This is a draft discussion paper, the first of a series exploring “open team science” approaches to managing health data, and specifically how to create a collaborative computational data science ecosystem where the sharing and re-use of objects such as codelists and code is facilitated, encouraged, recognised, and rewarded. As a microcosm of this we have first explored “codelists”. There are currently no ‘answers’ or preferred solutions given. We will be holding an open discussion with the research community on 2nd March at 3pm - you can book to join us here.
Job Title: Platform Lead (Python).
Salary: £48,114 to £55,750 per annum, plus market supplement up to £14,095.
Contract: Fixed-term for 18 months in the first instance.
Hours: Up to full-time, flexible and part-time working acceptable.
Closing Date: noon on Monday 11 January 2021.
Interview Date: 27/28 January 2021
Vacancy ID: 147140.
Apply: https://www.jobs.ox.ac.uk/ > search all jobs > search by "DataLab" or vacancy ID
Job Title: Epidemiologist / Health Data Scientist for OpenSAFELY in the DataLab.
Salary Range: £41,526 - £49,553, with discretionary range to £54,131.
Contract: fixed-term for 18months in the first instance.
Hours: Up to full-time, flexible and part-time working acceptable.
Closing Date: Friday 8th January 2021.
Interview Date: 21 January 2021.
Vacancy ID: 148953
To apply: https://www.jobs.ox.ac.uk/ > search all jobs > search by "DataLab" or vacancy ID
Job Title: Software Developers (2 posts: Python and Frontend/UI).
Salary: £41,526 - £54,131 pa, with the possibility of a market supplement up to £2869.
Contract: fixed term 18 months.
Hours: Up to full-time, flexible and part-time working acceptable.
Closing date: noon on Monday 11 January 2021.
Interview date: 27/28th January 2021.
Vacancy ID: 148913.
Apply: https://www.jobs.ox.ac.uk/ > search all jobs > search by "DataLab" or vacancy ID
We have been very busy since our last newsletter back in July and there are tonnes of exciting updates for you here!
Measure Update: Total Oral Morphine Equivalence
The Faculty of Pain Medicine has recently updated their recommendation on oral morphine equivalence (OME) which we use on our OpenPrescribing measure of OME. We have taken this opportunity to update and a new novel implementation of how we assess OME. Until this work is completed we have taken the decision to “suspend” the measure from dashboards however you can still view the old method using this link.
Victory! We have the hospital medicines data. Now: biologic medicines for severe Asthma
In July, Ben and Brian wrote a piece in the British Medical Journal arguing that hospital medicines data should be openly shared. Magnificently, the NHS has now made secondary care medicines data (SCMD) available. You can read the full technical specification of the data here but briefly: it is hospital pharmacy stock control data, which is collected and processed by Rx-Info, and is now published on the NHS Business Services Authority website in the NHS dm+d standard we know, love, and have documented well.
What is OpenSAFELY
Working on behalf of NHS England we have now built a full, open source, highly secure analytics platform running across the full pseudonymised primary care records of 24 million people, rising soon to 55 million, 95% of the population of England. We have pursued a new model: for privacy, security, low cost, and near-real-time data access, we have built the analytics platform inside the EHR data centre of the major EHR providers, where the data already resides; in addition we have built software that uses tiered increasingly non-disclosive tables to prevent researchers ever needing direct access to the disclosive underlying data to run analyses; code is developed against simulated data using open platforms before moving to the live data environment. Everything has run smoothly. We are fully live inside TPP; we are signed off with full data access and end-stage tech development for the computational platform with EMIS.
OpenPrescribing and DataLab Papers
It has been a busy month for paper publication at The DataLab. We have written a brief description of the most recent papers below. Please sharewith colleagues and [get in touch(mailto:[email protected])if you have any relevant observations! Remember you can read all our academic papers related to OpenPrescribing on our research page.
Just prior to the COVID-19 emergency we launched a new measure on OpenPrescribing, primary care prescribing of medicines defined by the NHS dictionary of medicines (dm+d) and devices as “hospital only”. In this blog we set out what exactly this means, describe some of our early investigations and interesting (but nerdy) details, and ask for your help in improving and maintaining this dm+d field.
A guest blog from Dr. Kevin Barrett (Twitter @DrKBarrett).
Last week the British Journal of General Practice published our paper on unsafe prescribing of methotrexate. As part of the publication Dr. Kevin Barrett talked to BJGP (see video below) about how he used OpenPrescribing to identify potentially unsafe prescribing in his practice and has also written a short blog below.
