Nearly 140,000 patients in north west London can now take part in research through Imperial Health Knowledge Bank
Over 139,500 patients in north west London are now registered with Imperial Health Knowledge Bank to share their routine health information and be contacted directly about research studies they may be interested in.
The increase in registrations follows integration between the Care Information Exchange – London's personal health record platform – and Imperial Health Knowledge Bank. This means patients who have opted into receiving information on research via Care Information Exchange can now be invited to participate in studies that are relevant to them through Imperial Health Knowledge Bank, which is closely linked with Trust research and therefore provides a clearer route to these opportunities.
Imperial Health Knowledge Bank, which is led by Imperial College Healthcare NHS Trust and funded by the National Institute for Health and Care Research (NIHR) Imperial Biomedical Research Centre (BRC), is a database of patients who are willing to be contacted directly about clinical trials and studies that could be relevant for them and who have agreed for the Trust to collect and store their health information and samples for research.
Imperial Health Knowledge Bank is also supported by the iCARE team at Imperial College Healthcare, who manage the Trust’s secure data environment, and have managed the integration of data, which remains stored safely in Trust-managed data systems. The team also support by identifying suitable patients to contact about studies.
Partnership offers research opportunities to more people
Patients in north west London who are receiving routine care at the Trust can register on the Care Information Exchange, which provides easy access to hospital information such as appointments, test results, letters and treatment plans. There is also an option for patients to say they are happy to be contacted about research opportunities.
Patients who have said ‘yes’ to being contacted about research on the Care Information Exchange can now be invited to participate in studies relevant to their health. Participation is entirely voluntary and choosing not to take part will not affect care, with patients also able to withdraw at any time without giving a reason.
Commenting on the expansion, Professor Mark Thursz, director of the NIHR Imperial BRC, said: “Continual development and expansion of Imperial Health Knowledge Bank is a key to improving the diversity of participants in the clinical trials we lead and ensuring the research we do is relevant to and representative of the communities we serve. Imperial Health Knowledge Bank now provides all patients in north west London with an easy opportunity to get right to the heart of medical science and play a role in the development of new treatments, drugs and tests that could have a huge impact on the lives of others.”
First research projects using Imperial Health Knowledge Bank approved
Five studies using data from Imperial Health Knowledge Bank have now been approved. Access to Imperial Health Knowledge Bank data is only available via a dedicated access committee, run by iCARE and approved by the Health Research Authority.
Two of the studies are actively recruiting patients – one looking at using an existing medicine to improve blood flow and reduce symptoms in patients with dementia and stroke and the other looking at how inhaled steroids might reduce cardiovascular risk in patients with chronic obstructive pulmonary disease (COPD). To find out more about these studies please contact imperial.healthknowledgebank@nhs.net
Dr David Owen, who leads the study with patients living with dementia and stroke, said using Imperial Health Knowledge Bank to approach patients who might be interested in taking part simplified the process and increased recruitment: "Imperial Health Knowledge Bank has been a game changer for recruiting people into our studies. People referred to us from there have already been given lots of information about our study and are keen to hear more, so we have had a much higher success rate when it comes to recruiting them because the process has been much clearer for them."
