Author: Elizabeth Lemmon

People Make Data: Part 4

I’m thrilled to have Mr Steve Clark contributing this post to the eCRUSADers People Make Data series.  Steve has a wealth of knowledge about cancer care throughout the UK and since his colorectal cancer diagnosis in May 2013, he has been involved in various projects and campaigns within the colorectal cancer sphere, including setting up his own Strive for Five campaign. Steve also has experience working closely with academics to shape research, including co-authoring on a recent publication with myself and colleagues from Edinburgh, Glasgow and Oxford.

In this post, Steve talks to eCRUSADers about his experience as a patient, his involvement in the Patient and Public Group of Bowel Cancer Intelligence UK (PPG BCI-UK) and what he has learned about the system of cancer care and cancer data during his journey. Crucially, Steve highlights the importance of actively engaging patients and the public in the research process from the outset.

Over to you Steve, the floor is yours.

I was diagnosed with advance (stage 4) colorectal cancer in May 2013, the initial prognosis looked fairly bleak as it had already spread to my liver and both lungs. I’ve been very lucky since then thanks to an excellent team who’ve given me great care – a skilled specialist colorectal surgeon was able to remove my very large primary tumour without the need for a stoma, and my chemotherapy was so successful that the planned ablation operations were cancelled. Since then I’ve been on maintenance chemo which has kept things nicely under control with only 2 recurrences in 8 years, and I’ve had clear scans for the past two years. At my recent review when I told my oncologist I was targeting 10 years he replied “and beyond”!

I’ve been aware of the fractured nature of cancer care for most of the 8 years since I was diagnosed. I’m referring here to both clinical care and patient data. I should say that I have been fortunate in my care, but through my voluntary work I’ve seen the variations evident throughout the UK.

As patients, we really need a united cancer network. A network that ensures our doctors have knowledge of, and access to, the best care for their patients. A network where the data on cancer care is available across borders to ensure best practice is readily recognised and gaps in care are addressed quickly.

As one, solitary patient, I have no way of affecting change in healthcare, but I do try to help my fellow patients as much as I can. I offer support through my Strive for Five campaign with the aim to give hope to people with a stage 4 diagnosis, but my voice is too small to affect policy. This is one of the reasons that I was keen to volunteer with some of the charities. I’m a Campaigns Ambassador with Cancer Research UK and have volunteered for some time with Bowel Cancer UK. Although most of my work with BCUK has been focussed on patient support, I’ve been involved directly with a number of key campaigns including reducing the bowel cancer screening age.

Almost two years ago I started volunteering on the Patient and Public Group of Bowel Cancer Intelligence UK (BCI-UK), my first time on a formal PPG. BCI-UK is the umbrella body overseeing two important initiatives: the UK Colorectal Cancer Intelligence Hub which runs the COloRECTal cancer Repository (CORECT-R), and the Bowel Cancer Intelligence Programme which aims to improve patient outcomes by identifying and addressing variations in care. The excellent work of the team at BCI-UK is really highlighting how vital it is that we connect the various datasets around cancer care, so that researchers can interrogate these data and directly guide improved clinical care.

The adage states the definition of madness as “doing the same thing over and over again and expecting a different result”, surely that applies to cancer care – if we don’t review what’s working best, how can we hope to improve?

And it’s not enough to simply analyse the data, the findings have to be followed up and implemented, they can be used to educate medical and surgical practitioners to help them improve their care. This could give significant improvements in patient outcomes quickly, something that is urgently needed for all patients with advanced cancer who don’t have the time to wait for new treatments to come through research – we can improve how current treatments and procedures are utilised quickly and relatively cheaply.

It’s not always about new treatments, we need better use of existing therapies through recognising and sharing best practice.

I was lucky enough to be co-author on the recent paper “Creation of the first national linked colorectal cancer dataset in Scotland: prospects for future research and a reflection on lessons learned” which is a clear step in this direction by at least making the Scottish data accessible. That’s a start, now the real work begins by making the data work for us!

Some of the ways that this type of dataset could be used for colorectal cancer care could include:

  • Identifying hotspots across the country – good and bad – and addressing the gaps;
  • Maintenance chemo for long term care of stage 4 – what regimens get best balance of effect and lifestyle;
  • Impact of different support programmes on treatment success and tolerability;
  • Clear evidence to help drive significant investment to ensure early diagnosis of cancer

I am so pleased to see more Patient and Public Groups being set up for individual studies and study groups, this can only be a good thing. I would encourage all researchers to do this as a way of ensuring their work is truly patient-centric.

This really doesn’t have to be an arduous process. The BCI-UK PPG is a large group but that’s because of the volume and range of work it’s involved in. I’m a member of other PPGs relating to individual studies that only have one or two patients, and this can work well so long as those patients can represent more than their own individual experience.

The key advice for PPG involvement is the earlier the better, ideally right at the start, when you’re at concept stage, but you can bring us in at any point. The sorts of things a PPG can help with include the more obvious things like writing the plain English version of the proposals and reviewing manuscripts, but also giving insight into what the outcomes of the study should be and what may or may not be acceptable to a patient within the study.

I truly believe that we are achieving great improvement in the care of colorectal cancer, but so much more is needed, and the way forward is by collaboration between researchers, physicians and surgeons, with patients not just at the centre of the concepts, but actively engaged.

Working with administrative data in Scotland: A round up of researcher experiences

We’ve hit n = 5 in terms of eCRUSADer Researcher Experience posts! It’s not quite there in terms of a sample size for claiming any statistically significant findings but I thought that it was about time we took stock of them to see if there were any common themes emerging. So, that’s what this post will briefly do.

First, the key challenges that our researchers are outlined. Next, you’ll see some direct quotes taken from the posts- in particular lots of positive messages about carrying out research with administrative data in Scotland. Finally (and hopefully most usefully for you), a list of some ‘Top-Tips’ so that your administrative data journey runs as smoothly as possible!

Key Challenges

There were some common challenges that popped up throughout the five researcher experience posts which I try to summarise below.

    • Timing Timing Timing!!!

This was (as expected) a clear theme that emerged in each of the researcher experience posts. In particular, the time taken between PBPP approval and data access.

    • Administrative datasets can be messy…

They aren’t made available to you in a ‘research ready’ format (even though a huge amount of work will have gone on behind the scenes to get them ready) and they don’t come with clearly defined data dictionaries.

    • ECR short term contracts

The nature of ECR work can means that we are often on short term contracts. Together with the issues around timing, this can have knock on consequences for our career trajectories if we don’t get access to the data in time.

Key Messages

But, it’s not all bad! Although there are real challenges involved in accessing and working with administrative data, each of the researchers we have heard from have agreed on the massive potential for administrative data in research that ultimately aims to improve outcomes for society. Here’s what they had to say:

“Administrative data is an extremely powerful tool that will help you to answer the largest and most difficult questions faced by society”

“There is huge potential to use routine data to improve the way we do clinical trials and ultimately to improve outcomes for patients.”

“The ability to gain new insights from previously unseen data is something that should excite any researcher.”