At OpenPrescribing we know that clinicians can be overwhelmed with guidance and data about many different aspects of care. We therefore have developed an innovative email alert service for every single practice, primary care network and clinical commissioning group in England that delivers bespoke custom emails to your inbox about your own organisations prescribing.
Methotrexate Prescribing Safety – New paper in BJGP
This week the British Journal of General Practice published our latest paper on unsafe prescribing of methotrexate. We found that the prevalence of unsafe methotrexate prescribing (10mg tablets) has reduced but remains common, with substantial variation between practices and CCGs. In the paper we also discuss recommendations for better strategies around implementation.
OpenSAFELY is a new secure analytics platform for electronic health records in the NHS, created to deliver urgent results during the global COVID-19 emergency. OpenSAFELY is a collaboration between the DataLab, the EHR group at London School of Hygiene and Tropical Medicine and TPP who produce SystmOne. OpenSAFELY is now successfully delivering analyses across more than 24 million patients’ full pseudonymised primary care NHS records. The first analysis from OpenSAFELY is Factors associated with COVID-19-related hospital death in the linked electronic health records of 17 million adult NHS patients with more answers to important questions expected shortly.
OpenPrescribing.net has been updated this week with the latest release of prescribing data covering March 2020. In-depth analysis will be needed over the coming months, but this release gives us the first glimpse into the impact that COVID-19 has had on prescribing. At the DataLab we have been quite busy with the new secure analytics platform OpenSAFELY but the following blog is a rapid analysis of the March prescribing data which others may find helpful to focus their own investigations. As always, all our analytical code is openly available on our GitHub for inspection and reuse by anyone.
The following is a rapid analysis of the “top 10” medicines in NHS England primary care in 2019. We prepared this analysis for a user who wanted to use the list in a teaching session with students to prepare them for the medicines they will most commonly see in general practice. We are sure others will find it useful – please get in touch and tell us how you use it via twitter @openprescribing or [email protected]. As always our analysis with complete analytical code is openly available on our GitHub page. You can also investigate the prescribing of any medicines you like using our tools like our Analyse page, chemical trends and our brand new browser for the NHS Dictionary of Medicines and Devices. Read on below where we describe the “top 10” medicines and class of medicines, in terms of volume and cost.
At The DataLab we like to work in the open and share our insights for the whole community, so we can fix a problem for us, then share the solution, and help fix it for everyone. We think this is efficient for us and the whole system. In this blog our magnificent coder Peter Inglesby sets out some analysis he has done of changes to the NHS prescribing data we use. It took us a few hours to investigate these problems for our own purposes, then document our findings and solutions internally; it took an extra 20 minutes to share in this blog post and now we give it to you so you don’t have to replicate our effort and can maybe find some insights we have missed!
Update September 2020: NHS England have announced a reduction in the number of planned measures including the majority of the measures on OpenPrescribing. We will remove the IIF dashboard in a future update.
Update: Due to COVID19 response NHS England has announced that the IIF will be postponed. We will continue to make this dashboard available as NHS England also states that they will continue to monitor the data to understand any impact.
At The DataLab we get many people contacting us every month asking us when OpenPrescribing will be available in their country. In this blog we are outlining OpenPrescribing.yourcountry where we give you the information that you can use locally to build a case for OpenPrescribing in your country and obtain funding to support development. We aren’t quite ready to build OpenPrescribing.yourcountry yet, but we will be soon and we wanted to share our plans so you can be ready when we are.
Most people share their end of year roundup during late December when everyone is too full of cake to read. Now you’re back in the saddle, here’s our roundup of everything the DataLab threw out into the world over the previous 12 months!
OpenPrescribing.net went from strength to strength, with over 135,000 unique users last year. We now have over 80 measures of prescribing safety, efficacy and cost-effectiveness and have been working on new types of measures and alerts to identify “outlier” prescribing, such as with zuclopenthixol. In 2019 we also: launched new dashboards and bespoke alerts for every single primary care network (PCN), sustainability and transformation partnership (STP), and NHS region; upgraded the Analyse page to support more organisations with bespoke medicines queries; and developed tools to help solve the problem of Ghost Branded Generics which cost the NHS an extra £11.6million per annum but has massively reduced during 2019.
Today on OpenPrescribing.net we have launched our National Institute for Health and Care Excellence – NICE Prescribing Dashboard. We have a NICE prescribing dashboard for every single general practice, primary care network (PCN), clinical commissioning group (CCG)https://openprescribing.net/ccg/, sustainability and transformation partnership (STP), NHS region and for the whole of England.This allows anyone to explore how NICE guidance has been implemented in their organisation, supporting effective, safer and more efficient prescribing. To access yours, simply go to your organisation’s measures page and select “NICE” from the drop-down. You can read more about our categories here or watch our short Youtube video.
