Enabling better access to healthcare data for the UK SME ...€¦ · Data access experiences –our...
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Enabling better access to healthcare data for the UK SME community Joanne Hartley , Mark Davies , Tim Newton, Dan Bond, Helen Hind, Nicola Heron and Mark Samuels Medicines Discovery Catapult, Alderley Park, Macclesfield, Cheshire, SK10 4TG Medicines Discovery Catapult operates with independence and impartiality across the entire supplier landscape to: 1. link the right Data Provider to the right Data Analysis company to deliver results for SME domain experts. 2. work with key stakeholders to remove the barriers that are preventing access and use of clinical data 3. support the industry in developing its skills and experience The role of Medicines Discovery Catapult Through research and engagement with SMEs, Medicines Discovery Catapult has built knowledge around SME needs in terms of healthcare data: 1. extensive know-how of the UK’s health data landscape 2. help for SMEs to support development of new medicines 3. tailored advice and recommendations about data sources 4. a series of data access guides We have developed a strong understanding of the UK- wide capabilities in medicines discovery, so we can help find the right partner or supplier for data via signposting and introductions. When researchers are unsure where to find the data they need, we will conduct a full search of the data landscape and provide a Data Availability Report, detailing suitable data holders, access procedures and requirements. We have compiled a series Data Access Guides for a number of the main UK data holders. These impartial overview documents aim to help SMEs consider if and how they can access data. We can provide practical support in completing Data Access Requests and Data Transfer Agreements. Initial client fact-find consultation Data Access Guides Data Provider Access Request Support Data Availability Report Data Analysis Provider Partnership Client knows what data they want but need guidance on access Client doesn’t know where to find the data they need Providing support for small medical research companies • There are 1,500 UK medicines discovery SMEs employing 21,000 people • 80% of these companies have fewer than 20 staff 1 • The ability to access and use health data offers many opportunities for SMEs to improve healthcare (e.g. developing novel medicines or predictive algorithms) • The UK has billions of data points collected from UK patients who have agreed that their data can be used for research • Small UK medical research companies struggle to access data We would like advice and assistance in completing a Data Access Request for UK Biobank. Health data access challenges for SMEs Timelines Negotiating Access Inaccessible Data Commercial Constraints Locating Data Analysis Infrastructure/ Expertise Publication / Data return Legal Barriers Cost Data Quality Conclusions We observed a strong requirement for health data access from the SME community to answer a range of drug discovery and development questions. However uptake and access is a clear problem. There is a role for Medicines Discovery Catapult to support the SME sector to tackle this Medicines Discovery Catapult will now: • conduct in-depth follow-up interviews with survey respondents to capture full experience and future requirements • publish a report of the full findings of our health data survey • develop an action plan to optimise support for health data access through process expertise and our network of established connections across the health data sector Our data consultation process Search Use cases Data Providers Data Analysis Service SMEs We would like to understand the data access procedures for UK Biobank and whether there are constraints around commercial access. We develop medical devices and software for personalised management of chronic diseases. We need access to longitudinal clinical trial data and would like help in locating it. We would like to understand if there is a UK source of clinical vital signs data. Data access experiences – our survey results Medicines Discovery Catapult is a national facility connecting the UK community to accelerate innovative drug discovery. We provide unique scientific capabilities and act as a gateway to UK resources and expertise, supporting UK SMEs to drive the development and industrialisation of new approaches for the discovery of new medicines. By validating novel approaches off discovering medicines and driving key talent and expertise across the sector, we will support the UK life sciences industry, SMEs and innovators to deliver growth for the UK economy and maintain the UK’s heritage position as a global leader in medicines R&D. Ultimately, new industrialised technologies are vital for delivering new medicines to patients, faster. To find out more visit md.catapult.org.uk 1 State of the Discovery Nation 2019 report, Medicines Discovery Catapult
Transcript of Enabling better access to healthcare data for the UK SME ...€¦ · Data access experiences –our...
