The use of administrative data in the trials setting is definitely becoming more common since clinical trials are known to be expensive and time-consuming. The use of administrative healthcare data is viewed as a more efficient means of understanding the health of the population using readily available data. However, there is a trade-off in terms of the quality of the data being captured.

What was the High-STEACS trial?

High- Sensitivity Troponin in the Evaluation of patients with suspected Acute Coronary Syndrome (High-STEACS) was a step wedge, cluster- randomised control trial. In plain English this means…

It’s a relatively recent study design that’s increasingly being used to evaluate service delivery type interventions. The design involves crossover of clusters (usually hospitals or other healthcare settings) from control (standard care) to an alternative intervention until all the clusters are exposed to the intervention. This differs to traditional parallel studies where only half of the clusters will receive the intervention and the other half will receive the control. This diagram helps to demonstrate the difference in designs:

The population of interest were patients presenting in hospital with heart attack symptoms. The trial sought to test a new high-sensitivity cardiac troponin assay against the standard care contemporary assay. Specifically, to test if the new assay could detect heart attacks earlier and with a more accurate diagnosis.

How were patients enrolled into the trial and how does this differ from a standard trial?

Step wedge trials usually randomise at a cluster (hospital) level, rather than randomising patients individually, so this was the main difference to a standard trial. So patients were enrolled rather than randomised into the trial. Standard trials require patient consent before randomisation, but in this context, individual patient consent was not needed due to the randomisation being performed at hospital level. Appropriate approvals for consent were sought through the hospitals.

If patients presenting with heart attack symptoms at any of the hospitals were eligible for the trial (based on our pre-specified inclusion/exclusion criteria), then we had permission (at hospital level) to include them in the study and use their securely anonymised data.

How many patients were enrolled into the trial?

Approximately 48,000 patients were enrolled from 10 hospital sites in NHS Lothian (3 sites) and NHS Greater Glasgow and Clyde (7 sites), over a period of just under three years.

Which administrative data sets were used?

We used a total of 12 distinct data sources which were a combination of general administrative datasets and datasets more specific to our area of research from locally held electronic health care records. Prescribing data was obtained from the Prescribing Information System, also ECG data, plus general patient demographics. Trial-specific outcome data was obtained from the Scottish Morbidity Record (SMR01) and also from the register of deaths (National Records of Scotland).
All data were captured separately for each Health Board – there is currently no amalgamated data source which holds all data. Health Boards are the owners of their own data.

The main linking mechanism for these 12 data sources was the patient CHI (Community Health Index) number. To ensure patient anonymity, CHI numbers were securely encrypted prior to use.

How did you get approval for these data sets? How long did this approvals process take?

Approvals were required at a number of levels. We required ethics approval, approval to use patient data without consent and Health and Social Care approval (through the Privacy Approvals Committee, predecessor to the Public Benefit Privacy Panel). There were also health board specific approvals required for local data to be released. In addition, we required data supplier approval. Finally, approval was needed for the data to be hosted on the Safe Haven platform.

This process was long! This was ongoing throughout the duration of the trial. Although the data was being captured automatically via routine records, the final dataset wasn’t confirmed until relatively late on in the process due to complexities of mapping locally held healthcare records. One of the advantages of the national datasets is that they are the same across all health boards.

Where were the data sets stored?

Datasets from NHS Lothian and NHS GG&C were supplied separately in their own Safe Havens. The combined dataset was hosted on the NHS Lothian Safe haven space on the National Safe Haven analysis platform .

How did the linkage of the data sets happen?

The data sources from both health boards were combined and hosted on the National Safe Haven analysis platform. This wasn’t a straightforward process. Although we’d anticipated capturing exactly the same patient data across both health boards, the reality was quite different.

Data were captured in different formats with different variable names and different definitions. So there was an unexpected element of data cleaning required before the data could effectively be merged into one large analysis dataset.

The final linkage was done using the securely encrypted CHI number for each patient.

What do you see as the major benefits of using administrative data in this setting?

Use of administrative data in this context is a more efficient process – less resource spent on the administrative aspects of trial enrolment e.g. capturing demographic details such as age, sex, postcode or medical history.

Using administrative data also gave us the opportunity to research a large representative patient population in comparison to the setting of an RCT where a strict pre-specified population, not necessarily representative of the target population, are studied.

Overall, what were the major challenges of the study?