“It can be a difficult and frustrating area to work in, but there are big potential payoffs, including large sample sizes and long-term follow-up, sometimes across many decades.”

“Working with administrative data is like learning to tame a dragon—albeit challenging, it is also exciting and rewarding!”

Top Tips and Solutions

    • Consider the time it can take to access the data and plan for this as far as possible

This is one of the issues that we are trying to shed some light on by putting together these researcher experience posts. It is rather tricky, not least because every project is different and has differing levels of complexity. However, there are some parts of the data acquisition process that are easier to plan for in terms of the time they will take. In particular, preparation of your PBPP application will probably take around 3-6 months. In terms of the time from submitting your application to the approval, this usually takes around 1-2 months. Knowing these timings means you can put them into funding applications etc. The harder bit is knowing how long it will take to get access to the data and we have heard from our researchers here that this can take up to three years! To try and understand how long things will take, it is well worth talking to your eDRIS coordinator about how frequently the datasets you have requested are linked for other projects. There may be some datasets that are harder to link than others or that have never been linked before. See if you can find any researchers who have previously worked with similar linked datasets and speak to them. They might have some good advice!

    • Have a plan B (and C!)

Unexpected things can (and probably will) crop up during your administrative data journey. And the longer things take, the more likely these unexpected events occur. The best thing you can do is have a back up plan. Better yet, have several! This may be using publicly available data, or settling for a subset of the datasets you have requested if there are particular hold ups with a specific dataset.

    • Prepare as much as you can before getting access to the data

There is actually a huge amount you can do whilst you are waiting for access to the data. You will still have to do a lot of data cleaning when you get access so one thing you can do is try and get as familiar as possible with the variables in the datasets you have requested. One idea might be to prepare a data dictionary (which includes codes) that you can ask to be transferred into the safe haven for when you begin analysis. You can also prepare some code for cleaning the data to some extent. For example, code to attach labels and value labels. You should also make sure you have done the relevant training (see the training section of the website for some useful links).

    • Acknowledge the limitations of administrative data

It is important to remember that administrative data has not been collected with research in mind. This can often mean that it wont contain all of the information you need to carry out the ‘perfect analysis’. What is important is that you are able to answer your research question with the administrative data, so be realistic. In some cases, it might be that your question would be better answered using survey data for example. 

    • Invest in the relationships with the key people involved in the data access pipeline

Get to know the people who are assisting you with data access and speak to people who have knowledge of the datasets you are requesting. Also, do both of these early on!

I hope this was useful in giving a summary of the researcher perspective of accessing and using administrative data in Scotland. It occurs to me that I haven’t yet contributed my own Researcher Experience post. I should say that overall my experience has been largely similar to those we have heard about. I gave a talk on my experience recently at a useMYdata event (if you haven’t heard of them then do check out the great work they are doing!). You can find my slides and the recording from the event here. The event was particularly focused around the researcher’s journey in accessing routine health data and how patients themselves are (or can be) involved throughout the process.

Researcher Experience: Dr Feifei Bu

In this first Research Experience post of 2021 we hear from Dr Feifei Bu, Senior Research Fellow in the Department of Behavioural Science and Health at the University College London (UCL). Feifei first started working with administrative data in 2014 when she worked with the National Pupil Database linked to Understanding Society survey data (UK Household Longitudinal Study). In 2015, she joined the University of Stirling and started working on projects that were using administrative extensively. In particular, she worked with Scottish Morbidity Record (SMR) data linked with the Social Care Survey (now Source) and Healthy Ageing in Scotland (HAGIS). From there, her interest in carrying out research using administrative data continued into her current position at UCL where she has worked with Hospital Episode Statistics (HES) linked with English Longitudinal Study of Ageing (ELSA). She has also worked with de-identified Whole Systems Integrated Care (WSIC) data. All in all, Feifei has been carrying out research using administrative datasets for around seven years.

Overview of my research

My work using administrative data has been mainly around health service utilisation. Collaborating with colleagues from Stirling and Dundee, we had looked at the cost of hospital admissions for people with cognitive spectrum disorders using SMR data. In 2019, I worked on a project on the relationships between social factors and health outcomes amongst older adults using ELSA linked with HES. We looked at how loneliness and social isolation were associated with the risk of hospitalisation related to fall, cardiovascular disease and respiratory disease respectively. More recently, I led a project looking at how patient activation (a measure of people’s knowledge, skills and confidence to manage their own health and wellbeing) was related to the usage of different health care services, including GP and non-GP primary care, elective and emergency inpatient admissions, outpatient and A&E attendances. At the moment, I am involved in an ESRC funded project looking at how indoor temperature is related to secondary care health service utilisation using ELSA linked with HES.


Summary of any challenges faced

Unlike survey data that are usually thoroughly cleaned and well documented, administrative data often require some extra work. Based on my own experience, for example, the episode order variable comes with the SMR or HES data cannot be taken for granted. In some cases, it could be important to further sort them into the correct order. Also, it may take some detective work to find out what a specific variable measures or how data were collected in practice and by who—this could be critical for data interpretation.

A unique strength of administrative data is that they offer objective and detailed measures that are usually unavailable in surveys. However, as these data were not collected for research purposes, there is often a lack of other critical information that we would like to take into account in our research. If data linkage is not possible, this is an even tougher challenge than the one above.

Due to data protection purposes, administrative data often need to be analysed in a safe setting, like a data safe haven. This can usually be accessed via a remote desktop connection, but in some cases, you might need to go to a secure access point that is not necessarily local. This will slow down your progress significantly. Some administrative data are stored in data warehouses, in which case researchers need to extract data that are relevant to them using programming language, like SQL. In other instances, researchers may not have access to the data warehouse directly and data extraction need to be done by a data analyst. This would require a lot of planning ahead as well as communication back and forth. Finally, data access is time-limited in most cases. It may ‘expire’ before getting everything published. This is something that needs to be taken into account when applying for data access.

Working with administrative data is like learning to tame a dragon—albeit challenging, it is also exciting and rewarding!


Thoughts for fellow and future eCRUSADers

As previous Researcher Experience posts have mentioned already, the access application can take a long time to go through. It is important to plan ahead especially if you are on a tight schedule—either for your PhD or other funded projects.

It is important to acknowledge the limitations of administrative data, in particular, the lack of critical information that need to be ‘controlled for’ in analyses. We should not rule out the possibility that survey data may serve our research purposes better. Here is a note to myself, and to be shared with eCRUSADers: our passion for data should not outweigh a solid research design.

