Alleviate – the Advanced Pain Discovery Platform (APDP) Data Hub

About Alleviate Pain Data Hub

• The purpose of Alleviate

  Chronic pain is a major unmet global public health challenge.

  Chronic pain is defined as pain that lasts three months or more and affects at least 3 in 10 people in the UK, causing more disability than any other condition, anywhere in the world.  Causes of chronic pain include arthritis, other musculoskeletal disorders, cancer, fibromyalgia and migraines, but there are numerous other triggers, and often an underlying diagnosis cannot be found. Chronic pain has a detrimental impact on an individual’s overall health, quality of life, ability to function and work, family life and even wider society. Chronic pain often occurs alongside other debilitating health conditions, such as depression, diabetes, and/or heart disease, increasing the negative impact on those affected. Research into causes and management is a priority for people living with pain, as well as their families, carers, and the communities they live in.

  “Research increases the chances of a better future for everyone living with long term pain” 

  – Kathy, Alleviate Patient and Public Involvement and Engagement (PPIE) Member

  To help address this challenge and improve the lives of people affected by pain conditions, a better understanding of the mechanisms of pain and improved treatments are needed. Many research cohorts exist across the UK containing relevant pain-related data and there has been no national approach to co-ordinating and managing these data.  This has resulted in data siloes limiting the ability to link data between the various research cohorts and national efforts collecting data at the point of care. The aim of Alleviate is to enable discovery and federated querying of these remote datasets through a common standard and national interface. This is being achieved by breaking down the siloes, converting data to the common OMOP data standard and making it accessible via the HDR UK Innovation Gateway.

  

  Alleviate is the APDP Pain Research Data Hub. Alleviate is transforming UK pain datasets to be Findable, Accessible, Interoperable and Reusable (FAIR) through the use of open access tooling and common data standards. The project team are experts in data mapping to the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) for the purposes of data standardisation and UK federation. The Data Hub is working with a variety of UK data stakeholders to support their needs for FAIR data and ultimately to improve lives.

  Alleviate forms part of an exciting larger £24M initiative to try and address the problem of chronic pain: The Advanced Pain Discovery Platform (APDP). The APDP is co-funded by MRC, Versus Arthritis and Eli Lily, and involves people living with chronic pain. The initial two phases of the Platform consist of Alleviate (the data hub) and four consortia, to be supplemented by several linked research grants. This innovative approach aims to break through the complexity of pain by delivering a consortium-based platform of national scale, generating discovery and early translational science.

  

  The four APDP multidisciplinary consortia are:

  • Partnership for Assessment and Investigation of Neuropathic Pain: Studies Tracking Outcomes, Risks and Mechanisms (PAINSTORM)
  • Consortium to Research Individual, Interpersonal and Social Influences in Pain (CRIISP)
  • Consortium Against Pain InEquality (CAPE) – The impact of adverse childhood experiences on chronic pain and responses to treatment
  • ADVANTAGE visceral pain consortium: Advanced Discovery of Visceral Analgesics by Neuroimmune Targets and the Genetics of Extreme human phenotypes

  Alleviate will collaborate with the APDP consortia (and other groups) to provide a shared platform and data resource.

• What Alleviate do

  Guided by leading experts in pain research in partnership with the NHS, APDP consortia, people with lived experience of chronic pain and industry, Alleviate will:

  • Bring together, curate and improve existing datasets that are valuable to people researching chronic pain.
  • Be central to all data and results generated by all of the APDP research programmes, including the large consortia and hypothesis driven research projects.
  • Support research projects to reveal new and improved treatments across diverse chronic and debilitating pain conditions.

  Alleviate will tackle the long-term research challenges in understanding the complexity and unpredictability of pain by:

  • Providing a key resource for national and international pain communities, that will encourage sustainability for the whole pain research community.
  • Making available high quality, chronic pain focused research datasets to researchers, safely and securely within the HIC Trusted Research Environment.
  • Allowing linkage of these pain datasets to other relevant datasets, including routine health and social care records (e.g. prescribing and hospital admission), and research on other relevant conditions (e.g. mental health).

  The Hub is using the expertise built from the Health Informatics Centre (HIC) at University of Dundee and the CO-CONNECT project, with expert understanding of data standards and continued development of open-source tools to streamline data mapping in collaboration with University of Nottingham. Alleviate will participate in the UK Health Data Research Alliance which brings together leading health, care and research organisations to establish best practice around the ethical use of UK health data for research and innovation at scale.

• Alleviate's approach

  Alleviate is delivering five new capabilities:

  1. A platform for discoverability and feasibility analyses to understand if the required data and/or populations can answer research questions available through the HDR Innovation Gateway.
  2. Standardised and curated pain data across different modalities such as text, genetic and imaging data.
  3. The ability to link pain cohorts to multi-dimensional routine health and non-health related datasets UK-wide.
  4. Development of a robust UK-wide health data infrastructure to enable long-term impact and persistence.
  5. Ability to securely analyse data in the scalable HIC Trusted Research Environment.