Enabling better access to healthcare data forthe UK SME community
Joanne Hartley, Mark Davies, Tim Newton, Dan Bond, Helen Hind, Nicola Heron and Mark SamuelsMedicines Discovery Catapult, Alderley Park, Macclesfield, Cheshire, SK10 4TG
Medicines Discovery Catapult operates with independence and impartiality across the entire supplier landscape to:
1. link the right Data Provider to the right Data Analysis company to deliver results for SME domain experts.
2. work with key stakeholders to remove the barriers that are preventing access and use of clinical data
3. support the industry in developing its skills and experience
The role of Medicines Discovery CatapultThrough research and engagement with SMEs, Medicines Discovery Catapult has built knowledge around SME needs in terms of healthcare data:
1. extensive know-how of the UK’s health data landscape2. help for SMEs to support development of new medicines3. tailored advice and recommendations about data sources4. a series of data access guides
We have developed a strong understanding of the UK-wide capabilities in medicines discovery, so we canhelp find the right partner or supplier for data viasignposting and introductions.
When researchers are unsure where to find the data they need, we will conduct a full search of the data landscape and provide a Data Availability Report, detailing suitable data holders, access procedures and requirements.
We have compiled a series Data Access Guides for anumber of the main UK data holders. These impartialoverview documents aim to help SMEs consider if andhow they can access data.
We can provide practical support in completing Data Access Requests and Data Transfer Agreements.
Initial clientfact-find
consultation
Data Access Guides
Data Provider Access Request
Support
Data Availability Report
Data Analysis Provider
Partnership
Client knows what data they want but need guidance on
access
Client doesn’t know where to find the data they need
Providing support for small medical research companies• There are 1,500 UK medicines discovery SMEs employing 21,000
people• 80% of these companies have fewer than 20 staff1• The ability to access and use health data offers many
opportunities for SMEs to improve healthcare (e.g. developing novel medicines or predictive algorithms)
• The UK has billions of data points collected from UK patients who have agreed that their data can be used for research
• Small UK medical research companies struggle to access data
We would like advice and assistance in completing a Data Access Request for UK Biobank.
Health data access
challenges for SMEs
Timelines
Negotiating Access
Inaccessible Data
Commercial Constraints
Locating Data
Analysis Infrastructure/
Expertise
Publication / Data return
Legal Barriers
Cost
Data Quality
ConclusionsWe observed a strong requirement for health data access from the SME community to answer a range of drug discovery and development questions. However uptake and access is a clear problem.
There is a role for Medicines Discovery Catapult to support the SME sector to tackle this
Medicines Discovery Catapult will now:
• conduct in-depth follow-up interviews with survey respondents to capture full experience and future requirements
• publish a report of the full findings of our health data survey• develop an action plan to optimise support for health data
access through process expertise and our network of established connections across the health data sector
Our data consultation process
Search
Use cases
Data Providers
Data Analysis Service
SMEs
We would like to understand the data access procedures for UK Biobank and whether there are constraints around commercial access.
We develop medical devices and software for personalised management of chronic diseases. We need access to longitudinal clinical trial data and would like help in locating it.
We would like to understand if there is a UK source of clinical vital signs data.
Data access experiences – our survey results
Medicines Discovery Catapult is a national facility connecting the UK community to accelerate innovative drug discovery.
We provide unique scientific capabilities and act as a gateway to UK resources and expertise, supporting UK SMEs to drive the development and industrialisation of new approaches for the discovery of new medicines.
By validating novel approaches off discovering medicines and driving key talent and expertise across the sector, we will support the UK life sciences industry, SMEs and innovators to deliver growth for the UK economy and maintain the UK’s heritage position as a global leader in medicines R&D.
Ultimately, new industrialised technologies are vital for delivering new medicines to patients, faster.
To find out more visit md.catapult.org.uk
1 State of the Discovery Nation 2019 report, Medicines Discovery Catapult