PCN Dashboards Now Live!
We have now launched our long-awaited Primary Care Networks (PCNs) dashboard, made possible thanks to the the membership list being published by NHS England last week.
We have PCN prescribing dashboards for every single NHS PCN and their member general practices. (Don’t know your PCN’s name? You can find it on your practice dashboard). This allows anyone to explore NHS prescribing patterns in their PCN and how this compares to others across England – supporting safer, more efficient prescribing.
Our EU TrialsTracker has been assessing compliance with EU trial reporting guidelines for over a year now. Our data has been used by Parliamentary Committees and trial sponsors to improve the reporting of clinical trials registered on the EU Clinical Trials Register (EUCTR).
A guest blog from Calum Polwart (Twitter @ShinyBlackShoe)
At the DataLab we value openness and transparency as we believe open discussion of ideas and methods are the key ingredients for high quality data analysis. We think it is unhelpful that so much NHS data analysis is outsourced, or done behind closed doors, as this prevents coalface clinicians from engaging with data and sharing their expertise and insights. We build
Today on OpenPrescribing.net we have launched our Primary Care Networks (PCNs) dashboard. We have PCN prescribing dashboards available for every single NHS PCN and their member general practices. This allows anyone to explore NHS prescribing patterns in their PCN and see how this compares to other PCNs across England – supporting safer, more efficient prescribing.
Last week, the Commons Science and Technology Select Committee convened an inquiry following-up their previous clinical trials transparency efforts. The Select Committee has been very active in the trials transparency space over the past two years. Earlier this year they sent letters to every public university and NHS trust in the UK that sponsors clinical trials on the EU register. These letters reminded sponsors of their trial reporting responsibilities and provided them with reporting performance figures based on data from our EU TrialsTracker.
New Paper in BMJ
Our newest paper is now out in the BMJ! Here we show huge variation in adoption of warranted changes in prescribing behaviour, using some exciting new openly available change detection methods.
We now have over 80 measures!
This month we have launched a range of new measures. As always, measures are prioritised on your dashboard by potential for improvement so you can quickly and easily spot where your organisation is an outlier. You can also sort by potential savings or group measures by clinical condition.
This is the third instalment in our series of commentaries on using reference ranges to interpret pathology test results.
Reference ranges vary between labs
Classically, the reference range is defined statistically: it is the interval within which 95% of the values of a healthy reference population fall into. Therefore 2.5% of the time, healthy people will have (for example) haemoglobin concentrations less than the lower limit, and 2.5% of the time it will be over the upper limit. (Read more in our previous blog).
This is the second instalment in our series of commentaries on reference ranges used to interpret pathology test results. Here we describe two issues relating to how meaningful reference ranges are.
Reference ranges are usually indicators of statistical outliers in a healthy reference population.
The most common type of reference range is defined as the interval between which 95% of the values of a healthy reference population fall into. In other words, 2.5% of the time, healthy people will have haemoglobin concentrations less than the lower limit.
As the OpenPathology project has progressed, we have started to build measures to describe variation between practices, and groups of practices.
While comparing rates of requests per head of population can be used as a simple measure of possible over- or under-use of tests compared to other practices, it doesn’t take into account the general health needs of the population, so it can be difficult to rule out warranted variation. Therefore, comparing variation in rates of abnormal results is another useful measure to consider.
In our initial analyses of pathology data from the South West for our OpenPathology.net project, there is a pronounced (sometimes extreme) increase in high potassium results during the winter months, and a corresponding increase in low-potassium results in summer:
What’s causing it?
The level of potassium in plasma within a blood sample is affected by temperature. Potassium can move into and out of blood cells during storage: in cooler temperatures, potassium diffuses out of cells into plasma, leading to the reading being artefactually higher, while in higher temperatures an enzyme works to pump potassium into the cells.
In our initial analyses of pathology data from the South West for our OpenPathology.net project, we have noticed subtle but consistent variation in haemoglobin test results throughout the year. Haemoglobin (Hb) levels falling below certain threshold values typically give a diagnosis of anaemia.