Public Benefit Privacy Panel Timelines

Project: Social Care Survey linked to Scottish Morbidity Record

Preparation of PBPP application: – December 2015- April 2016 (approximately 4 months)

Submission to initial PBPP approval: April 2016 – August 2016 (approximately 4 months)

PBPP approval to data access: August 2016 – April 2018 (approximately 2 years)

Publications using administrative data

Bu, F., Abell, J., Zaninotto, P., & Fancourt, D. (2020). A longitudinal analysis of loneliness, social isolation and falls amongst older people in EnglandSci Rep, 10 (1), 20064. doi:10.1038/s41598-020-77104-z

Bu, F., Zaninotto, P., & Fancourt, D. (2020). Longitudinal associations between loneliness, social isolation and cardiovascular eventsHeart. doi:10.1136/heartjnl-2020-316614

Bu, F., Philip, K., & Fancourt, D. (2020). Social isolation and loneliness as risk factors for hospital admissions for respiratory disease among older adultsThorax. doi:10.1136/thoraxjnl-2019-214445

Hapca, S., Guthrie, B., Cvoro, V., Bu, F., Rutherford, A. C., Reynish, E., & Donnan, P. T. (2018). Mortality in people with dementia, delirium, and unspecified cognitive impairment in the general hospital: prospective cohort study of 6,724 patients with 2 years follow-upClin Epidemiol, 10, 1743-1753. doi:10.2147/CLEP.S174807

A conversation with eDRIS: Part 1

The Electronic Data Research and Innovation Service (eDRIS) is a small team within Public Health Scotland set up to facilitate access to administrative data for research. Sometime back in the beginning of 2020, I was invited along to talk to eDRIS about eCRUSADers at one of their Development Days. My main hope from the talk was to introduce eDRIS to the eCRUSADers platform and work out if we could come up with any ideas for improving the journey that researchers and eDRIS go through together, when applying to use and using administrative records in Scotland.

Based on the Researcher Experience posts on eCRUSADers at the time (and to this day), as well as personal and published evidence, a common theme is the lengthy wait for data access. As researchers (especially ECRs who are often on temporary research contracts), it is vital that we make the best use of the time from initial contact with eDRIS, right up until data access and beyond. To do this, we need to make sure that our interactions with eDRIS are productive and efficient for both parties. My belief is that if we are to identify any areas where this journey can be improved, both parties need to understand more about one-another’s work and roles in the process.

So, on the back of my presentation to eDRIS, we chatted about the prospect of beginning to create this understanding, by putting together a couple of blog posts in conversation with eDRIS.

In this first post, I am incredibly grateful to have Jules, one of eDRIS’s Research Coordinators (RC), to describe what a typical day looks like. Jules talks through his morning and afternoon, giving us an idea of some of the daily tasks he is involved in and providing an insight into the emails and requests he receives throughout the day.

For me (as a researcher who has worked with a number of RCs on different projects), this insight was very useful and as I read about Jules’s day I had lots of further questions to ask. Jules has kindly offered to answer those questions and these will be posted in Part 2- so stay tuned!

But first off, let’s hear from Jules on his account of a day in the life of an RC. Not quite sure what an RC’s role is? Have a quick read here.

A day in the life of a Research Coordinator

For statistical disclosure control purposes (SDC), the names used here are fictional but the events described are based loosely on real incidents.

Morning

Check for new emails, only 10 from last night, great, not bad for my 25 projects! Ok, first job, do we have any SDCs… Yes, two researchers on different projects have output requests, which one first? I think I’ll do Helen’s first, she usually has done a good job of explaining the outputs and making sure there are no disclosure risks. On top of that, she only has health data, so only one data controller requirements to worry about, result! So, lets log in to the safe haven…. now, what is my password? Oh yes, the access path has changed, I need a new password. Oh well, let’s get that password reset first, that might take up to an hour and means I can’t do the other SDC.

Ok, what’s next in the Inbox. Ahh, a ‘quick question’ from James, this should be easy. Nope, he wants to add a Census variable, so…let’s check the existing permissions… Just as well, the Health and Social Care Public Benefit and Privacy Panel (HSC PBPP) and Statistics Public Benefit and Privacy Panel (SPBPP) end date is in two weeks! So, I need to ask James to submit an amendment to add the new Census variable, as well as extend the study date, so that means an amendment to SPBPP and HSC PBPP, and maybe get him to contact the National Records of Scotland (NRS) data access team to discuss if it’s possible first? Yes, that would be best. So, I’ll just email James…

Ping!

Uh-oh email from HR, my own information governance (IG) training needs refreshed, perfect timing! That reminds me, does anyone on James application need their own IG training refreshed…. yep, James and two others are about to expire. Let’s see what the data controllers accept as valid IG training… So, Census accept Safe Researcher Training (SRT) as valid for five years, but HSC PBPP have this as three years… so it’s about to expire as far as HSC PBPP are concerned… I may just ask them to do the online Medical Research Council course (MRC), as that’s quicker, and we worry about the SRT in two years’ time… So, lets email James.

“Dear James, thank you for your request to add a Census variable. The first thing to do would be to discuss feasibility with NRS, I have added their contact details below. Let me know if you need any help with your approach to them. I also noticed that your project permissions are due to expire, and some of your colleagues named on the form have IG training that is also about to expire, but only as far as HSC PBPP are concerned. Each of these changes needs to be recorded in the permissions, so we need to submit amendments to both SPBPP and HSC PBPP for: adding a new variable, extending the study duration and updating IG training. I think the best way to do this is to submit amendments to the PBPP panels for the end date and updated training, then, after you have got the go-ahead from NRS to add the new variable, we can process another amendment to add the variable, as this will take longer. Please let me know if that makes sense?”

Ping!

“Dear Jules, I can’t access the safe haven, please can you help? Thanks, Bob”

Now, is the safe haven down? Nope… So where is the issue for Bob, he didn’t say…

“Dear Bob, sorry you are having problems accessing the safe haven. Please can you let me know at which stage you are having the problem? If you can access the safe haven page, are you receiving the 2FA PIN? If not…”

Ping!

“Dear Jules, please ignore my last email, I wasn’t on the VPN, my mistake! I am in now. While I am here, please can you release the tables in my study area? These are quite urgent, and I need them today.
Thanks,
Bob”

Ok, delete my email draft. Now, do I have my own password yet… Nope. Ok Bob will have to wait, next email. Now, John wants to know where we are with his data sharing agreement. Which project is that? Oh yes, here it is, so… the data sharing agreement was sent back to the Shire Commissioners for signing three weeks ago, good question, where is that? Nothing from them…. so, lets send an email chasing it

“Dear Phyllis, Hope you are well. We have had a researcher chasing…”

Ping! 

“…the data sharing agreement for 1234-5678. We returned to you for review and signature three weeks ago, please can you let me know when you will be able to get to it? Thanks, Jules”

Ok, lets email John

“Hi John, apologies for the delay, we sent to the Shire Commissioners three weeks ago for signing…”

Ping!

” and I have contacted them to ask for an update, I will let you know as soon as I hear from them. Thanks, Jules”

Ok, where was I? No safe haven access, so no SDCs for now… so, lets check the task list… Next job is an amendment to add a researcher to Siobhan’s HSC PBPP. So this is 1.5, great, under the proportionate governance rules issued by HSC-PBPP I can process these myself.
Lunch!

Afternoon

Ok, let’s get back to it…

Ping!

