Author: Elizabeth Lemmon

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.


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…


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?”


“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…”


“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.

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…”


“…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…”


” 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.


Ok, let’s get back to it…


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.

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.


“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.

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.

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


“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.
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,

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 (

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 (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 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 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  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.


People Make Data: Part 1

 “Ultimately, health data is collected by people, from people and for people. If researchers want to be trusted with data, we should trust people to help us shape the rules so that the data revolution in healthcare benefits everyone.” Natalie Banner, Nature Medicine, 2020.

This quote, from Understanding Patient Data’s (UPD) Dr Natalie Banner, reminds us that people’s data, i.e. patient data, is a means to an end and not an end in itself. In this post- Part 1 – we speak to UPD, a Wellcome Trust, Medical Research Council and National Institute for Health Research funded body, who’s work focuses on health data that is used for reasons other than individual care and without explicit consent. In particular, UPD “provide objective information about how patient data is used and bring the views of patients and the public to policymakers and data holders, to ensure data is being managed and used in ways that are worthy of public trust.”

The post is the first of a series of posts, in which we will hear from UK based organisations who are working in this area and patients themselves.

Background: using patient data in research

Patient data, for example hospital records and GP records, is collected as part of routine National Health Service (NHS) care. They constitute one of the largest sources of health data in existence. Over the years, researchers, policy makers and others have sought to harness their potential in carrying out evidence-based research, seeking to enhance our understanding of disease, improve patient care and service delivery. At no other time has using patient data for research been more in the spotlight than under the current COVID-19 pandemic.

As researchers, we have a duty to ensure that we recognise the individuals who sit behind that data. But even more than that, we should seek to involve patients in our research, because really, who understands what they have experienced better than them?

As an Early Career Researcher (ECR) working with patient data, and coming from a non-clinical background, appreciating the individuals behind the ‘numbers’ is not something that my training in Econometrics prepared me for. Of course, my primary motivation for pursuing my career in health research is to make a difference to individuals lives. Nonetheless, it is all too easy to become buried in the methods, producing fancy charts and output displaying significance stars, that the people behind the numbers become blurred in the background.

The use of patient data by social scientists and ECRs – who are often limited in resources, contacts and time- is becoming more common. With this comes an increased need to ensure that those researchers know how to recognise and include the patient voice in their research, and how to be transparent about their uses of patient data.

In what follows are some questions and answers from UPD’s Communications Officer Grace Annan-Callcott, who kindly agreed to talk to eCRUSADers about using patient data in research and in particular about public/patient engagement.

A conversation with Understanding Patient Data

How much and what sort of public/patient engagement work does UPD do?

“We tend to commission public engagement work on issues around patient data. Our aim is to feed the insights we get through to policy and practice”. 

Grace pointed me to a couple of recent things they have been working on. Firstly, the Fair Partnerships Report, one of UPD’s “largest pieces of engagement work to date, which looked into what the public thinks about different kinds of businesses and organisations using NHS data”.

Secondly, a new project with the National Data Guardian and Science wise, which will explore ‘public benefit’ and shape new guidance to make public benefit assessments more consistent across both health & social care”.

So, how do patients feel about the use of their data?  

“I’d suggest having a look at the fair partnerships report, or this deck where we collected lots of public attitudes research together in one place. It needs an update with a few bits of recent research, but many of the key messages still stand”.

The Fair Partnerships work was a mixed methods public engagement programme consisting of round table discussions, citizen’s juries and an online survey (completed by just over 2,000 adults from across the UK). A key finding of the report was that “all NHS data partnerships must aim to improve health and care”. I believe this point will resonate with many ECRs, who often have difficulty in demonstrating “How will your research benefit the public?” Will our PhDs or first post-doc research projects actually translate into patient/public benefit? We can get ourselves all worked up when writing applications to use patient data, trying to demonstrate and perhaps exaggerate the public/patient benefit of our research. Could making false promises undermine trust further?

Whilst we are entirely motivated by the hope that our early career research will translate into public/patient benefit, it is likely that it will not, at least not to begin with. But as ECRs working with administrative health records, we discover things that we did not set out to, we develop skills in analysing complex data sets, we generate new research questions, all of which could have patient/public benefit in the future. That being said, the responsibility lies with us to be both realistic and transparent about the aims of our research and the potential public/patient benefit that it could have. After we have carried out our research, we must be transparent and document what we have learned and how that learning will go on to contribute towards patient/public benefit at a later stage. We need today’s ECRs to be trained in analysing patient data, otherwise tomorrow’s patient/public benefit might not emerge.

