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Is it time to reimagine patient information?

New report shows that patients are turning to alternative sources for medicines information as only 32% of respondents fully understand their medicine’s label.

In partnership with Kent Surrey Sussex Academic Health Science Network (KSS AHSN), the UK National Innovation Centre for Ageing (NICA) and VOICE, we helped to co-fund and co-design a report to better understand what patients and healthcare providers want and need from the written information for prescription medicines.

The report, ‘One Size Doesn’t Fit All: reimagining medicines information for patients’ highlights that there is an opportunity to modernise and improve access and understanding of the patient information leaflet (PIL) that comes with all medicines.

The survey of 2,897 patients in England, commissioned as part of the report, found only 32% of patients (n=743) who responded say they completely understand the information provided in the PIL and over half of patients who responded report issues with readability (55%, n=1,124). Online sources and guidance from healthcare professionals (HCPs) are the most popular ways that patients find out information about their medicines. Most patients who responded (77%; n=1,857) report visiting online sources and 71% who responded seek further support from their HCPs (n=1,725). In contrast, only 13% (n=304) of patients responding to the largely online survey say they refer to paper-based sources to better understand their medicines. However, HCPs interviewed as part of the report express concerns about the time they have available to properly provide patients with all the information they need about their medicines.

“The report indicates significant improvement is needed so that patients in the UK can easily access and understand high quality information about their prescription medicines, regardless of their background. Real change can be achieved through collaboration across the system, but we must design solutions in partnership with a diverse range of people living with health conditions, and not just a small number of people who are easily heard. I believe the innovative medicines labelling of the future will improve accessibility and will enable people to thrive, despite the burden of a medical condition.”

Des Holden, Chief Executive Officer of KSS AHSN

“Patients must have easily understood information about the medicines they’re prescribed. Not understanding or not reading the patient information leaflet may be a safety issue. We know many people’s health literacy is not good. So, until better levels of health literacy are achieved, it is essential that companies provide information about prescription medicines written in language most people will understand. If patients don’t, or don’t read information about their medicines it is because it’s in a format they find difficult to use or written in a way that means nothing to them, then that patient can’t play an active role in deciding about their treatment or ask the doctor questions. This undermines patient involvement in their care, and that’s not something we should accept.’”

Rachel Power, Chief Executive of the Patients Association

“We need a step change in how we deliver patient information – there is huge and exciting potential to co-design future digital solutions with patients, which are customised to their specific circumstances and better meet complex and changing needs – the people we spoke to as part of this this study were clearly really open to exploring what this might involve.”

Professor Lynne Corner, Deputy Director of the UK's National Innovation Centre for Ageing and Director of VOICE

“We are delighted to be a part of this innovative project and to have the opportunity to co-create solutions with patients, for patients. We look forward to continued partnership to ensure health equity for medicine information in the future.”

Dr Berkeley Phillips, Medical Director, Pfizer UK

Health literacy and digital literacy are major barriers to accessing relevant health information. The next generation of PILs must accommodate the needs of all patients to ensure everyone has timely access to the right information. This may be achieved by co-designing future solutions with patients who have difficulty accessing information or who have particular needs or focusing on a range of digital solutions to improve accessibility.

One Size doesn't Fit All: reimagining medicines information for patients

Published March 2023

Download the full report
PP-UNP-GBR-4278 / March 2023
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