From the data side of things, ensuring the correct data was extracted was difficult. The diagram above is very over-simplified view of what happened! The reality of picking up the required variables from two separate health boards which capture data very differently was difficult.

Another challenging aspect was ensuring that a patient wasn’t enrolled more than once in the study. Patients can present in any hospital with heart attack symptoms more than once, so we needed to ensure they weren’t included in the study each time they came to hospital. This required a de-duplication algorithm using encrypted and de-identified patient data.

However, I think the biggest challenge was for those in the team tasked with obtaining the correct approvals. It was underestimated how complex this would be. While approval for the national datasets was straightforward and the eDRIS team were very helpful, processes for locally held data at the time of trial set up were not established. Legislation around patient data confidentiality was continually changing, so we were faced with keeping abreast of new legislation as time progressed. The safe haven networks are now more established and hopefully, the processes are more straight forward.

Is there anything you would do differently next time?

I think the data validation aspect of the trial is crucial. Ideally we would have had more time spent on this in order to ensure the data was as correct as possible. Involving the clinical team much sooner in this process would have helped – they have a really important role to play in terms of ensuring the data picked up makes sense from a clinical perspective.

For High-STEACS, the access to the data was highly restricted and did not include the clinical team. Many of the data discrepancies were only picked up at the final review stage once data and results had been released out of the Safe Haven area.

Working within the Safe Haven environment creates time lags on both sides of the process – data being imported into the Safe Haven and also results exported out at the end take time. We hadn’t considered this time lag when working to tight timelines.

Do you know if anyone is using the learning from this trial for future trials of this kind?

The High-STEACS trial was directly followed by the HiSTORIC trial, addressing similar research questions and using many of the same data sources. So we have been through the loop again which has made for a more streamlined process.
Other trials within ECTU are also making use of the learnings from High-STEACS, particularly from the governance and approvals side of things.


Thanks for sharing this with us Catriona! It is great to see that administrative data are being utilised alongside clinical trials in Scotland. It is also interesting to hear that despite being part of a trials unit like ECTU, the High-STEACS team still faced many of the same challenges that researchers and eCRUSADers have experienced when using administrative data for research. In particular, we can relate to the issues of permissions, timing and working within the Safe Haven environment. Overall, it seems that the timing issues were due to the use of the locally held data rather than using the national data.

PhD Researcher Spotlight: Joanne Mair

Author: Joanne Mair


Hello, my name is Jo and I am undertaking a part time PhD within the Usher Institute, my supervisors are Dr Nazir Lone, Dr Peter Hall and Professor Kev Dhaliwal.  I currently work for the Centre for Inflammation Research as a Clinical Project Manager within Professor Kev Dhaliwal’s team and have done so for the last 6 years. To date my further education consists of an undergraduate degree in Pharmacology, a MSc in Bioinformatics and a MSc in Public Health Research.

I have worked for the University of Edinburgh for the last 13 years in various roles within research.  These include working in a clinical research facility, a research and knowledge exchange office and in research governance.  I also have experience working within the NHS in clinical trials. Prior to that I worked in various ad hoc roles and travelled/worked in South America, New Zealand and South Africa (some photos below!). I have been a member of the NHS Research Ethics Service for nearly ten years, being a member of SESREC 2, then the chair and I now sit on Scotland A.

The group I work within focus their research on respiratory disease and the ways in which diagnosis of respiratory disease can be improved.  Whilst working within this group I have been able to get fully immersed in translational research.  Day to day working can involve anything from writing protocols and regulatory applications to being in the laboratory building medical devices, being in the clinics and wards assisting the clinical staff with study participants, negotiating commercial contracts for third party outsourcing, dealing with finances and creating structures and processes for forging our way through unknown territory and getting novel compounds and devices into man.

One area the group is researching is looking at fast, bedside, point of care diagnosis of pneumonia and identifying the gram status of the infection in ventilated patients.  The group have developed a novel diagnostic technique consisting of an imaging system, compounds that allow diagnosis of lung infection and a delivery device to deliver the compounds into the distal lung. Work is currently underway to pilot the novel technique leading to a second stage clinical study within Edinburgh and three other UK sites.