Have you done any public/patient engagement with Scottish patients?  

“We haven’t done work with Scottish patients yet, and we’re very aware this is a gap for us. It’s something we’d like to do in the near future”.

It is great to hear that UPD are hoping to do work with Scottish patients. I am not aware of any groups in Scotland who are carrying out similar work with public/patients across the board (do get in touch if you are!).  For now, can we assume the views from the Fair Partnerships participants would also hold for the Scottish population? As Research Data Scotland (RDS) looms on the horizon, it appears Scotland has much further to go in terms of gathering views from the public on how their data is used.

Should all researchers working with administrative health data do public/patient involvement?

“I’d suggest patient and public involvement is always valuable, to shape the work you’re doing too, not just because ‘it’s the right thing to do’. With the fair partnerships report, we got lots of incredibly interesting and useful insights on a challenging topic”.

In an ideal world, we would carry out public/patient involvement in our PhDs and post-docs. However, ECRs may have limited contacts, resources and time, meaning it might not be feasible to do so. In particular, if you are working with a large national dataset, would it be realistic to capture representative views of the country on how you plan to use their data?

Well maybe not, but there are other things we can do. For one, Grace pointed out that “use MY data have created a data citation to help researchers acknowledge the contribution patients make to research”. This citation is a means to show gratitude to patients for allowing researchers access to their data, as well as enhancing the visibility of that use.

Another thing that crossed my mind was getting someone you know, with no knowledge about the research you are doing, to read your research proposal. Can they see the public/patient benefit in what you are proposing to do?

The outbreak of COVID-19 has clearly pushed the use of patient data into the headlines and accelerated the use of patient data in research (see the OpenSAFELY project in England). I asked Grace if UPD feel this presents an opportunity to demonstrate how we can safely and successfully use patient data in research or a challenge to maintain public trust in the use of their data?   

“Interesting question. I think it does both! It’s brought a lot of visibility to how important patient data is both for making decisions about public health and for research, especially research for new treatments or therapeutics. Patient data has never been more present in the national discourse as it is now. However, it also presents risks to public trust, as decisions are being made quickly, and sometimes with not enough timely transparency from government to the public about what’s happening”.

Are there any other UPD resources that you would recommend to eCRUSADers working with Scottish administrative health data? 

“Definitely the data citation – it would be great if you’d be able to use that on your research papers and communications.”  

“Also, lots of partners say this is really helpful – it’s research we did into the best words to talk about data, to make what’s happening more accessible”

“Our resources are summarised in this quick guide

Thanks very much for taking the time to answer these questions Grace. There’s clearly some great work going on at UPD and there is definitely a lot that researchers who are working with patient data can learn from that work. It would be great to see more public and patient engagement work on using patient data in Scotland- if anyone reading is familiar with any then do get in touch!

Look out for our next People Make Data post where we will be hearing from useMYdata.

#datadaveslives #admindata



Course Round Up: The Whys and Hows of applying to the Public Benefit and Privacy Panel for Health and Social Care (PBPP)

Date of course: Wednesday 11 March 2020
Organised by: Wellcome Trust Clinical Research Facility
Post summary: In this post I provide a run through of the course: The Whys and Hows of applying to the Public Benefit and Privacy Panel for Health and Social Care (PBPP). As the title suggests, the course – delivered by PBPP Manager Dr Marian Aldhous – covered two main areas: Why would you need to apply to the PBPP and how would you go about doing this. My thanks go to Marian, who has kindly let me use her slides to write this post.

In a rush? Check skip to the Top Tips for filling in your application and some of my reflections on the course (where you will also find links to an example Tooth fairy PBPP and associated documents!).