In the following regional sample we see that the mean Hb concentration across both males and females differs by 2-3 g/l between the summer low and the winter peak:
At the DataLab we regularly collaborate on projects, both small and large, with users who get in touch. For development of this measure we would like to thank the NHS England Sustainable Unit and Centre for Sustainable Healthcare for their input on our work to support the NHS Long Term Plan. Another one of our collaborators on this work is Nicola Read, a respiratory doctor who is currently one of the National Medical Director’s Clinical Fellows. Below we set our new measure on inhalers and the environment and Nicola explains its importance for all inhaler prescribers.
Zuclopenthixol is an antipsychotic used for schizophrenia and other psychoses. In the UK, there are two injectable forms of zuclopenthixol:
This week we launched a new measure to support a new type of alert to identify any prescriptions of zuclopenthixol acetate for further investigation. It is not recommended to be prescribed in primary care, so prescriptions may have been prescribed in error.
This week we launched a new measure of seven day prescription for medicines used to treat long-term conditions. There is no current consensus on duration of prescription across the NHS and prescribers are advised that they should write a prescription for a duration that is clinically appropriate. For medicines that are for stable long-term conditions many areas have policies in place recommending one, two, or three month prescriptions.
New Feature! Measures linked to Analyse page
Following many requests from users, we have created links from our measures to the corresponding search on the Analyse page. This is particularly useful if you want to see multiple practices or CCGs on one chart, view the results on a map, or see exactly which products are included in the measure.
You will notice this is not yet available for all of our measures (which now number close to 100), due to the complex way some measures are constructed. This currently affects just 12 of our standard measures and 4 of the Low-Priority prescribing measures, and we hope to keep increasing the options in the coming months.
At OpenPathology, we’ve already found interesting variation in test request rates between practices, but we’d also like to compare whole laboratories.
The number of tests per patient is an important measure for understanding variation in test requesting across the country. For example, the Getting It Right First Time (GIRFT) initiative uses this measurement to shine a light on clinically important variation and promote improvements in cost-effective care.
OpenPathology is our project exploring and feeding back to clinicians on their test requesting rates.
Having established that patient counts are subject to some inaccuracy in existing analyses (see our previous blog), it’s important to sense check the accuracy of our own list size data.
Because two members of our OpenPathology team are also clinicians in North Devon, we have the opportunity to compare our data with known changes in practice.
We are excited to reveal some of the data for our new OpenPathology.net project. Similar to our previous project for NHS prescribing data openprescribing.net/, we are developing free, open dashboards for analysing NHS pathology data. So far we have data from two laboratories (North Devon and Cornwall), and have started to analyse it.
What have we found so far?
New Feature! DM+D browser
This week we have launched a new browser for the NHS Dictionary of Medicines and Devices, better known as dm+d. dm+d is the standard dictionary for the medicines and devices used across the NHS. At last count there were over 150,000 packs of medicines and devices described. You can read more about the dm+d in this detailed blog.
This week we have launched a new browser for the NHS Dictionary of Medicines and Devices, better known as dm+d. dm+d is the standard dictionary for the medicines and devices used across the NHS. It contains codes and descriptions for all these medicines and devices; at last count there were over 150,000 packs of medicines and devices described. You can read more about the dm+d in this detailed blog.
Over the past year we have been increasingly using NHS Dictionary of Medicines and Devices (dm+d). This blog post sets out to describe dm+d for the benefit of the wider prescribing analytics community and others.
What is the NHS Dictionary of Medicines and Devices (dm+d)?
dm+d is the standard dictionary for the medicines and devices used across the NHS. It contains standardised codes, descriptions, and metadata (such as price and pack size) for every entry. At last count it contained over 150,000 packs of medicines and devices.
Earlier this year we noticed a disturbing trend among UK trials registered on the EUCTR. The amount of newly approved and registered trials on the EUCTR dropped drastically following the 2016 Brexit vote. The chart from that blog post (from May 2019) is included below.
When we reached out to the MHRA to ask about this, they stated that there was actually no decline in UK trials post-Brexit but rather administrative delays that kept trials from appearing on the public-facing EUCTR website. They noted this issue was being addressed and updates would be completed by the end of Q2 2019.
New low-priority measures approved
Yesterday (27 June), NHS England completed its consultation on an additional proposed set of products being considered for a recommendation against regular use in primary care. Therefore, on the site we have now included these new items in the set of low-priority measures. The newly added products include bath and shower emollients, higher cost insulin pen needles and dronedarone. See how your practice or CCG is performing on these measures here, or navigate to the Low Priority measures from your favourite organisation’s dashboard.
Our technical team are busy improving how the engine room of OpenPrescribing. When they’ve finished we’ll get them to write a blog on exactly what they’ve done. In the meantime, as the work progresses we are able to add some additional exciting new features to the site.
