Enhanced information technology framework and public-patient involvement in UK national HIV databases.
Lead Research Organisation:
University College London
Department Name: UNLISTED
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.
Organisations
People |
ORCID iD |
Caroline Sabin (Principal Investigator) |
Publications
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 |