An email from HSC PBPP to researcher:

“Dear Prof. Urquhart,
The HSC PBPP panel have reviewed your application and have some further questions for you before your application can be properly considered. Please provide responses below the listed queries, and return to us within two weeks:
1) Please provide a clear data flow diagram
2) Please provide a Data Privacy Impact Assessment or evidence that one is not needed. Your data protection officer should be able to offer advice.
3) Please provide evidence of public involvement in the research design
4) Please ensure your lay proposal is clearer to those with no experience of research
5) Please ensure anyone named in 1.1 to 1.5 of the PBPP form have valid IG training, there is a list in the ‘Guidance for Applicants’ available from the PBPP website.
…”

Ah this is a shame, but at least chimes with the advice I gave to the Prof. that the panel would likely pick up on these issues if we didn’t address them before submitting the application. With tight funding cycle deadlines I can sympathise with the desire to get something submitted very quickly, sadly this often creates more work, now where’s that template response… send, done.

Now, has my new Safe Haven password turned up? Nope. Ok, next

“Dear Jules,
In order to avoid SDC, please can I share my safe haven screen with my collaborators? I would only need to do this using Zoom, and with a small number of colleagues, so nothing would leave the safe haven.
Thanks,
Gary”

Oh dear…

“Dear Gary,
Please do not do this!
Sharing the safe haven screen is not allowed in any circumstances, whether screen shots, screen sharing or in person. As a reminder, these terms are detailed in the user agreement you signed and are also on the statements you accept every time you log in to the safe haven. Any outputs from the safe haven must be assessed for disclosure, please complete the request form to help speed these assessments up.
Let me know if you have any questions.
Thanks,
Jules”

Ping!

“Dear Jules,
I submitted a draft PBPP to you a few weeks ago. I know the data flow is missing, but this is because I don’t yet know what data I need. I was hoping you could just submit it anyway, to get the ball rolling.
Thanks,
Rachael”

Ok… where’s that template…

“Dear XXXX,
Please note I have not submitted your incomplete PBPP; if I had, the panel would have returned to us asking where the missing sections were. It saves time if the required sections are completed, as indicated in the ‘Guidance for applicants’ available from the PBPP website. I believe I have already provided the minimum recommended changes for the PBPP to be able to consider your application.
In this case, if the panel do not know what confidential data you are asking for, they cannot assess the risks to the privacy of the individuals in the datasets, as they don’t know which individuals you are asking for data on.
Please let me know if you have any further questions.
Thanks,
Jules”

Ok, last thing, do I have my password?.. Yes!!! Now let’s finally look at Bobs urgent SDC then Helen’s.

Ping!

“Dear Safe Haven user,
We have experienced some network issues which means we need to shut down the Safe Haven for the rest of today. The Safe Haven will be unavailable from 1530 today until 1000 tomorrow morning. Please save any work and log off.
We apologise for any inconvenience caused by this unexpected outage.
Regards,
The Safe Haven.”

What time is it??? 1528….

“Dear Bob,
Unfortunately, the Safe Haven has experienced an unexpected error and I am unable to look at your SDC request today.
Please also note that, as you have Census data, we need NRS to carry out checks and clear the outputs before we can check and release. I know you asked for the outputs today, I am afraid this is not possible; however, we will aim to have the outputs checked within our three-day turnaround target.

Apologies for the delays,
Thanks,
Jules”

I’m going home…oh wait, I am home. (Please note we have flexible working, not all staff finish at 3:30 pm)

The role of an eDRIS Research Coordinator

The two main researcher-facing roles are RCs and Analysts.

The RC role is primarily project management. RCs are assigned a number of projects that they are then responsible for. The essence of the role is to enable access to administrative datasets for researchers, where that access is granted in line with confidentiality laws (e.g. GDPR, Data Protection Act). The RC is there to provide a service to researchers to enable high quality research. In practical terms, this requires the RC to make sure they are aware of current procedures (rather than knowing the jurisprudence around the common law of confidentiality!), so we can provide researchers with the best approach to meeting each data controller’s requirements within a legal framework. There are often multiple data controllers (even within a single organisation) and each data controller has their own requirements (this is why we sometimes ask researchers to provide the same information in slightly different ways). The sheer number of datasets, each with the quirks of their respective data controllers, requires a great breadth of knowledge of the administrative data landscape. As well as projects where data are provided as part of the service, there are numerous projects where the applicants need permissions only, to do all sorts of things, ranging from setting up clinical trials to changing the way health audits are carried out.

The Analyst role is distinct from the RC role and is primarily tasked with creating the extracts for the researchers, although there are often discussions with analysts at early stages to determine feasibility of the requests. The eDRIS analysts have in-depth knowledge of many of the common health data sets, so are a good source of information, for both researchers and eDRIS RCs.
For statistical disclosure control purposes (SDC), the names used here are fictional but the events described are based loosely on real incidents.

Are data repositories the future? An eCRUSADers conversation with DataLoch

In this post, we will be discussing a very exciting project called DataLoch. DataLoch is a repository of linked health and social care administrative data sets from Edinburgh and the South East of Scotland. It was established in 2019 under the Data Driven Innovation (DDI) programme funded by the Edinburgh and South East Scotland City Region Deal. The programme is led by Professor Nick Mills at the University of Edinburgh but the programme is a collaborative partnership between NHS Lothian, Borders and Fife, Health and Social Care Partnerships, the University of Edinburgh, patients and the public. The ambition for the DataLoch repository is that it will help to solve some of the pressing health and social care challenges being faced in Scotland.

At present, the data linkage infrastructure and governance in Scotland is set up in such a way that bespoke linkages are created for the purposes of specific research projects that will be destroyed at the end of the project lifecycles. In contrast, within a research ready data repository like DataLoch, the access permissions to use and link data persist and expand over time without destruction. Such persistent curation increases the efficiency in creating data assets and greatly reduces the time required to provide data for projects. As is currently the case for bespoke linkages, all applications to DataLoch will go through an approvals process to ensure that the processing of the data is done in accordance with the required data protection principles, maintaining public trust and privacy of individuals’ data.

I was very excited when the DataLoch team said they would be happy to talk to eCRUSADers about their work because from my own experience, and from listening to the experiences of others, it appears that research ready data repositories may address some of the challenges that we eCRUSADers face. So, if you are interested in finding out about how such repositories might help, or if you are a researcher hoping to work with linked health and social care data in Scotland: read on!

Q: How will DataLoch help solve the problems researchers face around timing for access to data?

Q: Will DataLoch allow for flexibility in research proposals?

Q: Have you carried out any work with patients and the public to find out how they feel about storing their health and care data indefinitely?

Q: Do you envisage DataLoch extending to other parts of Scotland in the future?

Q: What have been the biggest challenges you have faced when setting up DataLoch?

Q: Where will researchers access the DataLoch data? Will remote access be an option?

Q: Where would researchers find the data dictionary for the data sets and variables included in the DataLoch?

Q: Is the plan for DataLoch to continually update the data to contain the most recent data?

Q: When can researchers hope to apply for and access the DataLoch?