Post Contents: 

  1. What is the PBPP?
  2. What is the legislation and principles covering aspects of information governance for the use of NHS Scotland data for purposes other than direct care?
  3. What is the remit of PBPP?
  4. When do you  need a PBPP application?
  5. How does the PBPP application process work?
  6. How long is your PBPP application going to take?
  7. How to fill in your PBPP application according to the 5 Safes
  8. Top Tips for filling in your PBPP application
  9.  Group discussion and reflection on the concerns raised
  10. Final thoughts
  11. Useful definitions

1. What is the PBPP?

PBPP is a combination of a patient privacy panel and an information governance panel. They were set up by the Scottish Government eHealth to provide a single, consistent, open and transparent scrutiny process for health data to be used for different purposes, including research.

They exist to ensure the right balance between safeguarding the privacy of people in Scotland and the duty of Scottish public bodies to make the best use of data. PBPP provide leadership in the complex privacy and information governance domains so that:

  • Scottish people gain the benefits from the use of data
  • Emerging information risks are managed
  • Public concerns around privacy are addressed
  • Protection of privacy in the public interest is promoted

They have a scrutiny role on behalf of patients with respect to the information you are going to find out about the patient, in work that is not related to their direct care and information not in the public domain. They seek to check if the use of the data is justified, reasonable and will it achieve its purpose. Further, they want to scrutinise how damaging it would be if the information was leaked.

They are there to ensure that applicants have considered the public benefits and privacy implications for participants and their data. Moreover, they are there to provide assurance of the ‘technical and organisational arrangements’ to ensure respect for the data minimisation principle (GDPR Article 89(1)).

What was really clear from Marian’s presentation on the role of PBPP was that they are not there to trip applicants up or to prevent work from going ahead.

Back to contents.

2. What is the legislation and principles covering aspects of information governance for the use of NHS Scotland data for purposes other than direct care?

The UK Data Protection Act 2018 applies when processing (that basically means using or storing) personal data for living individuals, this includes pseudononymous data.

For personal data
For the lawful processing of personal data we look to Article 6(1) of the GDPR which states that the processing of personal data is lawful only if and to the extent that at least one of the following apply:

a) The subject has consented
b) Performance of contract
c) Compliance with legal obligation (under specific legislation)
d) Protection of vital interests i.e. to save someone’s life
e) Performance of a task that is in the public interest
f) Legitimate interests of controller

Point (e) is the most common legal basis used for the processing of personal data given in PBPP. Note that there are very good reasons why the others are NOT used. Specifically, consent for taking part in research, under the Research Governance Framework, is different from consent obtained for processing data under GDPR. This is one of the reasons you are NOT encouraged to use consent as their legal basis under 6.1. or 9.2. Also, legitimate interests can only be used by non-public authority / sector bodies (commercial or charities).

So, 6.1(e) is the most common because it is the most appropriate for the tasks usually covered by PBPP applications.

For sensitive personal data
For the lawful processing of special category sensitive data, we look at Article 9 of the GDPR:

(1) Processing of personal data revealing:
racial or ethnic origin, political opinions , religious or philosophical beliefs , or trade union membership , and the processing of genetic data, biometric data, data concerning health (physical and mental) or data concerning natural person’s sex life or sexual orientation shall be prohibited.

(2) Paragraph 1 shall not apply if one of the following apply:
a) Subject has given explicit consent
b) Necessary for obligations and rights of controller /subject for employment or social security
c) Necessary for vital interests of subject
d) Legitimate activity of non for profit body for political, philosophical, religious or trade union aim
e) Data made public by the subject
f) Necessary for legal claims or judicial capacity of courts
g) Substantial public interest
h) Preventative or occupational health, assessment of working capacity of employee, medical diagnosis, provision of health and social care
i) Public interest in public health
j) Necessary for archiving in public interest, scientific or historical research purposes or statistical purposes in accordance with article 89(1). (Article 89(1): subject to appropriate safeguards for the rights and freedoms of the data subject.)

The most appropriate basis chosen depends on the purpose of the application. If your application is for the use of health data, it would usually be covered by one of 9.2(h), 9.2(i) or 9.2(j), as these are the bases linked to health. For applications looking at NHS/medical processes (e.g. audits, health care planning or service improvement) then 9.2(h) would be used. For public health or infection control, you would most likely use 9.2(i). For any research, 9.2(j) should be used. If you are ever in doubt about this, you can always talk to your eDRIS coordinator to get advice.

The Common Law Duty of Confidentiality also applies to personal data that are not already in the public domain, for example patients have shared personal medical information with their GP and they expect it to be kept confidential. The Caldicott Principles and Data Protection Principles outline the special circumstances under which this information can be shared.

