Building an online platform to test personalised patient information leaflets - Pfizer

What is the health issue?

More than one billion medicines are prescribed each year in the UK, but a large proportion of patients do not take their medication as instructed, which can lead to worse health outcomes. Providing patient information leaflets (PILs) for all medicines has been a legal requirement in the UK since 1999.  They provide accessible information to patients about the medicines they are taking. Electronic PILs (ePIs) can be used to improve patient experience and outcomes by providing access to trusted, up-to-date, tailored information in a digital format, but are not yet widely available. Helping patients take their medicines correctly should lead to improvements in patient outcomes and reduce the burden on the NHS through fewer unnecessary visits due to taking medication incorrectly.

What are the researchers trying to find out?

Through this project, Pfizer is seeking to understand whether it is possible for ePIs to be integrated within healthcare records to produce content relevant to the individual, including their health profile, demographic and additional needs.

Why does the research require the use of health data?

This project requires access to anonymised data from healthcare records to tailor the content of the ePI to the patient. This will ensure that the content of the ePI is relevant to the individual’s health profile, including their other health conditions and demographics.

How is the research being done?

Pfizer is working with the NHS Kent, Medway and Sussex Secure Data Environment (SDE) to tailor medicines information in the ePI which can be integrated into patient healthcare records.   

Access to anonymised patient healthcare records via an SDE ensures that only people with permission have access to the data. This is done by employing strict security measures to prevent people who do not have permission from getting access.

The project involves feedback from patients, healthcare professionals, the public, academics, and policy leaders on the perceived benefits, barriers and other issues relating to this integrated ePI healthcare records approach.

Why will the results matter?

This project will give patients clearer and more relevant information about their medicines, helping them to better understand how to take their medicine. By making this information available on a digital platform, patients can access details on potential side effects, medicines they should avoid, and allergies in a more visually engaging way. This may lead to more patients taking their medication properly and result in better patient outcomes, improving trust in the use of anonymised patient data for research.

Another potential benefit could include fewer visits to healthcare professionals. This is due to better-informed patients, reduced hospital visits from incorrect medicine use, and more specific information available to support healthcare professionals during patient appointments.

It is hoped that the results from this project will inform the pathway for wider deployment of personalised ePIs across England.

Further information

This case study has been adapted from the project: Establishing a prototype innovation sandbox where tailored medicines information can be tested in a trusted environment, using de-identified healthcare record data. 

Glossary

Anonymised data: data where personal information has been removed so that individuals cannot be identified. This process ensures privacy and confidentiality, making it safe to use the data for research or analysis without revealing who the data belongs to.

Innovation sandbox: A controlled environment to test new products or services in a controlled, safe way under strict supervision.

Patient information leaflets (PILs): documents provided with medications to inform patients about various aspects of their treatment. They include important information on how to use the medicine safely, potential side effects, and any precautions that should be taken.

Secure Data Environment: a controlled and online platform where de-identified patient health records can be safely stored, accessed, and analysed.