Solving the current challenges around conducting research with administrative data

Q: As eCRUSADers, one of the main challenges we face is that we have limited time. This makes accessing administrative records for research tricky because in many cases this can take a long time (see some of our Researcher Experience posts for examples). How will DataLoch help solve this?

“DataLoch’s governance model is agile and based on agreements with our data controllers based on a model of precedence. This means with every project our approval process is quicker – meaning researchers no longer have to experience long waiting times – while remaining robust and in line with GDPR. Research will be reviewed through a Caldicott panel and the Safe Haven delegated ethics panel. Whilst there are no fixed timescales as each project is unique, our average turnaround (from application to data delivery) is currently 3 months.”

Q: One of the other challenges Early Career Researchers face is the exploratory nature of their research. For example, in a PhD project, the researcher might set off with one research question in mind but after understanding the data more, they realise that there might be a more useful/relevant/beneficial research question they can answer. Will DataLoch allow for flexibility around the research proposal?

“There are two ways we can enable flexibility for exploratory research. Firstly, we do allow applications that are explicit about their exploratory nature. Applicants would then need to clarify the specific research nature when the exploration phase is complete. The second route a researcher could follow would be via an explicit proposal which, if it changes to accommodate a new research interest, would need a second research application to be approved.”

Work with patients and the public

Q: Of course, any use of patient and public data in research should include their views and input throughout the process. Have you carried out any work with patients and the public to find out how they feel about storing their health and care data indefinitely?

“DataLoch have a public reference group which meets regularly and is part of our governance structure. The Public Reference Group have been extremely supportive of the DataLoch project and actually expressed some surprise that health data was not already more routinely linked. They are especially interested in ensuring easy to understand transparency of DataLoch’s work and that the data is being used in areas of public priority.

We would welcome volunteers to join this group, please contact us if you’re interested. We recognise that public perception does change over time and have a learning loop built into our structure that allows us to be sensitive to public opinion.”

Looking forward and reflecting back

Q: The Scottish Government’s initiative, Research Data Scotland, is trying to set up a similar model but on a Scotland wide level. Do you envisage DataLoch extending to other parts of Scotland in the future?

“Research Data Scotland have a fantastic national ambition and we would love to work with them as this idea develops. One of the points of difference for DataLoch is that we work at a regional level working closely with local clinicians to understand local context. This would be difficult to scale at a national level though there are interesting federation models that we would like to explore. Equally the granularity of the data we provide would be difficult to scale at a national level. It is also worth noting that our rich regional level data can contribute to answering some critical nationally-relevant questions.”

Q: What have been the biggest challenges you have faced when setting up DataLoch?

“Our greatest challenge has become a significant point of difference for us, we have created a virtual team that includes NHS clinicians, analysts and technical support as well as University of Edinburgh expertise. Working across boundaries has been tough but ultimately has created something unique and agile gaining the benefits that come with the expertise from both NHS and academia.”

Practical questions around using DataLoch data

Q: Where will researchers access the DataLoch data? Will remote access be an option? Safe settings are few and far between!

“Our preference is that researchers access the data via the National Safe Haven which can be done remotely.”

Q: Where would researchers find the data dictionary for the data sets and variables included in the DataLoch?

“The latest version is available on the website here. This dictionary corresponds to the current COVID-19 data set. Note that the website is under construction and some pages may move”

Q: Is the plan for DataLoch to continually update the data to contain the most recent data? Once again, this improves reproducibility of results and research transparency.

“Yes. DataLoch will be continually updating the data according to data source lag times, we will be managing version control to enable reproducibility of research as needed. We recommend researchers save their own coding and statistical analysis.”

Q: When can researchers hope to apply for and access the DataLoch?

“You can do so today, our current dataset is focused on COVID-19 but please do register for our DataLoch release newsflash via our website to receive updates.”

eCRUSADers: one year on

I still can’t quite believe that it has been one year to the day since I launched the eCRUSADers website with the first Welcome post.!

For those of you who don’t know, before launching the platform, I had been contemplating the idea of eCRUSADers for some time whilst reflecting the challenges I faced when attempting to carry out my PhD research using administrative data. I’d also had many conversations with other researchers who seemed to be in the same boat. When I started my new post-doc position in Edinburgh, I jumped straight into the ‘waiting for data’ pool again. It was really this that spurred me on to finally set up something tangible. It would be a place for other researchers to go to learn from the experiences of others and to find out useful nuggets of information.

A huge amount has happened since then and little did I know back in February that the impending pandemic would shine such a bright light on the use of administrative data for research purposes. In the last six months, countless COVID-19 studies using administrative health data have emerged, hopefully paving the way for the continued use of this data to generate public benefit.

What has been achieved?

  • 4 Researcher Experience posts
  • 3 People Make Data posts
  • 3 Other posts
  • 2 Reflections on courses/training/conferences
  • 44 subscribers
  • Approximately 2,400 page views
  • £1,000 funding from the Welcome Trust Institutional translational partnership award (iTPA) Hub to set up an eCRUSADers working group.
  • Invited to give a presentation to the Electronic Data Research and Innovation Service (eDRIS) at their Development Day and have an ongoing dialogue with them about eCRUSADers.
  • Statement of support from the Scottish Centre for Administrative Data Research (SCADR) and Chief Statistician Roger Halliday.

Since the platform was launched in November 2019, I’ve published a combination of Researcher Experience posts, People Make Data posts, reflections from courses and conferences and other bits and pieces. It hasn’t always been easy to squeeze in time for eCRUSADers alongside my role within the Edinburgh Health Economics group but I have done my best to spread the word and get researchers from around Scotland to contribute. This could easily be a full time job! Overall, I am pleased with the progress to date and have thoroughly enjoyed progressing a platform that I believe will be so useful for future early career researchers.

What happened that I didn’t expect?

Aside from COVID-19, when I set up eCRUSADers I hadn’t planned the People Make Data series. The idea for the series came about as I started trying to paint a picture of the administrative data landscape in Scotland and naturally that involved including patients and the public in that picture. That process helped me reflect on my own practice as a researcher and recognise the invaluable contribution that patients and the public have in shaping research. I think eCRUSADers provides a great place to share that message and point researchers towards useful information and resources regarding public and patient involvement.

What is still to do?

My ambitions for eCRUSADers are big and I have lots of ideas in the pipeline for expanding the information that is contained within the platform! I plan to keep chipping away at this and look forward to what next year will bring.

I still have to use the funds from the iTPA Hub. I had planned to arrange a number of face to face meetings and an event to formalise an eCRUSADers working group but COVID-19 has unfortunately put that on hold. But watch this space!

Finally, I’m always looking to expand the number of Researcher Experience posts so if you are a researcher working with Scottish Administrative data then please do get in touch (Elizabeth.lemmon@ed.ac.uk).

Thank you!

I just wanted to say a huge thank you to all of the contributors to the blog through the last year and thank you to everyone who has shared, subscribed and followed the work eCRUSADers. Here’s to another year and to the future sharing of information and experiences about carrying out research using Scottish administrative data!

People Make Data: Part 3

I am very excited to share this post with you today! It is the third of our People Make Data series and this time, Pete Wheatstone talks to us about sharing patient data from a patients perspective.