Back to contents.

3. What is the remit of PBPP?

The PBPP replaces the Privacy Advisory Committee (which covered research), National Caldicott Scrutiny Panel (which covered both research and non-research), and CHI Advisory Group (which also covered research and non-research).

PBPP have the authority to scrutinise applications for the use of NHS Scotland controlled data and National Records of Scotland controlled NHS Central Registry data for research, healthcare service planning and improvement, audit and other well defined and bona fide purposes. This scrutiny covers the whole process from patient to data provision/analysis.

In 2017/19, around 53% of applications to PBPP were from academic researchers.

Back to contents.

4. When do you need a PBPP application?

An application to PBPP is mandatory for:

    • Any use of sensitive or identifiable NHS Scotland data other than for direct care
    • Use and linkage of NHS Scotland National Services Scotland ‘national’ datasets
    • Use of NHS Scotland data from multiple boards
    • Linkage with external (non NHS Scotland) data
    • Linkage to primary research data
    • Access to individuals’ clinical data without consent
    • For transfer of NHS data out with Scotland

An application is optional for:

    • Any other use of NHSS data considered sensitive, novel or complex, or with wider national implications
    • Use of data from primary care providers, and/or from beyond NHS, but with implications for the service

An application is not required for:

    • Use of PII from only one NHS Board (Caldicott Guardian approval), unless requires linkage using national datasets
    • Use of data from your own board for direct care
    • Clinical research where covered by other Information
    • Governance processes

Back to contents.

5. How does the PBPP application process work?

There is a single PBPP form for all applicants. Detailed guidance is also given to fill in the form (this is covered in the second part of this post). Entry to PBPP goes through the Electronic Data Research and Innovation Service (eDRIS). The eDRIS team provide advice to applicants on the data sets and variables that are available. They also advise on the capability of that data to meet the objectives of the applicants proposal. Further, they provide help to fill in the PBPP form itself. They also work closely with the PBPP team when helping applicants prepare their applications. The eDRIS team work on the provision of data from different sources and organise access to the Safe Haven and carry out disclosure checks. Finally they offer support for data analysis. Clearly, a very busy team that cover a wide range of areas! The diagram below outlines these roles:

Note as well that there are two PBPP’s- a health one (or health and social care PBPP) and a stats one. All Non-NHSS (External) data go to the stats PBPP (S-PBPP). This includes ScotXEd education data, NRS census data (which takes a minimum of 6 months for data after S-PBPP approval), social care data, HMRC and DWP data (though possible in theory, you are unlikely to be able to obtain this but that’s another story…). There tends to be longer time frames involved for getting approval for external data sets.

So, the whole process (or the eDRIS sandwich) looks like:

I found this diagram really helpful in providing a picture of how the scrutiny process works. All applications go to Tier 1. Around 5 applications are scrutinised every fortnight (in 2017/18, the panel saw 136 applications). They are assessed according to a proportionate governance traffic light system relating to the criteria set out in the PBPP application. Those assessed as Green are all OK at Tier 1 and are approved or approved with some conditions e.g. ethical approval to be obtained. Sometimes the will require clarification of minor points/changes to the form which would then be checked by the PBPP manager and approved. Those that are Amber (medium risk) may need further clarification from applicants. Those responses will need to be reviewed by the same people who reviewed the application at the panel meeting; this happens by email and the panel does not meet again.  Those that are classed as Red have issues that cannot be tolerated, they are referred to Tier 2, with or without clarification. Applications can also be referred for a re-submission due to too many major changes being needed. Amendments can also be made after approval but this should be the exception. Any amendment must be within the original scope of approval. They can be made for things like change of institution, addition of variables, changes to storage location/mechanisms etc. Amendment forms are available on the PBPP website and must be submitted via your eDRIS coordinator.

Back to contents.

6. How long is your PBPP application going to take?

This is the question we all really want to know the answer to, especially when we are planning projects with limited funding. The timing can be split up into three puzzle pieces:

Pre-PBPP submission

This stage of the process is mainly down to you (at least once you have been allocated an eDRIS coordinator). The time taken in this stage depends on the number of iterations needed in your application, so making sure you have been thorough and clear when first filling it in will help. It will also be influenced by the complexity and clarity of the project- you’ve got to be incredibly clear and concise when outlining your research plans. Top-Tip: use diagrams where you can!