PhD Motivation

Whilst working within my current research group within the media of novel developments to improve health, I became more aware of the difficulties in pushing research through to a stage where we can get it into the NHS.  Gathering evidence of the impact a novel diagnostic tool could have on the NHS and the lives of patients is a time consuming and arduous process.  Whilst most people appreciate the necessity of ensuring a diagnostic test is safe and does what it intends to do, perhaps measuring the potential impact on the patients and the NHS could be done in more than one way?  Increasing evidence and developments support this way of thinking.  The availability of observational data is increasing all the time and the skill set to put it to use expanding. As such I finally felt I had a focus I could put towards a PhD!  With amazing help and input from Dr Nazir Lone, great support from Professor Kev Dhaliwal (and team, especially Dr Anne Moore) and invaluable time with Dr Peter Hall I developed the outline of a workable PhD, applied for and obtained a staff scholarship.

PhD Plan

Within my PhD I will be looking at the use of the observational data from ICU patients and how this can be used to model the potential impact of a novel diagnostic on patient outcomes and NHS (costs). I would ultimately like to compare this to the data being gathered as part of the clinical study to see how the observational data can add value to or replace some aspects of the clinical study.  Initially, I am focusing on developing the care pathway map within ICU for patients with suspected pneumonia, gathering the necessary data (through extraction from NHS systems into a safe haven plus utilising other data sources/sets), assessing where the novel device could be most useful and comparison with the reference standard as developed through the clinical study. With regards to the health economic modelling I am working towards the construction, parameterisation and analysis of a health economic decision model based on the care pathway developed.  The model will initially calculate expected costs and outcomes for the current care pathway. The new diagnostic test will then be incorporated into the model at key decision points, as indicated by the current evidence and recommendations from the specialist advisory group (for the clinical study). Divergence in the clinical pathway consequent on test results will be modelled based on the diagnostic properties and decision impact of the test.

I have entered into discussions about PhDs in the past and could never quite commit myself but I really feel this one ties in with my work and the group’s ethos whilst being interesting and worthwhile. I’m enjoying it so far, between this, work and living the fairly quiet life in East Lothian (Drem), if you can call having three young daughters (pictured with me below) a quiet life – it all keeps me rather busy!


EHE presentation to the Scottish Government

Last week, Elizabeth was invited down to St Andrews House to present her PhD work to the Health and Social Care Analysis team. Specifically, this presentation covered her PhD research on the provision of long term care to older adults in Scotland, with a particular focus on the usefulness of Scotland’s administrative data (data that are collected routinely as part of service provision) in answering her PhD questions.  In this post, Elizabeth gives you a quick overview of her presentation.

Author: Elizabeth Lemmon

You might be wondering why there is a photograph of me (top right), my mum (top left) and my grandmother (centre) at the top of this post. As well as showing the increasingly familiar image of a multi-generational family (my mum might prefer if there was another generation in there but I have told her she is going to have to wait a few years for that!), I like to use this photograph to tell the story of my PhD. So here goes….

Paper 1: Variations in domiciliary free personal care across Scottish local authorities

Data used: Social Care Survey (SCS) and other publically available, area level data sets

This paper looks at things from my Grandmother’s perspective as an older person who is receiving personal care services. In particular, it explores variation in the provision of Free Personal Care (FPC) across Scottish local authorities, in order to establish whether or not FPC provision matches the need of the population.

Paper 2: Utilisation of personal care services in Scotland: the influence of unpaid carers

Data used: Social Care Survey (SCS)

This paper looks at things from my mum’s perspective as an unpaid carer who is providing care to my Grandmother. In particular, this paper uses the SCS to try and understand how unpaid carers can influence older people’s use of personal care services.

Paper 3: The cost of unpaid care: a standard of living approach
Data used: Family Resource Survey (FRS)

My final paper looks at this from my perspective, as an onlooker to the caring situation going on between my mum and my Grandmother. This perspective asks, “who cares for the carer?”.  The aim of this paper was to understand whether or not unpaid carers experience a reduction in their standard of living due to caring, if so then how much would they need to be compensated by in order for them to reach the same standard of living as a non-carer, and finally how would that level of compensation compare to the current Carers Allowance.

If you want to know what I actually did and found in each of these three papers, you can have a look at my thesis here.

My PhD and Administrative Data

I had planned to use a national, linked administrative health and social care data set for my PhD. In fact, I applied for this in April 2016. Unfortunately, I didn’t get access to it until April 2018 and by this point I had had to come up with a plan B and was running out of time/funding to be able to get to grips with the linked data.

As a result, I made do with publically available, geographical level data, survey data and administrative social care data.