I had the pleasure of meeting Pete at the end of 2019 at a useMYdata workshop in Leeds, where we got to talking and realised that we had in fact already met on Twitter?! Pete is a former cancer patient and a member of useMYdata (who we heard from in People Make Data: Part 2). Pete is an extremely active and experienced Patient and Public Involvement (PPI) representative for a number of data research programmes. These include, the UK Colorectal Cancer Intelligence Hub Patient Public Group; Chair of the DATA-CAN (the HDR UK Hub for Cancer) PPIE Group; National BOwel Cancer Audit Patient & Carers Panel; IQVIA Patient Group, the National Institute for Health Research (NIHR) Royal Marsden/ICR Biomedical Research Centre (Digital Theme); Cancer Research UK Patient Data Reference Panel; the European Institute for Health Innovation Through Health Data (i-HD) and an association with DataSavesLives.eu (through i-HD) – to name but a few!

Pete’s contribution to the promotion of the safe use of patient data in research is second to none and it is a real privilege to have him offer his insights in his post. In his neat analogy that follows, Pete helps us really get to the bottom of what sharing patient data is all about.

“We’ve been sharing information since before language was developed”

At a most basic level, creatures that live in groups, from insects to humans, share information between themselves such as the presence of danger and the location of food. This is because it is a good method of protecting the group and helping it to flourish. Whilst living in caves, our gestures, grunts and groans gradually became more sophisticated allowing us to share more detailed information that evolved into language. However, even today ninety percent of our communication (and therefore information) is still non-verbal. You can tell things about a person just by such things as their facial expressions, how they sit or move their body, their tone and volume of voice, the level of eye contact. We all sub-consciously and consciously do this to enhance the communication of our thoughts and feelings. It helps us to form relationships and friendships. Surely, acquiring information is the reason we send our children to school and why we study. We exchange information about our  thoughts and our feelings when we socialise.

But when it comes to personal medical information this is, of course, a little bit different – or is it? Whilst many of us like to share some of this information, there may have some aspects that we feel we want to keep to ourselves. Of course, it is our right to keep that information to ourselves if we wish or tell a trusted person in confidence.

Medical data is just bits of information held electronically. But information, when held as data, can be easily shared with others for both benefit and, potentially, disadvantage. However, if that data is anonymised (in other words all information is removed that might identify us) and it is added to information from thousands of other people, might we hold a more relaxed view? And if that data was only accessible by trusted people, authorised to access that information only for a very specific and approved purpose should we have any substantial concern?

As current or future patients, we benefit from improved treatments and services because previous patients shared their medical information. Do we not, in turn, have a moral obligation to share our information to benefit our children, grand-children and future generations of humanity?

I believe that, providing the current legally required data security controls in place and those that hold the data are open and transparent (about who data is accessed by and why), there is no logical reason why we should not share our anonymised medical data – for the benefit of us all.

Researcher Experience: Dr Drew Altschul

With all that has been going on it has been a wee while since we heard from a researcher who is in the thick of working with administrative data in Scotland. In this Researcher Experience post, we hear from Dr Drew Altshul, Research Associate in the Department of Psychology at the University of Edinburgh, who has been navigating the administrative data landscape in Scotland for around two years. Drew works with a large linked data set of the Scottish Mental Survey 1947, 36 day sample, Scottish Longitudinal Study (census data), Prescribing Information System (PIS) and Scottish Morbidity Record for Mental Health Inpatient and Day Case (SMR04).

In Drew’s account of working with administrative data, the familiar challenges of timing, unforeseen circumstances and working in the safe setting, rear their heads. However, like the other researchers we have heard from, the ‘seeing the glass half full’ attitude and optimism for the need to press on in spite of these challenges endures. In particular, Drew points out the useful discoveries him and his colleagues made whilst waiting for data access, which would ultimately improve their research output in the long run. I think this point rings true for me especially, after all, eCRUSADers wouldn’t exist if it weren’t for the wait for data.

Over to you Drew:

Overview of my research

I’ve yet to do much of work with our main variables of interest, as we only recently were granted access to a few of the data sets we requested. However, while we were working on obtaining and waiting for access we followed some side avenues in part to prepare ourselves for working with the data, and in part because we thought of research questions that we thought were interesting in their own right. For example, we are interested in how early life socioeconomic conditions, commonly represented by the father’s occupational social class, relate to mental health later on in life. However, our data set is based on the participants of the Scottish mental survey 1947; these individuals were all born in 1936, and because of World War II, reports of fathers’ occupations from censuses carried out during participants’ early lives are unreliable, not representative, and often missing. In order to improve on our data set, we dug deeper into the data we were aiming to link, pulling out additional, historical occupation information, and coding these data ourselves. This in turn lead to a machine learning approach to classifying historical social class data, which can be used in the future by people working with historical social class data. So it goes to show how much interesting, useful work you can wind up doing along the way!


Summary of any challenges faced

The process is long and convoluted, and at seemingly every turn. I was fortunate because I joined the project relatively late, although when I joined we thought we would have access to the data in a few months’ time, rather than two years later. I did what I could to help with the application processes, but ultimately this work predominantly falls on the shoulders of a single person, and most of one’s time in this area is not spent working on forms, but waiting for other people to get back to you.

A large amount of time and effort goes into processing and preparing data before linkage, but that does not mean that the data are clean and easy to work with once you get a hold of them. You are likely going to need to spend significant time cleaning and otherwise processing your data before you can analyse them.

There are advantages to having to layout analyses in advance during the application process: essentially, this forces you to pre-register your work, which is an important step in doing reproducible science. However, a run-of-the-mill pre-registration has considerable flexibility, and this is not so much the case with the analyses we plan for our data. All output must be checked for privacy and security concerns, so if we want to tweak an analysis or run a sensitivity analysis, for instance at the request of a reviewer, every different analysis that we want to take out of the safe haven environment needs to be checked, and that process can take weeks.


Thoughts for fellow and future eCRUSADers

You ought to think very carefully about timing, in particular you ought to expect significant delays. If possible, try to plan for multiple scenarios, and make sure you have meaningful work you can do while you wait out the access process. The processes for accessing data are supposedly being streamlined and improving, but it is worth investing in your relationships with the people along the data access pipeline, as they are best served to help you manage your expectations.

It can be a difficult and frustrating area to work in, but there are big potential payoffs, including large sample sizes and long-term follow-up, sometimes across many decades. These are types of data that sometimes cannot be obtained in any other way, and this allows for novel, meaningful research questions to be asked and answered.

Public Benefit Privacy Panel Timelines

Preparation of PBPP application: 01/06-2018 – 21/08/2018 (about 12 weeks)

Submission to initial PBPP approval: 05/10/2018 (about 12 weeks)

PBPP approval to data access: 16/06/2020 (about 1 year and 6 months)

People Make Data: Part 2

In the second of our series, ‘People Make Data’, we hear from use MY data, an independent UK movement that was set up in June 2015 by a number of patients, carers and relatives to address the slowdown in cancer research in the wake of the Care.data programme. Since then, the remit of use MY data has grown and they now cover all types of patient data.