PBPP submission to PBPP approval

This part of the process is mostly very well defined and evidence is available on these timings. The figure below shows data from the 2017/18 PBPP annual report. Clocked days is the number of working days the application is being processed by the PBPP. The time for applicants to respond to any queries regarding the application is not included in clocked days. The ‘total’ number of working days from submission until the final decision is made, includes any time spent back with the applicant.

The Tier 1 panel meet every fortnight and see 5 applications. The timing for PBPP scrutiny and review is dependent on the number of iterations the application needs to go through and the speed of panel members responding. The complexity and clarity of the proposal are also important factors which could affect the time to approval. Tier 1 is faster than Tier 2 (they meet less often and by definition your application will have already been through Tier 1 processes).

Post-PBPP approval

This appears to be the most uncertain part as it depends on so many factors. These include, the waiting list for an eDRIS analyst, if you are requesting data from different sources. The timing is also affected by the overall complexity of the project, the amount of data required and the requirement for data sharing agreements.

Back to contents.

7. How to fill in your application according to the 5 Safe Principles

So, we know that the PBPP are there to weigh up the public benefit versus the privacy risk of applications. They carry out this assessment by considering the Five Safe Principles which coincidentally correspond to sections in the application:

When you are filling in your application you must demonstrate how you meet the 5 Safe Principles. In what follows, I outline the main questions that PBPP ask you to answer in your application. Some of them overlap somewhat and they should not be treated as a complete check list (every project is different!), but they will help to ensure you demonstrate the 5 Safes.

Safe People

The PBPP will be looking for:

  • Who has access to the data?
  • Who needs to know? Caldicott Principle 1!
  • How responsible are the applicants/analysts?
    • What is their knowledge and experience?
    • What training do they have?
      • IG training is required for an application (applicants, PHD supervisors, clinical leads, data custodians and anyone who is accessing patient level data (including pseudonymised data) needs to have up to data IG training)
      • Links to possible courses are on the PBPP website
      • Training must be renewed every 3 years
    • Who is responsible to ensure the applicants do what they say? Accountability principle!

Safe Organisations

The PBPP will be looking for:

  • Which organisation is responsible for the data?
    • Which organisation is the data controller? Affects main contact, which DPO should be consulted, purpose of the proposal
    • Responsible for the data
    • Researchers with NHS / University contracts
    • Who will keep the researchers accountable?
    • Does this change at different points in your proposal?
  • How safe is each organisation?
    • Is it a known public organisation / charity /company?
    • Who will become Data controller?
    • Is there a Data processor involved?
    • Data processing agreement in place?

Safe Projects

The PBPP will be looking for:

  • Is this an appropriate use of the data?
  • Project information
    • Background / Aims & objectives / Methods / Outcomes
      • Be very clear in your description and objectives.
      • Write so that a non-expert can understand.
      • Write about the whole process- from patient to data analysis.
    • Is the use of data necessary? Can it be done another way?
      • Be clear about variables requested
      • Bear in mind the principles of data minimisation
      • Justify the need for every single variable
    • Is the project ethical?
    • Where will the data go? Who will access it? Top Tip: Use flow diagrams! This can really help you to see what agreements will be needed, between which organisations.
    • What is the population for which data requested?
    • Would they expect their data to be used for this purpose?
    • How will the processing take place?
    • Is the processing lawful, fair and transparent?
      • You MUST state the legal basis for processing data. GDPR Article 6(1) for personal data (including pseudonymised data) and GDPR Article 9(2) for special category data.
    • How will the rights of the subjects be upheld?
  • What is the public benefit?
  • Has the applicant carried out any public engagement? (may not apply to all applications)
    • Have lay people been involved in the project design? If not, why not?
    • Do the public see the benefit in the project you wish to do?
    • Would they feel that the types of data requested are reasonable?
  • Has any peer review of the proposal been carried out?
  • Has there been a review from ethics?
    • NHS REC opinion
    • University ethics committee
  • Has the applicant assessed the privacy risks?
    • Have they carried out a Data Protection Impact Assessment? Note that this can be a legal requirement, depending on the nature of the processing. If not, why not? (It’s good practice to do this and a lot of it overlaps with the content required in the PBPP).
  • Other approvals
    • If you are a data processor, you will need a Data Processing Agreement setting out the processing instructions.
    • Approvals from out with Scotland
    • Approvals from another Data Controller for linkage to non-health data.