Did the administrative data help? Some reflections…

Well yes, of course they did. I was able to do some pretty cool work in my PhD using the SCS and this wouldn’t have been possible without it. However, the PhD really taught me that the administrative data struggle is real! A few things I highlighted in the presentation to the Scottish Government were:

  • Approvals process and linkage timing. Two years is simply too long in the lifetime of a PhD and I did not foresee that it would take this long.
  • Administrative data aren’t designed for research- they typically lack important controls that we really want/need in econometric analysis. But if we want to answer policy relevant questions with administrative data, surely they should be designed with this in mind? See this recent blog post I did with my colleague from Napier for the Office of Statistical Regulation.
  • There were lots of differences between local authorities in terms of data recording, missing information etc, which can cast doubt on the conclusions (of course I have carried out as many sensitivity and robustness checks to ensure this isn’t the case, but there is still doubt).
  • There isn’t any information about the unpaid carers in the SCS. Again, this is important information that is lacking from the administrative data.

Sadly, I’m still enduring this administrative data struggle in my role here in Edinburgh Health Economics. In an attempt to do something about this, I have spent some time developing a new platform called Early Career Researchers Using Scottish Administrative Data (eCRUSADers). I’m hoping that this will reduce the struggle for any researchers who are new to the administrative data scene. You can find out more about eCRUSADers (or join us?!) on the website here.

View of Calton Hill from the conference room at St Andrews House.


Reflections from the European Palliative Care Research Centre (PRC) Seminar

Author: Katharina Diernberger

The PRC is a European Research Centre consisting of 17 international and 8 national collaborating centres. They plan and conduct international multicentre studies within palliative care, focusing on pain, cachexia and health care services. On the 30th January, the TVT (Two Versus Three Step) study, primarily run by the centre in Edinburgh, presented the initial clinical and health economics results at the PRC Seminar in Oslo ahead of the main results being published.

The TVT Study “An international, multicentre, open randomised parallel group trial comparing a two-step approach for cancer pain relief with the standard three-step approach of the WHO analgesic ladder in patients with cancer pain requiring step two analgesia” recruited patients in the UK, Mexico, Uganda and Israel and was comparing the 3-step approach for pain control currently recommended by the WHO* to a 2-step approach omitting weak opioids.

The primary outcome was time to achieving stable pain control, where stable pain control was defined as the first day of three consecutive days with average pain score ≤3 on a numeric rating scale of 0-10. The trial also looked at a potential increase in opioid-related side effects.

This was a very interesting trial from a health economic viewpoint, taking into account the different costing systems within the participating countries. Though the quality of life component (EQ-5D-5L) was captured in all countries, a full economic evaluation was only possible for the UK as the country specific value set was readily available.

The main results of the study can be summed up fairly quickly – omitting step 2 (weak opioids) showed no significant difference in terms of pain control, lead to a reduction in opioid related side effects, is cheaper and patients -reported better outcomes for quality of life. Further to this, more than half of the patients who started on a weak opioid had to switch to a strong opioid in order to achieve pain control. The link to the full publication will be added as soon as the results are published.

Figure 1: Preliminary results from the TVT study. Number of Patients who needed to switch from a weak to a strong opioid within 20 days.

The introduction of the presentation highlighted the importance of health economics within palliative care (as a main tool for decision making within the health care sector) and tried to clarify misconceptions about health economics. It focussed on the challenges we are facing in terms of collecting costs, measure patients’ quality of life and putting a value on “life improvements” in this particular setting. This part of the presentation facilitated interesting discussion at the conference and some ideas for possible future collaborations.

After the seminar I stayed in Oslo for the weekend to catch up with friends and use the opportunity to visit the Henie Onstad Art Centre in Oslo which is currently hosting the “Picasso 347” (below), and “Claude Monet and Bærum” exhibitions as well as “Yayoi Kusamas’ – Hymn of Life” (at the top of this post). I can highly recommend a visit!

*WHO 3-step-approach:
Step 1. Non-opioids (non-steroidal anti-inflammatory drugs [NSAIDS], acetylsalicylic acid [ASA, aspirin] and paracetamol [acetaminophen]) for mild pain.
Step 2. Add an opioid for mild to moderate pain (Codeine, Tramadol).
Step 3. Add opioid for moderate to severe pain (morphine) titrated to pain relief or alternatively to occurrence of dose-limiting adverse events (AE).