Ailson Stone (Coordinator) and Chris Carrigan (Expert Data Adviser) are part of the use MY data Secretariat, which works on behalf of the use MY data members. Alison and Chris have kindly put this post together to share with eCRUSADers a little about how use MY data started, the work that they do and most helpfully, some key messages for early career researchers to take away.

Involving patients and maintaining transparency are paramount to ensuring public trust. Any researcher who is working with patient data should make sure they do just that and a great place to start is by looking at the great work being carried out by use MY data. The importance of doing so has been duly amplified by the current COVID-19 pandemic and there is a need to learn from past mistakes at such a time.

Thank you very much to Alison and Chris for sharing this post with us.

Bringing the patient voice to discussions about patient data

Back in the middle of 2016 NHS England announced the closure of the Care.data programme.  You might wonder why this is relevant to eCRUSADers, or indeed why we’d start a blog that way.  We should explain.

In October 2013 NHS England set out their intentions to link data, for the first time, from different NHS providers spanning primary and secondary providers, “supporting studies that identify patterns in diseases, responses to different treatments, and the effectiveness of different services.”

However well-intentioned the concept, by February 2014 ministers had halted the programme, following several media stories about data being sold and amidst concerns about lack of awareness, lack of consultation and lack of clarity about how the data would be used.

By 2015 around 1.5 million patient records were flagged as opting out of Care.data.  The loss of public trust, negative media coverage and huge risk-aversion by data controllers, saw data access for researchers grind to a near halt or actual halt.

At the National Cancer Intelligence Network conference in Belfast in June 2015 the widespread dissatisfaction amongst researchers and patients came to a head, in a panel Q&A with the chief medical officers of the UK.  Data access for cancer research had effectively stopped.  But researchers needed to use the data, and patients wanted their data to be used.

The birth of use MY data

In response to these concerns, patients, carers and relatives gathered together, over a lunch time session.  The session was jointly hosted by Cancer52, Cancer Research UK and the National Cancer Intelligence Network.

Its focus was on how current cancer patients could help turn their data into the best outcomes for future cancer patients.  ‘Donate your data’ was proposed – an organisation where patients would willingly give their data for this purpose.  The patients attending the session showed unanimous support for the concept of donating their data.

A Working Group discussed the practical ways forward.  Most felt that the name ‘Donate Your Data’ was not accurate – as cancer patients said their data had already been taken, and the focus should therefore be on how their data would/could be used.  This led to the name change of use MY data. The movement rapidly expanded to include patients, relatives and carers from all disease areas.

From its beginnings in 2015, use MY data has evolved through a rolling programme of engagement and communications.  We have hosted at least two patient data workshops each year, alongside a programme of campaigns, networking, and presence at national events.  We are increasingly being asked to 1) advise other organisations about patient engagement and 2) engage with organisations who hold patient data.

Most recently we have moved to deliver a series of webinars, open to all, but designed and delivered by and with our members.

“The strength of use MY data is the multiple patient voices that it brings to the discussion.”

Since the outset, our members have stated some clear, common, basic principles about how patient should be used.  But with a wide and varied membership, not all members agree on all areas, as you might expect.

We very much see this spectrum of views as an asset, as we believe that we need a diverse set of views to help in discussions and decision making.  So, whilst some traditional organisations might see conflicting views as a something of a challenge, we see this as a real benefit.

There are several principles which underpin use MY data and are about data being used for the benefit of patients and society:

  • Transparency
  • Simple access to data
  • The patient voice
  • Recognition of the patient (citation).

“As a data user, most of our work relies on using data – it’s important we are transparent about how we use patient data.”

Anyone using patient data must ensure that this happens in a way that will engender trust.  It needs to be done openly and transparently, be subject to challenge and allow individuals a choice in how their data is used.

The concept of transparency has grown in prominence but translating the concept into action is often seen as difficult.

As a researcher, what does it mean to be transparent?  use MY data has produced a checklist, which we have encouraged people to use:

  • Accessible – easy access to information
  • Understandable – the right language for the audience
  • Relevant – addresses audience concerns
  • Useable – in a form that meets the audience needs
  • Assessable – is checkable/provides sufficient detail
  • Being as proactive with ‘bad news’ as with ‘good news’
  • Being timely with communication.

A particular frustration for members is the inconsistency about how controls, which are placed around patient data, are interpreted and applied.  If all parts of the UK are subject to the same laws (the General Data Practice Regulation (GDPR) and Common Law), why do the different parts of the UK implement different policies about data access?

“Is the patient voice heard enough so that we learn from patient’s experience? To be honest, no.”

We believe that the patient voice should be included in all discussions about patient data and are actively working to make this happen.

It can be hard for an individual voice to be heard, so one very practical thing that use MY data does is to collate the voices of patients in response to national consultations.  That has included consultations on topics of Artificial Intelligence, Trusted Research Environments and Private Healthcare Information and from organisations including the Information Commissioners Office, the National Data Guardian for England and the MHRA.

Because it has a philosophy of positive engagement and co-design, use MY data is seen increasingly as a trusted group through which patient opinions, views and indeed speakers can be sourced.  Another practical thing we do is to work with the organisers of large events focused on patient data, and lobby for patient speaker(s) to be included.

Similarly, we highlight engagement opportunities to use MY data members – to sit on groups, panels and committees that are concerned with patient data.

“I think the policy makers should get out the message of the benefits of using the data and the controls around that data so that people feel better reassured.”

We have created a library of ‘case studies’ where patients, relatives and carers speak direct to camera, highlighting the benefits of using patient data correctly.  We have seen these short videos being used in several different places, in the UK and beyond.

Then there is the point about recognition.  Early on our members created the Patient Data Citation.  The Citation acknowledges the use of patient data in analysis or research, highlighting that research is only possible because of patients:

“This work uses data provided by patients and collected by the NHS as part of their care and support”

Public Health England began to use the statement and it was then adopted by Understanding Patient Data, who were instrumental in spreading the message.  It is now seen as a standard and has been widely adopted by national bodies, academia and commercial users.

“We need data and tissue and protein samples to enable us to do research which will lead to earlier diagnosis and better outcomes.”

Another example of action we have taken is The Issue with Tissue  campaign.  At our May 2018 workshop, members discovered that there is an extremely low use of donated human tissue samples – approximately only 15% of samples are ever used.  Our members wanted to understand this, highlight areas for improvement and lobby for these improvements to be made.

We are working jointly with partners at the Medicines Discover Catapult and Incisive Health on this campaign, in which patients’ voices are directly influential.  We have seen these voices and the report beginning to be used widely, despite the pressures of the pandemic response.

“Joining use MY data has helped me understand better the importance of my data. Research and all data should be shared.”

Our members are patient advocates who are either patients, relatives or carers.

We have another layer of membership – our associate members who are united by their interest in supporting our work. This are clinicians, researchers, charity workers, academics, public and commercial sector workers.