One of the limitations of how our Analyse page worked was the ability to only search at one BNF level at a time. For example, you couldn’t search for products and presentations together. However, now you are able to add any combinations you want, making this tool much more powerful. For example, it’s helpful when looking at broad-spectrum antibiotics: previously you could only include either cephalosporins and quinolones (BNF paragraphs), OR co-amoxiclav (a BNF chemical). Now you can include all of them at the same time.
Update November 2019: Our NHS PCN dashboards are now live at https://openprescribing.net/pcn/ and you can read more on our launch blog.
Update August 2019: Our amazing developers have written all the code necessary to display all prescribing measures and data for all PCNs in England on OpenPrescribing. Unfortunately there is no national list of PCNs and their membership available, as soon as this is published we will bring you our prescribing dashboards.
Varied implementation of UTI prescribing guidelines
One of our recent papers, published in the Journal of Antimicrobial Chemotherapy, highlighted variability in the speed at which different CCGs switched from prescribing trimethoprim to nitrofurantoin (as recommended by PHE for uncomplicated UTI).
It appears that the practices which changed the most were in CCGs that had taken some action to promote the new guidelines, such as a change in formulary. What are the implications? Read more on this in our blog and you can of course see any region’s performance on this measure on OpenPrescribing.
Just before Christmas we had a paper published in the Journal of Antimicrobial Chemotherapy. It looked at how GP practices responded to changes to the guidance for antibiotics for urinary tract infections (UTIs).
It’s an interesting story in itself, but we think that it prompts some wider questions about how GPs are helped to keep up-to-date on guidance on prescribing.
We recently noticed a very dramatic drop in the number of UK clinical trials post-Brexit on the EU Clinical Trials Register (which would be a catastrophe for British science) and wrote to MHRA to get their view. It turns out that the drop is largely due to bad data management: this is worrying, but not the same thing as a drop in the number of UK clinical trials.
The Short Story
We’ve been conducting research on trends in clinical trials globally with one very striking recent finding: examining clinical trials on medicinal products, using the EU Clinical Trials Register (EUCTR), the number of trials with a competent authority decision from the UK has fallen dramatically. As you can see on the graph below: from a long-term trend of around 150 new trials per quarter, after 2016 there is a rapid drop to fewer than 50, and now fewer than 10.
This week we have launched a new email alerting service that covers all of NHS England. Many users of OpenPrescribing already receive our monthly newsletter and our innovative email alert service for practice and CCG prescribing measures and for price concessions. We have now developed this service covering all of England based on user feedback. To sign up, just go to the All England page and enter your email address in the box beside the measures categories (see screenshot below).
At the DataLab we value openness and transparency as we believe open discussion of ideas and methods are the key ingredients for high quality data analysis. We think it is unhelpful that so much NHS data analysis is outsourced, or done behind closed doors. This blog sets out the steps we take with OpenPrescribing.net to ensure all our analysis and methodology is freely available for inspection, review, and importantly re-use, by anyone. We hope other teams will adopt these approaches so we can all collaborate to optimise analysis, generate insights and improve care for patients in the NHS.
On OpenPrescribing.net we provide data for individual practices and CCGs (and now STPs and regions!) making it easier for everyone to explore NHS prescribing patterns in England – supporting safer, more efficient prescribing. However, providing data for an individual location in isolation is rarely useful. We need to provide context, so that some sort of judgement can be made about whether the prescribing in question is especially high or low, and how extreme it is, in comparison with others. On OpenPrescribing we do this using deciles. We think providing transparency in our methods is really important, so in this blog I set out our rationale for doing so.
In the last year we estimate that price concessions have cost an additional £165 million in unplanned expenditure for Clinical Commissioning Groups (CCGs), and our OpenPrescribing.net price concession calculator was featured in a major BBC news story and in the Pharmaceutical Journal this week. However, interestingly, NHS price concessions do not just affect the NHS: they also represent unplanned expenditure for charities, local councils, and others. Here, we report our estimate of the impact on non-CCG organisations as an additional £5.6 million in 2018: a huge four-fold cost increase on top of expected prices for a sector that is already over-stretched.
Today we launched NHS regional and STP dashboards on
What is an NHS STP or Region?