Researcher Spotlight: Aileen Neilson


Aileen joined Edinburgh University’s Usher Institute and Edinburgh Clinical Trials Unit (ECTU) as a Senior Health Economist in 2018.  Aileen’s current role includes leading and developing health economics research in The University of Edinburgh and NHS Lothian, contributing to the development of new methods and techniques in health economics through methodology research embedded within applied studies e.g. Randomised Control Trials and other study design. She has experience in conducting and managing health outcomes research and economic evaluation studies in the UK NHS setting and other European countries.

She holds a BSc in Science with Management Studies (Napier University, Edinburgh) and an MSc in Operational Research (Strathclyde University, Glasgow). Prior to joining ECTU Aileen worked as a Research Fellow with the Health Economics Research Unit, Aberdeen University (HERU) for 5 years. She has worked in various clinical areas including oncology (prevention/screening/detection/treatment), orthopaedics and trauma surgery, intensive care, stroke, rheumatic and musculoskeletal diseases and chronic pain. She has 25 years of prior research experience, in academia (e.g. Universities of Nottingham, Dundee, St Andrews, York, Aberdeen), the NHS (Lothian – Primary and Community Care Division) and in health care consultancy roles (e.g. HealthEcon AG, Basel, Switzerland, and the Norwegian Knowledge Centre for the Health Services, Oslo, Norway incorporated in the Norwegian Institute of Public Health as of 1 January 2016).

Research Interests

Aileen’s research interests are broad, spanning both developing and applying trial- and model-based economic evaluation methods of different interventions/technologies. She is particularly interested in economic evaluations of public health interventions, and research that focuses on the (improved) use of routine administrative data for cost and outcomes measurement in undertaking heath economics analyses/ economic evaluation studies.

Current Projects




Aileen is currently the course organiser for the “Introduction to health economics and resource allocation” elective course on the Masters in Public Healtj (on-campus) which ran for the first time in 2018/19 and is currently running for 2019/20. Aileen also teaches alongside our Research Fellow, Elizabeth Lemmon, on the new undergraduate module on Health Economics which is being offered for the first time in the School of Economics. She also supervises masters’ dissertation projects. Aileen has also taught health economics courses on various masters and undergraduate programs at other academic institutions (online and on-campus).

Aileen has also been a regular presenter on a training course providing an introduction to the identification, appraisal and application of economic evaluation for policy-making in public health (run by HERU in Aberdeen and funded by the Health Economics Network for Scotland).

Aileen is also the Edinburgh representative for the new Scottish Health Economics group.

Final meeting of the Lothian Cancer Data Intelligence Project

Author: Holly Ennis

The National Cancer Research Institute Annual Meeting in Glasgow 2019 marked an important milestone for members of the ECTU health economics group involved in the Lothian Cancer Data Intelligence Project (LCDI). It marked the end of an 18 month collaborative project to explore the completeness, data quality and scope of a comprehensive linked cancer regional dataset accessed by NHS Lothian Analytical Service. The project, partially funded by the Association of the British Pharmaceutical Industry, Pfizer UK, Novartis Pharmaceuticals UK Ltd, AstraZeneca UK and NHS Lothian and funded through Joint Working with Roche Products Ltd, also sought to explore the need for real world data and how to facilitate data requests from different stakeholder groups.

In a final meeting the key deliverables of the study were presented: a data dictionary and data quality report in the form of a wiki within the public domain and a research governance framework managed by NHS Lothian ready to pilot data requests. An important part of the project was a series of worked examples, modelled around a relevant research question, which was used to test out the processes and instructions developed as part of the LCDI study. The largest of these research questions was pathway visualisation (featured below) using national datasets to look at treatment sequencing patterns in secondary breast cancer (ER +ve HER2 –ve). This was developed into an abstract and presented at the NCRI 2019 meeting by Dr Ashley Horne as part of the Silent Theatre!

Learning from the LCDI project has led to the launch of the ‘Edinburgh Real World Data Service’ which is run jointly by the Lothian Research Safe Haven Team and the Edinburgh Cancer Informatics Programme with the objective of improving the availability and use of real NHS data to inform new reimbursement models that can ultimately provide better value medicines for NHS patients.

Learn more about the Edinburgh Real World Data Service here.

INFO-BC: What We Learned From Think Aloud Pilots

Author: Alistair Bullen

Background to the project and the think aloud pilots

The INFO-BC (Supporting shared decision making in secondary breast cancer) project is continuing to make great progress towards releasing a full-scale survey to patients, health professionals and the general public. INFO-BC is a planned survey which aims to understand preferences for secondary breast cancer treatments, you can find out more here. The study recently completed the think-aloud pilot stage of the project. 10 patients and 5 health professionals piloted early versions of the questionnaire whilst being asked to talk through their decision making. The feedback we received during the pilots allowed us to make improvements to the questionnaire, we then showed the improved version of the questionnaire to the next respondents. Changes were often made to the attributes and levels in the Discrete Choice Experiment (DCE). Attributes refer to the factors of treatment which were included in the survey and levels refer to the different available options for the attribute.

