Ralph Evans, Commercial and Partnerships Lead for PIONEER Hub, recently joined a webinar exploring the opportunities and benefits that Health Data Research UK (HDR UK) can bring to innovators and SMEs. Delegates learnt about the HDR Innovation Gateway, a platform for discovering and requesting access to detailed UK health datasets for research and innovation.
Among the resources available through HDR Innovation Gateway are access to seven HDR UK Health Data Research Hubs and attendees were also given a deeper insight these Hubs exemplified by PIONEER, as explained by Ralph.
The full video below includes an introduction to HDR UK by Amanda White, Executive Director of Communications, as well as a rundown of the Innovation Gateway by Vicky Hellon. The PIONEER talk begins at around 15:05.
Ralph’s talk in full is transcribed below:
Good afternoon everybody, my name’s Ralph Evans and I’m the Commercial and Partnerships Lead for PIONEER hub. I’m here today to discuss our hub’s offer, and explain how we would like to work with SMEs within your region
PIONEER is the Health Data Research Hub for Acute Care and we were set up in November 2019. PIONEER was built upon the expertise of digital health data curation and data sharing analytics of University Hospitals Birmingham NHS Foundation Trust and the University of Birmingham along, with other partners.
Our primary aim is to improve the health and wellbeing of patients through increased understanding of acute illness – and we define acute care as being any unplanned health episode. Data from NHS England shows that the national urgent and emergency care services respond to more than 110 million urgent calls or visits every year, so PIONEER aims to improve the understanding by better appreciating the diagnostic timelines, healthcare pathways, and treatments that patients undergo – and this can include data from a range of settings including primary care or even the ambulance service.
We achieve this through responsible data sharing, with robust governance and ethics in place. All applications for data are reviewed by our Data Trust Committee which is made up of patients and members of the public and all approved applications for data and any other supported analytics are all approved under license.
PIONEER’s objective is to allow innovative healthcare companies to develop, test and deliver advances in clinical care utilising real-world data, and this covers a wide range of products and solutions. It could be a company who have created a software that goes into a wearable device; it could be a company looking to test an AI algorithm that assists clinicians in diagnosing people presenting at A&E with certain heart conditions – so all of these things can be created with access to our data and services.
These companies can be SMEs or at the very beginning of their product development journey, or SMEs who are established companies with dozens of medical solutions – we are very much open to all.
PIONEER is one of the most complete records of acute healthcare journeys available for research innovation. Our data is condition- and disease-inclusive: it focuses on the patient in their entirety without a disease or organ-based approach, so PIONEER captures elements such as:
- The reason for requesting unplanned medical assistance
- Previous medical conditions, operations, or procedures someone has had
- Any medications or allergies they are on
- Vital signs such as heart rate, blood pressure, breathing rates
- All laboratory tests as well, so blood or urine tests
- All imaging reports and copies of de-identified images such as chest x-rays
- Complications of illness and new diagnoses, so heart attacks or strokes that they may have had
- Severity of the illness – so were they admitted to intensive care breathing or was other organ support needed?
- Patient transfers that may take place within the hospital, so between an A&E department, wards or the intensive care units
- Final outcomes, so was the patient discharged to their own home, a new social care setting or anywhere else
- What further outpatient care was organised, so referrals to clinics, physiotherapy, or further tests were ordered
To give you some high-level numbers: we have approximately 21 years of longitudinal data comprising of just over 1 million distinct patients, so this includes accounts of 70 million drug administrations; 100 million blood pressure readings; and 200 million blood test results.
Our data can be refreshed in near-real time for the study purposes, and organisations can request multiple data drops if needed. To see more on the data that we have you can click on the image in the slide deck when it’s sent around and you’ll be taken to our website, where we have a whole page dedicated to this.
The data service is available so there are a number of considerations when looking at what PIONEER offers. The first thing to consider is that data access is licensed. This means that researchers can only use the data for the purpose on the on the license and not any other project, and it also means that data cannot be shared beyond the license agreement, and it also means that the data provided is selective and sufficient – so it’s enough to answer the question of the study, but we don’t give out any more.
Data is shared only when data security has been agreed and approved by PIONEER – I’ll cover the application process shortly – so usually this means that data is only shared in a Trusted Research Environment. PIONEER’s TREs do not contain any health data not directly related to the project – the data does not leave that TRE, only the study outcomes – and once the data has been used to answer the specific project, usually after an agreed period of time, the data is removed and the TRE is enclosed.
The data services offered by PIONEER are varied and when we commence discussions with organisations, we raise this early to ensure it can be factored into their thought processes. I don’t have time today to cover the costing model but please drop me an email if you’re interested and we can have a separate call.
There are two broad services on offer, these being ‘data as a service’ and ‘consulting as a service’, and these can be accessed independently or as a combined offer.
Data as a service operates on the principle that we extract transform and link the data, often from multiple sources and providers, and we then enrich the data by cleansing and anonymising it along with other processes. This means that we then create a bespoke data set which is in a format that allows companies to make actionable insights immediately.
The consulting services are provided by our team of analysts and clinical staff. Examples of things we previously offered include data right insight and analytics, artificial intelligence algorithm expertise, and also clinical access to some of our clinical experts to assist in study outcomes.
Applying for access
The application process is split into five stages. Process one is the application itself, so the inquiry comes in via HDR UK portal or direct to PIONEER via our website. The commercial team will then review and respond, and then we hold an initial meeting where we discuss the application looking at the study purposes. Process two – what we do is conduct a data scoping exercise, so this allows both sides to understand the data being requested, the request that finalises the application, along with any consulting services they may need. We then produce a quotation which is sent and subsequently approved, then we do a data request form which is completed along with the data fields that the requester would like. This moves to the approval process – so this is where our Data Trust Committee, that I mentioned earlier, meet and review the application primarily from the viewpoint of the patient benefit.
Providing that’s agreed, we then proceed – that is then fed back to the requester and we move on to the commercials. This is broadly split into three phases: the first is the TRE – the trusted research environment – how you access the data. We do a range of TREs – we either have our standard, or we can build a TRE to suit the purposes of the organisation. We also then sort out the contracts, so how we actually go about signing off the data for your access, and then the data set itself where we make sure it’s actionable out the box. The fifth process is the access: this means that the data set is available to access usually via TRE, along with any associated consulting services the company may have bought. At the end of the agreed study period the access can be extended or the data is removed and the TRE is taken down.
I hope that has been very helpful in giving you a very quick overview of PIONEER and our range of services. Please feel free to contact me directly to set up further calls, and I can cover more areas in greater depth if you wish.