Enhanced information technology framework and public-patient involvement in UK national HIV databases.

Lead Research Organisation: University College London

Abstract

Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.

Technical Summary

In the UK, a collection of clinical and laboratory datasets have arisen from the management of patients infected with HIV. Whilst these databases have become increasingly integrated over the last five years, changes to the health service environment, the changing nature of the HIV epidemic and local information technology resource limitations mean that they may no longer be able to address the research questions of most importance to the HIV population. Furthermore, the linkage of these databases raises concerns around data confidentiality that must be addressed. Our proposal includes three main activities: 1) the development of existing databases to enhance their quality and completeness, to ensure that all databases continue to meet good practice standards in data security, and to develop a platform for integrated data that will ultimately facilitate easier integration of the NHS Care record as it comes online; 2) the development of tools to link viral epidemiology data with surveillance data and the use of these to uncover the gynamics of viral spread in the UK; and 3) the provision of necessary training and public engagement activities to reinforce the importance of data protection and privacy management in this highly sensitive disease area.

Publications

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Leigh Brown AJ (2011) Transmission network parameters estimated from HIV sequences for a nationwide epidemic. in The Journal of infectious diseases

 
Description EHR4CR Electronic Health Records for Clinical Research (16m euros across 34 participants)
Amount £387,125 (GBP)
Funding ID 115189 
Organisation European Commission 
Sector Public
Country European Union (EU)
Start 01/2011 
End 01/2015
 
Title CHIPS Data Dictionary 
Description Data dictionary for CHIPS 
Type Of Material Improvements to research infrastructure 
Year Produced 2012 
Provided To Others? Yes  
Impact Simplification of data submission process and greater possibilities for collaboration. 
 
Title Linkage validation techniques 
Description Ongoing linkage validation techniques developed 
Type Of Material Improvements to research infrastructure 
Year Produced 2012 
Provided To Others? Yes  
Impact These methods will inform ongoing support of the DHICE Common Data Repository 
 
Title Master Patient Index 
Description Master patient index to identify studies that each individual is a participant in. 
Type Of Material Improvements to research infrastructure 
Year Produced 2012 
Provided To Others? Yes  
Impact Through the Master Patient Index it is now possible to share key data (including dates of clinical interventions and deaths) securely across the study partners 
 
Title Security policy 
Description Completion of security policy framework for secondary health care data use projects - both cohort research and surveillance studies (pending deployment and use in projects, as well as implementation as an online policy management tool) 
Type Of Material Improvements to research infrastructure 
Year Produced 2011 
Provided To Others? Yes  
Impact Will enable all participating studies to update their own security policies. 
 
Title UK CHIC data dictionary 
Description Completion of a data dictionary / metadata site for UK CHIC collection data - a tool for NHS Data Managers and Researchers; 
Type Of Material Improvements to research infrastructure 
Year Produced 2011 
Provided To Others? Yes  
Impact Simplification of data submission process for local data managers. Increased possibilities for collaboration with other studies. 
 
Title UK Register of HIV Seroconverters Data Dictionary 
Description Data dictionary for UK Register of HIV Seroconverters 
Type Of Material Improvements to research infrastructure 
Year Produced 2012 
Provided To Others? Yes  
Impact Simplification of data submission process and increased possibilities for collaboration 
 
Title Visualisation tool 
Description UK DHICE website underway along with the visualisation tool completion - this is pending completion of editorial review and additional updates; 
Type Of Material Improvements to research infrastructure 
Provided To Others? No  
Impact To be disseminated in 2012. 
 
Description Data Encryption workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact Attended by HIV patient community members as well as data managers and researchers.

Community Advisory Board representatives expressed interest in a follow up workshop for treatment advocates and patient community representatives to consider their anxieties and discuss the reassurance that they would like that their data is being handled appropriately and is well protected
Year(s) Of Engagement Activity 2011
 
Description Data Managers meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Workshop Facilitator
Geographic Reach National
Primary Audience Health professionals
Results and Impact Attended by 20 data managers and research nurses which led to extensive discussion about the problems they encounter.

Successful Data Managers meeting in October - data collection issues and new tools were discussed.
Year(s) Of Engagement Activity 2011,2012
 
Description Poster on Information Governance 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact A poster was presented at the the Virtual Physiological Human
European Commission Network of Excellence Conference 2010. The title was "Information Governance And Security When Using Health Care Data For Biomedical Research".



The poster sparked discussions from a very different audience.
Year(s) Of Engagement Activity 2010
 
Description UK Community Advisory Board 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact Researchers described the project to 30 representatives from the UK HIV Advisory Board and answered questions afterwards.

New ideas for analyses were proposed as a result of the meeting.
Year(s) Of Engagement Activity 2010
 
Description UK Community Advisory Board (2) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact The PI provided training in the statistical methods for observational studies to the UK HIV Community Advisory Board

With the additional confidence that this training provided, several members of the group have offered to become involved in the study management of our ongoing and new research studies.
Year(s) Of Engagement Activity 2010
 
Description UK Community Advisory Board (3) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact 30+ community members attended session on Patient Information Security

It is hoped that session has alleviated some of the HIV communities concerns about data security.
Year(s) Of Engagement Activity 2012