It’s been a busy start to the year for the FDAAA TrialsTracker! As the FDAAA TrialsTracker celebrates its 1 year anniversary, we now show over 1000 trials currently overdue to report under the FDA Amendments Act of 2007 (some background on our tracker and the FDAAA 2007 here). Additionally, we estimate that the FDA could have collected over $2 billion in fines if they were enforcing these requirements. To date, we have no evidence they have issued even a single dollar in fines. But along with the bad comes the good. Over the past year we’ve also heard from many trial sponsors and other organisations and individuals who are using our TrialsTrackers to ensure trials are reported on time and in accordance with the law.
At OpenPrescribing we have a range of prescribing measures that makes it easier for everyone to explore NHS prescribing patterns in England – supporting safer, more efficient prescribing. We now have 70 measures including our two latest on Freestyle Libre and herbal medicines, that we recently blogged about. The measures are available for for every single practice and CCG in England and cover a range of clinical areas such as medication safety and antimicrobial stewardship to support better prescribing.
New Price Concessions alerts
We have introduced a new email alert service, built upon our recently-launched NHS Price Concession calculator, which shows the cost impact of concessions for every single practice, CCG and for all of England combined.
Ghost Branded Generics are a relatively new category of cost-saving opportunities, caused by prescribers specifying a manufacturer for a generic product, often resulting in a higher reimbursement price compared to the true generic. We estimate the problem costs the NHS £11.6m a year. We have written about this extensively since our first blog on discovering the issue and developed a Ghost Branded Generics dashboard and measure for every practice and CCG in England.
Today we launched a new feature on OpenPrescribing: an NHS Price Concession email alerts service. This is in addition to our existing calculator that shows cost impact of price concessions, which can already be viewed on every practice, CCG and All England dashboard. You can read more about price concessions (aka NCSO) in our previous blogs.
As you know, here at the DataLab we are working on the RetractoBot project to reduce the number of cited retracted papers.
Citations of retracted RCTs are particularly dangerous because such trials provide strong and unbiased evidence of treatment’s safety and efficacy (hierarchy of evidence). Moreover, results of RCTs are often pooled in systematic reviews and meta-analyses, which are used to synthesise the available evidence on a given subject or to justify clinical guidelines.
…Identify CCG Cost Savings Opportunities using OpenPrescribing.net
Every year in the NHS local teams around the country put together “QIPP Plans”. QIPP stands for Quality, Innovation, Productivity and Prevention and is a large scale programme introduced across the NHS to ensure the NHS delivers more for the same funding. We make no comment on the programme itself but we think OpenPrescribing is a useful tool in helping develop “QIPP Plans” and to identify new areas for savings related to medicines spend.
Nearly all trials of medicinal products conducted in Europe since 2004 are required to post their results directly onto the EU trials register within one year of completion. Since September, our EU TrialsTracker has monitored all clinical trials in the EU to check whether they are compliant. Recently we produced a specific report on data on trial reporting at UK Universities: the House of Commons Science and Technology Committee is currently using this data to alert Universities and monitor their current reporting performance.
Herbal medicines For techie reasons, we’re quite excited about the herbal medicines measure. We don’t like to write measures that require a manually managed list of preparations, as these require a lot of curation, and can quickly become inaccurate if a new drug is released. Therefore for most (if not all) of our measures we use the hierarchical BNF codes provided by the NHS Business Services Authority (you can read more on these here).
Our EU TrialsTracker has been live for 4 months providing data on who is and isn’t meeting EU trial reporting guidelines. The tracker reached a major milestone last week when our data was used by the House of Commons Science and Technology Committee to inform UK Universities of their current reporting performance and remind them of their ethical and legal obligations to report their sponsored trials.
Before Christmas we wrote about Ghost Branded Generics, a very nerdy story about a problem we uncovered that costs the NHS………£11.6million a year. Since then we have launched a freely accessible Ghost Branded Generics dashboard on Openprescribing.net for every practice and CCG in the country; and a Ghost Branded Generics measure so practices and CCGs can track their prescribing of Ghost Branded Generics over time.
While investigating the data behind Ghost Branded Generics, we came across something that we didn’t expect. As part of our work in creating the Drug Tariff viewer (once we’d managed to obtain the data), we’ve got an archive of Drug Tariff (DT) prices going back to 2010. We used our DT archive to compare listed reimbursement prices with what was actually being paid for generics, we sometimes found that the price paid wasn’t the one listed in the tariff. Instead, sometimes the price was based on the drug tariff price…from the future. or to be more precise, one month into the future.
Following-up on the October 2018 report on clinical trials transparency, the chair of the House of Commons Science and Technology Committee, Norman Lamb MP, has sent letters to 41 universities with trials registered on the EU Clinical Trials Register (EUCTR).