Safe Data

The PBPP will be looking for:

  • How identifiable are the data?
    • Are identifiers used for processing only? Make this clear!
    • Do combinations of variables make individuals identifiable e.g. rare diseases in small populations?
    • Are the data anonymised or pseudonymised?
  • Are the data highly sensitive?
  • Are you adhering to the principles of data minimisation?
    • Are the data relevant?
      • Too much data? Are all variables necessary? Can you use partial or derived variables?
      • Too little data? Will they fulfil the aims?
    • Justification for requesting these data variables
    • Are all the details necessary e.g. full dates, full postcodes?
  • What will happen to the data at end of project?
  • What are the sources of data requested?
    • For new data
      • How is it being collected?
      • Who is the data controller?
    • For existing datasets
      • Who are the data controllers?
      • If not NHSS do you have permission?
    • Who is carrying out the cohort identification and/or data linkage and how? Should be by third party.
  • How do individuals know about the use of their data?
  • What would individuals expect you to do with their data?
    • Participant information leaflets
    • Privacy notices on NHS Board websites
    • Generic NHS leaflets/website links

Safe Settings

  • From where will the data be accessed?
    • Will it be accessed in a Safe Haven? This is what NHS Scotland prefers!
    • If not in Safe Haven, why not? Consider:
      • How secure is the data collection process?
      • How secure is the transfer of data?
    • Will the data be accessed securely (data protection principle 6)?
      • Will it be accessed remotely?
      • Can anyone see over your shoulder?
      • Will the data be pseudonymised?
      • How will access be monitored?
    • Will the data be transferred securely?
    • Will the data be stored securely?
      • For how long?
      • Will it be destroyed? If so how?

Safe Outputs

  • What will be the outputs of the analysis?
    • Disclosure control. Beware small numbers! Groups < 5-10
  • Who will do disclosure control?
  • How aggregated is the data?
  • How identifiable is the data within the outputs?
  • Is there any confidentiality risk from publication?
  • What will happen to the data at the end of the analysis and at the end of the project?

Back to contents.

8. Top Tips for filling in your PBPP


  • Read the latest version of the guidance notes on the PBPP website
  • Use lay language and be concise
  • Use diagrams and flow charts
  • Take advice from your eDRIS coordinator. They know a lot about the data and its capability in meeting your project objectives!
  • Take care while filling in the form- carelessness raises questions of care taken elsewhere
  • Read and answer the questions asked
  • Be consistent across different questions
  • Explain ALL abbreviations and technical terms
  • ‘Tartanise ’ your application
  • Be aware that different legislation applies in Scotland and England
  • Set realistic end dates
  • Clearly label your supporting documents to match what you put into the PBPP form
  • Look at this very handy Tooth fairy PBPP application and corresponding data dictionary of variables, along with an example DPIA and privacy notice.  They have been put together by PBPP Manager Dr Marian Aldhous so you can see what a successful application looks like. Note that this is just ONE example and every application is different!


  • Don’t just copy and paste from other documents. They may not ask the same questions and they may have mistakes
  • Don’t copy from the guidance and include the note that says you shouldn’t use this…
  • Don’t assume the panel knows about your proposal, your area of research or your local processes. All needs to be explained clearly
  • Don’t forget that behind each data variable there is a patient, who might be interested in your results.

Back to contents.

9. Group discussions and reflection on the concerns raised

The general feeling in the room was that the course was very helpful. However, there were concerns raised by some participants. One concern was around ethics and knowing what ethics is required. It seemed some were confused as to what ethical approval they required and they felt they were filling in a lot of forms. I disagreed with this, as an academic who has worked with administrative health data, the ethics side of things was actually the more straightforward part. But I’d be keen on hear others views on this. It’s no surprise that another concern was on timing, but clearly timing depends on so many factors which are highly individualised to specific projects.

On timings, we have those three pieces of the puzzle: writing your application to submission; submission to approval; approval to data access. The middle piece is very clear, at least for the majority of projects, and timings are published in the PBPP annual reports. The other two depend on many external factors. What can we do to influence them?