As an inclusive movement, we encourage new members from all backgrounds, so that we can collectively build confidence in the use of patient data, to save lives and improve outcomes.

Our current areas of focus are around the uses of data in relation to the COVID-19 response and in particular whether the positive advances made in terms of data collection, linkage and access in all parts of the UK can be retained in a safe, open and transparent manner, improving the experience of researchers with support of patients.

“We need to be clear and concise on the benefits, risks and how these will be managed, creating a clear strategy for engaging patients and the public.”

We will only realise the potential benefits of patient by ensuring the patient voice has a fundamental role.  And all this has to be done in an open and transparent way.  That remains the aim for use MY data.

As one delegate from a recent workshop commented; “Despite the challenges, I think more could be done to help researchers and less blaming of them please.”

So, if we had to summarise some key points for early career researchers, we would give three things to remember and take away:

  1. Don’t be afraid – the patient voice can often be the solution, not the problem
  2. Be transparent in all that you do – the benefits of transparency outweigh the difficulties – and communicate this clearly.
  3. Whenever you use patient data, please Say what you do, and do what you say.

 

Research Data Scotland: A conversation with Roger Halliday, Chief Statistician (Scottish Government)

In this post, we hear from Roger Halliday, Chief Statistician at the Scottish Government and lead on the new Research Data Scotland (RDS) service. RDS aims to make better use of existing administrative, public sector data in Scotland, with the ultimate goal of improving the well being of the people of Scotland.

We managed to catch up with Roger and ask him a few questions on the current progress of RDS, how COVID-19 has impacted this progress, how researchers can engage more with government, and much more. Thanks to Roger and his team for answering our questions!

If you want to jump to a specific question you can click on the questions below. Otherwise, just keep scrolling!

Q: What are the main challenges being faced in Scotland in terms of reaching its full potential for producing quality research using routine data?

Q: How do you think Scotland can contribute to research using administrative data?

Q: How will Research Data Scotland help to overcome those challenges?

Q: How has the development of RDS been impacted by COVID-19?

Q: How are you engaging with the public during the set-up of RDS?

Q: Are there any other countries in particular that you think Scotland can look to as an exemplar in this area?

Q: How can we promote collaborative working between academic groups and analysts working within the public sector & government? 

Q: What are the main challenges being faced in Scotland in terms of reaching its full potential for producing quality research using routine data?

Scotland has been enabling high quality research in a secure and ethical way for many years. However, it can be unclear what public sector data is available for use in research and this data can be of unknown or poor quality. It can also take too long to access data with it being dispersed between and within public sector organisations.

Q: How do you think Scotland can contribute to research using administrative data?

Scotland has a rich and varied data ecosystem as well as access to a unique talent pool with the skills and experience to allow us to maximise the value of our data and deliver award-winning research projects. Thanks to investment from the Edinburgh and South East Scotland City Region Deal we are also investing in a 10-year data-driven innovation programme.

The Scottish Government, alongside Scotland’s leading academic institutions and public bodies are committed to facilitating secure data sharing for research in the public good. We want to work with data controllers and users to improve the quality of data for research while also making access more cost-effective, faster and more streamlined. At the same time, we need to ensure there is ongoing trust, support and feedback from the public.

Q: How will Research Data Scotland help to overcome those challenges?

RDS’s overall mission is to improve the economic, social and environmental well being in Scotland by enabling access to, and linkage of, data about people, places and businesses for research in the public good.

To underpin RDS’s mission, we have outlined the following principles:

  • RDS will only enable access to data for research that is for the public good
  • RDS will ensure that researchers and RDS staff can only access data once an individual’s personal identity has been removed
  • RDS will ensure that all data about people, businesses or places is always kept in a controlled and secured environment
  • RDS will only create a dataset if it is requested for a research programme or study that is in the public good
  • All income that RDS generates will be re-invested into services to help researchers continue to access data
  • Firms that access public data for the public good through RDS will share any commercial benefits back into public services
  • RDS will be transparent about what data it provides access to and how it is being used for public benefit

In the development of RDS, as we are working through the service design, we’re speaking to researchers across Scotland to understand and test out approaches to addressing these challenges. These solutions may take some time to be realised, but RDS will put us on the right path and take leadership in seeing this through.

Q: How has the development of RDS been impacted by COVID-19?

In response to COVID-19, we have accelerated the development of RDS by delivering the COVID-19 research data service. We have achieved this by bringing together expertise, resource and capabilities from a range of existing data-led programmes across the public sector and by working closely with universities across Scotland. This service aims to provide consolidated guidance on accessing data, information governance and the analytical environment to support COVID-19 related research. It accelerates the work that was already underway to support the development of Research Data Scotland as well as ADR Scotland. This is an initial RDS baseline service to support Scotland’s response to the pandemic and will evolve as the management of the current public health emergency progresses.

RDS is building on and repurposing the existing data infrastructure in Scotland. This includes resources, expertise and capabilities offered by our service delivery partners and partner organisations, including Public Health Scotland (eDRIS), National Records of Scotland, The Edinburgh Parallel Computing Centre and HDR-UK, alongside accredited facilities, such as the Scottish National Safe Haven while also working in partnership with Scottish Universities.

Once fully established, RDS will provide a single point of access to help researchers access a suite of key data from across the public sector.

Q: How are you engaging with the public during the set-up of RDS?

We want to ensure that there is ongoing trust, support and feedback from the public as we build the service with a flexible and modular approach. To do this, we want to continue to gather feedback on its design and implementation from data controllers, users and the general public as we build the service. We have set-up a website – ResearchData.Scot – where we will share information on the new service as well as opportunities for the public to provide input as they become available. There is a wealth of useful information and resources already provided by the eCRUSADers platform and our intention is that RDS will complement the valuable work already done in this space. We are also working with the Scottish Centre for Administrative Data Research (SCADR) public panel to seek their feedback on RDS’s approach and objectives.

Q: Are there any other countries in particular that you think Scotland can look to as an exemplar in this area?

We have looked at a range of other countries including Wales, Singapore, Australia, Canada, Denmark and New Zealand in order to understand and learn from their experiences in developing solutions to similar challenges. This has shown us that a successful data-led research programme must be built with the support of data controllers and users throughout its development. Any new service must be cost-effective, faster and more streamlined and there must be ongoing trust, support and feedback from the public established throughout.

Q: How can we promote collaborative working between academic groups and analysts working within the public sector & government? 

The Scottish Government and SCADR form the ADR Scotland partnership that aims to enable government policies and interventions to be informed by the best evidence available through the use and analysis of administrative data.

Specifically, ADR Scotland is developing a new model with the creation of curated, themed data sets that are maintained and used repeatedly to answer new and different questions. This is a sustainable research resource that represents greater value for money, and more efficient use of data already collected.

Research is divided into key themes called Strategic Impact Programmes (SIPs) which are designed to address the key social challenges identified in the Scottish Government’s National Performance Framework (NPF), as well responding to policy priorities in the UK more broadly. We are committed to sharing our research findings in a form that is easily digestible and useable by government policy makers and wider society, as well outputs for academics and the data community.