Our EU TrialsTracker has now been live for four months. As of 10 January 2019, we have identified 8,062 trials registered in Europe that are unambiguously due to report results under EU guidelines; a total of 4,323 (53.6%) trials have reported results to the registry. We have also seen some institutions – for example Kings College London – improve their trial reporting performance dramatically and rapidly.
Before Christmas we wrote a nerdy story about Ghost Branded Generics, a problem that costs the NHS £11.6m a year due to prescribers selecting specific manufacturer’s products rather than true generics. This is largely avoidable. Today we launch our Ghost Branded Generics dashboard for every practice and CCG in the country. This can be accessed through every dashboard page (example below) and we think it will be useful to help people change prescriptions from Ghost Branded Generics to true generic prescriptions.
This a very nerdy story about a problem that costs the NHS £11.6m a year. It shows how one small design choice in the software GPs use can have huge ramifications for how we prescribe, and a huge cost impact on the NHS. More than that, it shows how problems like these can only be spotted, and addressed, by mixed teams like ours – doctors, pharmacists, researchers and software engineers – pooling our different skills to build tools and papers.
Each year, we estimate there are up to £5m of Out of Pocket Expenses (OOPE) expenses charged to the NHS, added by dispensing contractors to their invoices. Could some of these expenses be reduced? In 2014/15 NHS Islington CCG wrote to dispensing contractors highlighting such expenses, and from this single intervention achieved a 50% reduction; spread across the country this could amount to a saving of £2.5m.
In our third full year of existence we produced even more exciting outputs and continued to grow. We welcomed Lydia Berry, back from maternity leave; Dave Evans, Consultant Programmer, who joined the OpenPrescribing technical team; and Brian MacKenna, an Honorary Research Fellow Pharmacist and member of the NHS England Medicines and Diagnostics Policy Unit. We also welcomed Darren Smyth, a UK and European Patent Attorney – our work so far includes our pregabalin papers (here and here), and he has also contributed to our EUCTR work.
Earlier this week, the Media, Freedom & Information Access Clinic at Yale Law School filed a lawsuit against the heads of the Department of Health and Human Services, the NIH, and the FDA over their interpretation and implementation of trial reporting provisions in the FDA Amendments Act of 2007 (FDAAA 2007). The lawsuit was filed on behalf of Charles Seife, a journalist and NYU professor, and Dr. Peter Lurie, President of the Center for Science in the Public Interest.
New “do not prescribe” measures on OpenPrescribing.net
At OpenPrescribing we pride ourselves on developing our tools in response to the needs of our users. Last week NHS England announced a new “Do Not Prescribe” list for consultation. Within an hour we made graphs showing every GP practice’s prescribing of these items. You can drill down to CCG level, and then practice level.
This week we launched a new feature on OpenPrescribing, an NHS Price Concession calculator. We show the cost impact of price concessions for the whole of England here and the calculator appears on every single practice and CCG dashboard so you can work out the impact locally.
Earlier this week NHS England announced a new “Do Not Prescribe” list for consultation.
Within an hour we made graphs showing every GP practice’s prescribing of these items. You can drill down to CCG level, and then practice level.
We hope that this data will be useful for clinicians and CCG pharmacists to identify where there is most room for improvement, or change. Or, to drive discussion about agreement on the guidance.
The data that drives OpenPrescribing is described briefly in our FAQ. It is supplied by NHSBSA and NHS Digital, and a few other sources.
Over the years we have come to understand the limitations of this data. We’re sharing them here, so researchers can take them into account when carrying out analyses.
When using Practice Level Prescribing Data, bear in mind:
All England Dashboard - A New Feature on OpenPrescribing.net
At OpenPrescribing we pride ourselves on developing our tools in response to the needs of our users. OpenPrescribing is being increasingly used at national organisations and we have had many requests for an All England dashboard. This month we launched the first version of the All England dashboard and blogged about it here.
Drug supply issues are an interesting use-case for OpenPrescribing. Here we will talk about a recent example.
What is the problem?
Last week the Department of Health and Social Care issued a “Supply Disruption Alert” for Epanutin (phenytoin) 30mg/5ml oral suspension: Pfizer, the manufacturer, will be out of stock of this product from the week commencing 29th October (today) until early December 2018. This means people currently taking Epanutin (phenytoin) 30mg/5ml oral suspension may need to be prescribed a different product.