The table below illustrates how the attributes and levels changed as a result of the think-aloud pilot. Diarrhoea didn’t change significantly but you can see that it is composed of three levels; None, Grade 1 and Grade 2. Grades refer to the official Common Terminology Criteria for Adverse Events (CTCAE) which are used by health professionals worldwide to classify medical problems, symptoms, and side effects. Health professionals tend to be familiar with CTCAE criteria so were told that the grades themselves, for patients they were given a description which effectively translated the grade into standard language. There were many changes which we implanted as a result of our piloting, here I will discuss three key changes which were of particular importance.

The key changes

The first key change between the first and final version of the questionnaire was the removal of the mode of administration attribute. The decision to remove the attribute was partly because several respondents told us that the attribute was not important when compared to the other attributes. Also, we were already uncertain about whether to include the attribute, several studies similar to ours which had used a mode of administration attribute in the past found it to have little effect on people’s choices, and there is already a significant body of literature on people’s preferences for mode administration.

The second key change was that progression-free survival (PFS) was swapped for overall survival (OS). We initially failed to effectively communicate to patient respondents what PFS meant. PFS is an important measure for those who study cancer. PFS is the length of time treatment can control a cancer before it begins to grow at a clinically significant rate. It does not necessarily ensure that a patient’s life expectancy or quality of life improve. We realised that it was hard to disentangle the concepts of quality of life and length of life from patients’ interpretation of PFS. This meant that patients who chose options with better PFS weren’t necessarily interested in PFS itself, they may have been interested in a better quality of life and longer survival. A recent publication by Michael J. Raphael in Canada also came to our attention which assessed to the use of PFS in studies like ours, it argued that PFS was not being effectively communicated to patients. All of these factors considered we decided that it was simpler to ask patients to consider OS rather than PFS.

The third key change was that risk of urgent hospital admission (UHA) was combined with OS. In the early versions of the questionnaire, the respondents were shown a graphic of 100 people with some coloured in to represent risk of UHA. In a separate box, patients were shown a separate graphic illustrating the survival prospects at 1 year and 5 years for 100 people. Not only did the graphics for OS prove to be difficult to interpret but we failed to communicate to patients how the two concepts were related. In the early versions of the questionnaire, we intended the risk of UHA to be life-threatening, meaning that there was risk of death. We, therefore, attempted to communicate that the OS prospects were only relevant for individuals who completed treatment and that patients who experienced a UHA were required to stop treatment either because they had died or because treatment had proved too dangerous. This relationship was both difficult to understand and an added complication. It became apparent that we needed to more clearly and simply demonstrate the relationship. The solution we enacted was to present a single graphic as shown below which demonstrated a timeline which first showed how patients experienced a UHA within their first year of treatment, then how many patients could expect to be alive at 1 year, and how many could expect to be alive at 5 years. This solution proved to be easier to understand for respondents.

Concluding remarks

The think-aloud pilots proved to be extremely useful. I spend much time thinking about the precise scenario we are asking patients to imagine and it can be difficult to see what may be confusing to someone looking at the problem with a fresh pair of eyes. I would like to thank Morag McIntyre, the research nurse for INFO-BC, for conducting the pilots. I would also like to thank all of the patients and health professionals who took time out their days to pilot the survey and contribute to this important research.


2019 European ISPOR

Author: Robert Nagy

2019 European International Society for Pharmacoeconomics and Outcomes (ISPOR)

As a PhD student working on a project that is on the borderline of Data Science, Medical Informatics and Health Technology Assessment, I felt it was crucial for me to attend this year’s European International Society for Pharmacoeconomics and Outcomes (ISPOR) – the leading professional international organisation for health economics and outcomes research (HEOR) – conference held in Copenhagen, in early November. This was the biggest conference of its kind to date on the continent and had the main theme of Digital Transformation of Healthcare: Changing Roles and Sharing Responsibilities’. The event attracted more than 5,500 global healthcare stakeholders and HEOR thought leaders representing more than 90 countries from all sectors of healthcare, including researchers and academics, assessors and regulators, payers and policymakers, the life sciences industry, healthcare providers, and patient engagement organisations.

