Patients in research

We believe that everyone should be offered the opportunity to participate in research that may improve their health outcomes or the health outcomes of their family and friends.

Patient electronic health records (EHR) contain a vast amount of information that holds the key to medication getting to the right patients faster, making medications cheaper. Everybody deserves the opportunity to have the best treatment available and this is possible through patients like yourself agreeing to take part in research.

Some of the ways you can get involved in research facilitated by NWEH are via the research for the future project run by the NIHR CRN Greater Manchester or clinical trials run or facilitated by NWEH.

Research is at the heart of the NHS and it helps to discover the best ways to prevent, diagnose and manage illnesses. The medicines and treatments used today are only available thanks to volunteers taking part in research studies in the past.

How your data is used

The research NWEH conducts or facilitates requires access to computerised information from your electronic health record (EHR). Different types of data are needed for different types of research. Clinical trials usually require identifiable data to be collected – the types of data required are dependent on the trial’s aims and objectives – clinical trial data is collected once you’ve given consent. During the consent process, you’ll be given detailed information about the storage and handling of your personal data relevant to the trial.

To find and invite patients to take part in research, NWEH’s FARSITE system can be used. The data from your electronic health record is anonymised and searches are run by research staff or NWEH over an anonymised data set using FARSITE. Only certain information such as your age range, medication, and ethnicity are visible to the researcher. The researcher cannot identify an individual from this data as all personal details (name, address, postcode, and full date of birth) are obscured and protected using a computer process called pseudonymisation.

Data protection and patient confidentiality

For all research conducted or facilitated by NWEH, your identifiable data never leaves the protected NHS N3 network. For more information on how your data is protected, visit the Data Standards and Regulatory Compliance page. Your data remains secure and confidential at all times.

During the conduct or facilitation of clinical trials, the searches that research staff run will locate GP practices where patients matching a criterion are based. Your GP will be able to identify you from these searches and may invite you to take part in research. NWEH’s clinical team work closely with GP sites to deliver research studies and NWEH staff are honorary practice members and are part of the GP practice team. This means that we are, bound by the same confidentiality agreements as all NHS staff. As part of your care team we may need to look at your healthcare records to see if you are suitable to take part in research.

GP data, collected and processed for FARSITE, is transmitted across the NHS (N3) network, using high grade encryption, by either: the local NHS data host; the GP System Supplier; or Wellbeing Software (formerly Apollo Medical Systems Ltd). Patients in GP practices participating in FARSITE should be informed of the potential uses of their data, in line with the fair processing requirement of the first principle of the Data Protection Act (DPA).

Research for the future never passes patient details onto researchers – instead the research for the Future team will, following your voluntary registration, contact you via your chosen method of communication. If you are interested in taking part in the study, you will be advised how to get in touch with the researcher.

Further information

If you want to know more about getting involved in research, have seen one of our posters in your GP surgery and want more information, or you would prefer to opt out of taking part in any research, speak to your local health centre or your GP today.

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FARSITE

FARSITE is a rapid ‘search and find’ tool designed to preserve patient confidentiality. FARSITE provides a safe, convenient and effective way for your GP to control the recruitment of patients into clinical research, whilst allowing NHS-based researchers to run complex searches over anonymised population level health record data.

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