This week we have launched a new page on OpenPrescribing.net, the All England dashboard, that allows anyone to see the quality of prescribing at a national level. For the first time we have aggregated all the savings from all our measures in one place. For the month of August these numbers are quite staggering:
The EU TrialsTracker, which provides the results reporting status of every trial on the EU Clinical Trials Registry, launched last week alongside a paper in the BMJ. We already shared some of the media coverage from the launch of the tracker and comments from Norman Lamb MP, Chair of the House of Commons Science and Technology Committee and Fergus Sweeney, Head of Inspections, Human Medicines Pharmacovigilance and Committees at EMA.
Earlier this year we launched our FDAAA TrialsTracker, providing a live look at whether individual sponsors and trialists are meeting their responsibility to report the results of clinical trials on ClinicalTrials.gov. Now we have launched the EU TrialsTracker. This new tracker shows the results status for every trial on the EU Clinical Trials Registry (EUCTR). We are launching the tracker alongside a paper in the BMJ providing a detailed overview of our methods, an analysis of the factors associated with non-reporting and a discussion of the data issues that make assessing compliance difficult on EUCTR.
Update: You can view a short Youtube video demonstrating this feature here.
You can select a category using the new dropdown menu above the measures…
With the launch of our FDAAA TrialsTracker, applicable trials that have failed to report their results on ClinicalTrials.gov are starting to appear. If you go here on our Tracker (the “All Trials” view, and toggle the “due” filter) you can see all the trials that have not yet reported.
Non-reporting of clinical trial results in an ongoing, global public health issue. We are going to start highlighting some of these unreported trials in blog posts to shine a light on what information is being withheld from the public as a result of non-reporting.
When you produce online tools from data, you often get useful feedback that helps you improve the outputs. (Send us feedback any time!). Additionally, when you use data, you learn about interesting glitches in it, some of which can be entirely undocumented. Here we share one example of helpful feedback, and how we used it to improve our tool.
First some background. Trial reporting is a huge problem in medicine: the results of clinical trials are routinely withheld from doctors, researchers, and patients. We think all trials should be reported. The WHO agrees. A US law called the FDA Amendments Act requires some trials to report their results on ClinicalTrials.gov: this law has many loopholes, but it’s an important start. Since the results reporting requirements of FDAAA came into full force, our FDAAA TrialsTracker has been identifying the individual trials that have breached it. You can read our paper on how the tool works: we also blogged about our methods for identifying overdue trials. Staff in universities who manage trial reporting are already telling us that they find our tool useful.
Now that we’ve launched our FDAAA TrialsTracker, we plan on occasionally taking a closer look at some of the trials that go unreported. Our first blog was about a trial examining 2 drug combinations for managing pain during labor (NCT01846221).
So why do we think this specific trial is due to report? While we go through how we established our criteria and set up our database in detail in our preprint paper on Biorxiv, we wanted to walk you through exactly what fields matter on ClinicalTrials.gov and how we used them to build our tracker. We think we were able to do this well, but are open to feedback and will amend our paper and methods as necessary.
At OpenPrescribing, we provide tools for analysing prescribing behaviour in primary care in the NHS in England. If you work with prescribing data, you may have noticed that practices which are “dormant” apparently continue to prescribe. This short article explains why, for the curious.
What is a Dormant practice?
Our prescribing data comes from the NHS Business Services Authority (NHSBSA), who are responsible for processing dispensing information supplied by pharmacies. Each line of the data includes a practice code which uniquely identifies the GP Practice that issued the prescription. To understand more about each practice (including its contact details, location, and CCG membership), we cross-reference this code with GP Practice data published by NHS Digital. That data contains a column, status, which sometimes contains the value D, for dormant.
Recently, we’ve been experimenting with integrating the Dictionary of medicines and devices (dm+d) into our prescribing data. dm+d is the standard dictionary for the medicines and devices used across the NHS, and it contains codes and descriptions for these medicines.
There are several benefits to using dm+d; the most useful side-effect is to allow us to show user-friendly names for drugs. The canonical names for drugs in the NHS prescribing data are sometimes very hard to read. They are taken from the NHS’ own version of the British National Formulary, which uses heavily truncated names, full of abbreviations, so they can fit within an arbitrary 15-character limit.
OpenPrescribing takes open datasets from NHS Digital and NHS Business Services Authority, and makes it easy for people to explore the prescribing dataset. We also use this dataset in our research, and offer bespoke data extracts from the prescribing dataset for researchers, clinicians and NHS staff (get in touch!). In this series of blog posts we’ll explain key concepts and share our knowledge of the prescribing dataset. In the first blog, we take a look at BNF codes.