Before the main conference began, I attended two hands-on pre-conference half day courses in budget impact analysis and model design held by world-leading experts. The organisers provided very detailed, useful printed course materials and software-based modelling tools that I plan to utilise during the implementation stage of my PhD.

The conference opened with the first plenary session on the 4th November, Healthcare Digitalization: Instant, On Demand, and Always Connected.” New technologies are driving change in healthcare systems; influencing the way diseases are prevented, diagnosed, and treated. This panel explored the issue of digitizing healthcare and how this is impacting healthcare and health systems globally.

The second plenary session, Shaping the Digital Healthcare System,” was held on the 5th November. Healthcare is changing rapidly with this transformation impacting every area of the healthcare system, including its structures, processes, policies, and practices. This panel examined how those working in healthcare are adapting to these unprecedented technological developments to deliver more productive, effective, and personalised care for patients.

The third and final plenary session, held on the 6th November, discussed the topic Big Healthcare Data: Endless Opportunities for Research and Learning”. Big data present a tremendous opportunity for the measurement and reporting of quality in healthcare that can enhance insight and decision making. In this session, panellists discussed a number of examples where experts are effectively using big data for research and to drive learning at the healthcare system level.

ISPOR CEO and Executive Director Nancy S. Berg stated, “ISPOR Europe 2019 featured many innovative sessions centering on healthcare transformation fuelled by digital technologies. ISPOR’s largest conference to date (with more than 5500 registrants) convened a wide variety of healthcare stakeholders to help solve many of the challenges that impact healthcare and to advance HEOR excellence to improve healthcare decisions globally.

A paradigm-shift featuring technological and system-wise transformation are therefore unavoidable. Coverage of the new, most efficient interventions and their support-mechanisms at scale pose an unsustainable financial and capacity burden on health systems worldwide.  Thus, affordability issues in health care are perceived as a ‘global crisis’ today. Consequently, patient-level real-world data should be exploited to create affordable value-added health services.

Utilisation of vast healthcare data, creating better software applications and back-end IT infrastructure to generate real-world evidence, which can be used directly by healthcare decisions-makers regarding the adoption and distribution of new innovative health technologies, are all prominent topics on policy-makers’ agendas. Overall, this can promote more efficient health care provision and ensure better patient outcomes. We are in the midst of an era in which organisations  and governmental bodies around the Globe have teamed up and really started to exploit data assets at scale by utilising the most advanced information technologies to solve a broad range of urging problems that challenges health systems’ sustainability and operations today. For me, witnessing these remarkable initiatives and actual transformations across Europe was an invaluable learning experience.

The 9th International Seminar of the European Palliative Care Research Centre

Author: Katharina Diernberger

Health Economics at the 9th International Seminar of the European Palliative Care Research Centre

At the end of October (23rd to 25th), I travelled to Krems in Austria to attend the 9th International Seminar of the European Palliative Care Research Centre (EPCRC). In this post, I will offer my thoughts on the conference and tell you a little about my work which I presented there.

This was the second time I have attended the EPCRC conference- last year it was held here in Edinburgh. Whilst I enjoyed the conference last year, my reflection was that the health economics voice was definitely lacking. So, I was really hoping for good things for the conference in Krems- especially since for me this meant travelling to my home turf! I am happy to report that I was not disappointed. This year’s presentations included a lot of health economic considerations and health economics featured as a core topic throughout. For example, a talk by Professor Nathan Cherny form Israel was mainly focussed on the Health Technology Assessment process and how it links to the Magnitude of the Clinical Benefit scale. Anna Kitta from Austria and David Blum from Switzerland presented study proposals in the area of eHealth mentioning the potential costs savings for the health care systems through to technological innovation.

I also had the great opportunity to present on the Friday morning of the conference. Having attended the conference before, I knew that the audience won’t come from a health economics background. I was therefore mindful that the mention of economics alongside end of life care might have triggered in their minds the ever present myth that Economists want to take resources away from these settings. I therefore made it my mission to ensure that I convinced the audience otherwise!  I decided to split my presentation into two parts. I started with the topic “The (in)compatibility of health economics and end of life care”.  In this first part, I introduced some of the key health economics ideas and summed up the importance and the challenges that health economics faces, particularly with respect to end of life care.  I also outlined the current situation in the UK and presented some new developments in methodological research. Hoping that I had managed to bust some health economics myths, the second part of my presentation covered the “Health economics in the EPAT study”. In this part, I showed a bit of applied health economics, presenting the economic results of a cluster randomised controlled trial testing a systematic approach in the assessment and management of cancer pain. Both presentations were well received and prompted lively discussions, so I was very happy with that.

