Amanda Lucas, Director of Information, in our latest blog, reflects on being part of Discover-NOW, Health Data Research Hub for Real World Evidence.
As we head into 2021, it is important to take a moment to pause and reflect on the last extraordinary 12 months. At a time when health data has never been further up the global, national and local agenda; it is vital to capture and ensure lasting impact of what has been achieved through research as we continue to support the fight against Covid-19.
Here at Discover-NOW 2020 saw us achieving our first Hub milestone, pivot at pace to support the Covid-19 research response while also marking our first anniversary, and working collaboratively in our ambition to become sustainable. I am pleased to be able to share some highlights with you:
Increasing Covid-19 research response
We are continuing to support Covid-19 research through ensuring that requests to access NWL’s depersonalised Covid-19 linked data set are reviewed in a timely manner and with the appropriate rigor and governance. Our support in establishing the COVID-19 NWL Data Prioritization Group has resulted in the approval of over 30 research studies boosting the national effort and focus on improving our understanding of this disease and the impact on our communities and healthcare sector. It has also developed the data linkage and curation to include Pathology data patient level data related to COVID admissions in hospital since the outbreak of the pandemic, includes bed status/ventilation status.
Using real world evidence to improve our understanding of Type 2 Diabetes (T2DM)
At Discover-NOW, working in partnership with AstraZeneca, we have been focused on how real-world evidence can improve understanding of many long-term conditions. Through our developing service offer, we have enabled AstraZenica’s approach to improve the T2DM clinical pathway. This has been achieved through a stepped approach, firstly, working in collaboration to carry out retrospective studies to gain a clear baseline for current clinical practice. Next, this baseline has enabled us to support the design of new pathways which can use new technology such as health apps for managing T2DM. Lastly, we are now able to use our access to real-world evidence to evaluate these new pathways and technologies to prove the impact and delivery of T2DM care.
North West London Health Research Register
Our North West London Health Research Register, a consent-to-contact tool for people living in NWL, reached over 8000 registrants this year. During the first wave of Covid-19 it enabled the registrants the opportunity to contribute to the fight against coronavirus via online research, through two national COVID-19 studies. We have extended our recruitment channels to include digital sign up through Apps, the Personal Health Record in operation across NWL and Imperial Knowledge Bank and expect significant growth in recruitment in 2021.
FARSITE (Feasibility And Recruitment System for Improving Trial Efficiency)
We are pleased to be introducing a feasibility and recruitment another tool to NWL in collaboration with our partners North West EHealth. This tool known as FARSITE enables a fast and accurate way for GPs to decide whether their patients should be contacted to be invited to participate in specific research studies. Introduced only a few weeks ago we already have over 130 GP practices signed up covering a population of 560,000 patients We are looking for opportunities to partner with industry and research organisations to test out this new tool in 2021.
Trusted Research Environment
Work is underway with IBM, a Hub technology partner, to develop a high-performance analytics environment to host and provide access to the de-personalised data in a safe and trusted way to the data for researchers. We expect this environment to be available by the middle of 2021 and will significantly improve the utility of the Discover data and aims to be be a key enabler of the Hub sustainability planning,
Building Public Trust
Earlier in the year we were proud to be part of our One London partner’s deliberative engagement events. We welcomed their Public deliberation in the use of health and care data report giving us an impressive depth of insight into public expectations on the use of health and care data. We are now pressing ahead to further align with their recommendations, in particular, to establish a Citizens Advisory Group (CAG). It will form part of the Hub’s governance structure and directly inform future decision making and policy development. It will take a deliberative approach to engaging on key policy areas relating to our work and be reflective of North West London’s diverse population.
We are proud to have reached our first milestone along with the six other Health Data Research UK Hubs, all being centres of excellence with expertise, tools, knowledge and ways of working to maximise the insights and innovations developed from the health data. This has included us being part of the Health Data Research Innovation Gateway which provides a growing library of information about health datasets held and managed by the NHS, research charities, institutes and universities. It also has UK-wide details of training and education courses for health data. You can learn more about the gateway in this short film: https://youtu.be/zAnoBdimXmI
Spreading our work
We are delighted that this year, together with our partners NWEH, we are the first international collaborators to join the NESTcc Research Network. Through joining this renowned network, we have the opportunity to learn, share, and scale the insight gained through our securely governed research environment with other real-world evidence experts.
Our portfolio of work is steadily increasing with six academic papers published, enabling many real-world evidence studies such as, a three year-long observational study that aims to investigate any exacerbation of COPD symptoms. Also retrospective real-world evidence studies to make improvements to existing products or map out clinical pathways such as, examining the burden of asthma and risk of poor outcomes in children and young people in NWL.
Virtual series of events
We are currently working with MedCity to collaborate with two other hubs, DATA-CAN, and INSIGHT, to deliver a short series of virtual seminars designed to showcase how health data is helping research and explore how the life sciences industry, including small and medium enterprises, can work with the hubs. The first virtual seminar will be on 3 February 2021, sign up here.
As we look ahead to 2021, we will continue to grow and build upon our work through strengthening our partnerships and collaborations. As we do so, we will improve our datasets, increase our valuable data and service offer and showcase our innovative ways to involve and engage the public and patients. There has never been a more important time to ensure that health data is at the heart of research into treating and preventing disease.
Thank you for your support in Discover-NOW and we look forward to continued collaboration in 2021. Wishing you and your families a restful, festive and safe Christmas.