Puzzle Piece 1: Writing your application.

I’d strongly suggest taking this course or reading this blog post (hey if you’ve read this far, you’re already part way there!). If you’ve done the background work thoroughly and you write a good application, it won’t need to go through as many iterations with your eDRIS coordinator and you will save yourself some time and make the lives of eDRIS easier.

PBPP Panel Manager Dr Marian Aldhous has put together a very handy Tooth fairy PBPP application and corresponding data dictionary of variables, along with an example DPIA and privacy notice, so you can see what a successful application looks like. Note that this is just ONE example and every application is different!

Puzzle Piece 2: From application submission to approval. 

We’ve got this one covered. See the Section 6: How long is your PBPP application going to take? 

Puzzle Piece 3: From approval to data access.

This is the tricky piece and the timing at this stage will vary hugely from project to project. At least, that’s what I assume. But the truth is, we don’t really know. So what can we do? This is one of the reasons I set up eCRUSADers, to try and build up an understanding of the time it will take to get access to data. But realistically I doubt every PBPP applicant is about to come forward and share their experiences with us. One suggestion might be to publish data at the point of data access which outlines clearly the data sets/variables requested and the time timelines for the three parts of the puzzle. This could take the form of simply the PBPP application or just a table filled in with those timings. Alternatively, end of project reports could be made available which detail this information.

Once we know the timing from approval to data access, as well as the factors which might influence them e.g. what data sets are requested, how many years, etc, we would be better equipped to plan for research projects which have limited timelines.

Back to contents.

10. Final thoughts

Overall, The Whys and Hows of Applying to the Public Benefit Privacy Panel for Health and Social Care is a very useful course and I’d recommend you get a space on it if you are thinking about using Scotland’s administrative health data. It will take you half a day but it could save you much more time in the long run. I’d maybe even go further and say that it should be compulsory…. The PBPP is not there to trip you up, it’s there to ensure the balance of public benefit and privacy risk. They are on our side and just as keen to make the processes easier and quicker as we are. Timing remains our biggest challenge and there are bits and pieces we can do to speed things up. Having said that, the biggest timing challenge we face is from PBPP approval to data access. Unfortunately, there is little we can do to influence this and that has to change.

Back to contents.

11. Useful definitions

Anonymous data

Anonymous data are not able to identify any individual in the data. Removal of identifiers does not necessarily make the data anonymous. In anonymous data, no combination of variables would allow an individual to be directly or indirectly identified. Anonymous data is irreversible. It is not subject to the Data Protection Act 2018.

Data Controller

Controllers are the main decision-makers – they exercise overall control over the purposes and means of the processing of personal data. If two or more controllers jointly determine the purposes and means of the processing of the same personal data, they are joint controllers. However, they are not joint controllers if they are processing the same data for different purposes. Controllers shoulder the highest level of compliance responsibility – you must comply with, and demonstrate compliance with, all the data protection principles as well as the other GDPR requirements. You are also responsible for the compliance of your processor(s). (from the Information Commissioner’s Office website)

Data Processor

Processors act on behalf of, and only on the instructions of, the relevant controller. Processors do not have the same obligations as controllers under the GDPR and do not have to pay a data protection fee. However, if you are a processor, you do have a number of direct obligations of your own under the GDPR. (from the Information Commissioner’s Office website)

Data Protection

Data protection is concerned with the safe use of personal data. The UK Data Protection Act 2018, which incorporates the EU General Data Protection Regulations (GDPR) outlines the data protection principles that organisations, businesses and the government must follow when using personal data.

Personal data

Any information which either alone, or combined with any other data leads to the identification of individual(s). This could be a name or phone number, IP address or cookie identifier.

Pseudononymous data

Pseudonomymous data are data that have been altered so that no direct identification of any individual can occur. However, additional information is held by you or someone else that allows the identification of an individual. This is personal data and is subject to the Data Protection Act 2018.

Special category personal data

Personal data which are subject to more scrutiny when determining the lawful processing. They include things like race, ethnicity, medical conditions (physical and mental), sexual life, religion, philosophical beliefs, politics and trade union memberships, criminal convictions/alleged offences, genetic and biometric data. (from the Information Commissioner’s Office website)

Back to contents.