The overall quality of the presentations at the conference, as well as the presented topics, were very well chosen and incredibly relevant to the developing field of health economics within end of life care. I got the impression that early palliative care is a major focus within the community and there is definitely a shift towards making palliative care services more flexible and patient centred. Another commonly discussed topic, which linked well with my presentation, was the potential “overtreatment” of patients in the last phase of their life.

An additional main focus of the conference was on Patient Reported Outcome Measures (PROMs) , which is of great importance for the methods development of health economics. I could take away that not just the health economists but also clinical professionals are very aware that patient questionnaires designed for a curative setting are not fit for purpose in an end of life situation.

I hope to attend next year’s conference and I am curious to see if the trend of increasing awareness and representation of health economics continues. You’ll see below some photos from the lovely Austrian dinner which the conference organisers put on for us, with traditional music and dances performed by the children group from the “Wachauer Trachten und Heimatverein Krems”.

Reflections on the first Scottish Health Economics meeting

It’s been just over one month since the official launch of Scottish Health Economics (SHE) at Discovery Point in Dundee.  Set up by the Health Economics Research Unit (HERU) in Aberdeen (find out more about SHE here), “SHE seeks to act as a vehicle for widening engagement with health economics in Scotland, bringing together users and producers of health economics who are interested in the development and application of health economics in Scotland. All activities will draw on the extensive experience and expertise Scotland offers in health economics” (SHE Terms of Reference, 2018).

Since the launch of SHE on the 3rd of October, we’ve had time to reflect and it’s safe to say we are more excited than ever about the future for health economics research in Scotland! In this post, we reflect on the event and highlight some of the take home messages.

Overview of the day

The tone for the day was set by Mandy Ryan, Director of HERU, who gave an enthusiastic welcome to all SHE participants. From this point onwards, the health economics energy in the room was palpable!

Next up, Rachel Baker, Professor of Health Economics at Glasgow Caledonian University, provided an overview of health economics research in Scotland. Of noticeable interest was the useful maps she had prepared, pin pointing where us health economists, both within academic and governmental institutions, are hiding. Although Stirling was left out of the picture (Seda Erdem and colleagues quick off the mark to rectify that!), the map surprised everyone in the room as to the sheer numbers of health economists and other bodies contributing to health economics research going on in Scotland.


© Prof Rachel Baker

Following Rachel’s introduction, Marjon van der Pol, Deputy Director of HERU, talked about capacity building in health economics, and strategies for attracting the next generation of health economists.

The rest of the day was packed with excellent presentations (and a delicious lunch) from academics across the SHE community on a number of interesting health economics research questions, with reflections from the policy community including the Scottish Government, Healthcare Improvement Scotland, NHS Education Scotland and NHS Health Scotland. The academic presentations included our own Research Assistant, Alistair Bullen, who gave an elevator presentation on the use of PACE Statements as source of qualitative secondary data to inform attribute selection in discrete choice experiments.

Whilst all of these presentations were extremely interesting and really showcased the wealth of health economics research going on in Scotland, perhaps the most constructive part of the day was the afternoon breakout sessions (where I think we all agreed we could have spent all day!). The sessions allowed for the opportunity to discuss what we want to get out of SHE, including activities, training, funding opportunities, and the possibility of an annual meeting.

Prof Cam Donaldson summed up the day perfectly in his closing remarks, commenting on the unmistakable enthusiasm that charged the room throughout the event.

Take home messages

As a group, we believe that the SHE network offers a starting point for collaborations with other health economics researchers in Scotland that we can build on going forward. Simply knowing and being aware of the research going on in Scotland is in itself useful to identify who holds expertise in a particular area. At the same time, SHE will allow links to form between academic researchers and the policy community, ensuring that Scottish health economics research is contributing in the issues that matter most to the people of Scotland.

Overall, we felt that the take home message from the day was really the unique position that Scotland is in and the potential that exists for collaborative work between and across academic institutions and government.

We recently completed the SHE event survey so we will wait to see the outcome of that and very much look forward to seeing how SHE develops and contributing to the networking potential that SHE offers.

EHE would like to thank all of the organisers and presenters who made the day worthwhile!