  Alleviate provides a hybrid architecture where data partners can participate with their current governance and consent. The custodians of each pain dataset will choose whether to send data to the centralised hub or act as a federated node based upon data governance, size and complexity of the data and technical feasibility.

  Alleviate is focusing on its long-term sustainability; services will be strengthened in the coming months, with domain expertise applied to use the Cohort Discovery Tool (CDT) for real-world data needs and collaborate with other pain-related or data-rich communities to solve common problems. This will allow the Hub to facilitate wider APDP research community to develop phenotypes for sharing through the library. The Hub will continue to work with the HDR UK Technology Team to develop the CDT while growing the available pain relevant datasets.

• Who Alleviate work with

  The Hub is led by the University of Dundee, University of Nottingham, King’s College London, Imperial College London, University of Oxford, University of Bath, and Cambridge Institute for Medical Research.

  Alleviate works with universities, the NHS, health charities, public body policy makers, and industry groups such as:

  • The APDP Consortia: PAINSTORM, CAPE, CRIISP, and ADVANTAGE
  • NHS England
  • Public Health Scotland (PHS)
  • SAIL Databank
  • Amazon Web Services (AWS)
  • Global Alliance of Partners for Pain Advocacy (GAPPA)
  • International Association for the Study of Pain
  • The Scottish Safe Haven Network (SSHN)
  • Medical Research Council (MRC)
  • Versus Arthritis
• How Alleviate benefits patients and the public

  Alleviate: The APDP Data Hub will provide data, infrastructure and research services to support pain research at scale. Such research will provide new knowledge and understanding about chronic pain and its impact, to allow an individually targeted approach to management, that takes account of the significant variation and unpredictability that people living with chronic pain face. The research supported will:

  • Uncover the biological, psychological, and sociological mechanisms which lead to long-term pain; this will include those that are shared between different types of pain, as well as those that are specific to individual diagnoses.
  • Improve diagnosis and treatment.
  • Provide new pain biomarkers, allowing objective assessment and measurement of pain.
  • Identify and validate new treatments.

  People who live with pain are at the heart of Alleviate. As the Alleviate project aims to support researchers tackling chronic pain by collecting data about pain conditions, active patient involvement is at its core, and as a result, the project welcomes engagement from a range of individuals. These important and valued lived experience perspectives  will enable researchers to fully understand and tackle the long-term research challenges in understanding the complexity of chronic pain conditions.

  Patient representatives with a lived experience of pain are an integral part of the leadership team, actively contributing at all levels within the Hub. They lead on engagement and dissemination strategies to maximise input, output, impact and patient benefit. Their engagement takes many forms such as sharing their own experiences of living with pain to the wider community via social media videos and campaigns to working on abstracts and posters for conferences and presenting their work at these.

  We have established a large group of patient and public representatives to feed into Alleviate, and now have a pain community of almost more than 300 members. If you are interested in joining this group, please contact complete our online form.

  The aim of the APDP, to move away from silo working to an actively collaborative approach, is essential to deliver on advances to improve the lives of people living with chronic pain. As the APDP Data Hub, Alleviate is central to this, bringing together the individual consortia through the Hub, enabling connections that otherwise would not have happened.

  One of our Patient Insight Partners (PIP) provided the analogy: “You have to put books in the library to enhance knowledge”. The proposed use of innovative approaches to data discovery, standardisation, curation and cleaning, along with automation and a scalable secure infrastructure will create a powerful resource, that will be informed by what matters to people living with chronic pain.

• Alleviate case studies

  Population datasets mapped

  Alleviate’s extensive knowledge and experience of mapping data sets to the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) standard has led our team of expert data engineers to be involved in mapping multiple large population scale datasets to the OMOP standard.

  From Public Health Scotland, we have mapped the following data sets covering areas such as Vaccinations, Cancer, Day Case and prescription data sets. We have also mapped the Scottish Health Research Register and Biobank (SHARE) data set.

  Mapping these large-scale datasets to OMOP supports FAIR principles by making the data Findable, Accessible, Interoperable and Reusable. This allows the data to be onboarded into the HDR UK Cohort Discovery Tool. This raises the visibility of the data sets and allows researchers to run discovery queries and determine whether these datasets have relevant data that would aid their project; this tool also makes it easier to request access to relevant data returned through the discovery queries. It also means that the data is in a consistent format so that it is easily reusable and easily usable with other OMOP’d data.

  UK Pain Survey

  A longstanding relationship between one of our PPIE team members with Chronic Pain Australia and Pain UK has led to a collaboration with the APDP to replicate an annual national pain survey within the UK. The aim of the survey is to bring to the surface the voices of those with lived experience of pain to provide input into the areas of research that matter and to input into policy.

  PPIE Input into external Pain research proposals

  Due to the elevated awareness of Alleviate within the Pain community, researchers writing grant proposals and fellowship applications have been requesting assistance from our PPIE team to review their proposals. They are specifically looking for input from public and patient members with a lived experience of chronic pain to provide input on the relevance of the research and input on how the team feel about the proposals.