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 a survey of almost 3,000 patients in England, less than half of those who responded (47%; n=1219) say they read the patient information leaflet and over three quarters of patients who responded (77%, n= 1,857) say they look at online sources, including Google and social media to find understandable information about their medicines¹
• Healthcare professionals (HCPs) highlight concerns that patients aren’t receiving or understanding information provided as regulators and manufacturers intended¹
• Authors of the report set out a series of recommendations to improve patient outcomes and call for industry, government, regulators, third sector organisations and academia to come together with NHS patients and HCPs to design and implement change

Worthing and Walton Oaks, 23 March 2023 – Kent Surrey Sussex Academic Health Science Network (KSS AHSN), UK National Innovation Centre for Ageing (NICA), VOICE and Pfizer UK today are calling on stakeholders to update how patients receive information about their prescription medicines in England, as part of a new research report. The report, ‘One Size Doesn’t Fit All: reimagining medicines information for patients’ [https://improvement.kssahsn.net/our-work/meds-op/reimagining-medicines-information/] 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 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 (including pharmacists and prescribers in acute, community and primary care settings) 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.

Commenting on the report, Des Holden, Chief Executive Officer of KSS AHSN said: “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.”

Rachel Power, Chief Executive of the Patients Association said: “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.’”

The report calls for accelerated action across three areas to improve prescription information for patients including 1) a patient-centric approach to medicines information, 2) optimisation of technology and 3) building stronger connection between regulators and policy setters to develop and implement a UK roadmap for electronic product information (ePI).

Professor Lynne Corner, Deputy Director of the UKs National Innovation Centre for Ageing and Director of VOICE, the international citizen network involved in the project said: “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.”

Dr Berkeley Phillips, UK Medical Director, Pfizer said: “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.”

The report findings indicate specific improvements are needed for patients who take more than one medication or for patients who receive repeat prescriptions. Patients and carers of patients, who take more than one medicine, indicate in the survey they can find it challenging to understand the side-effects of all of their medicines, and how these different medicines may interact with one another. Similarly, patients who receive repeat prescriptions may not be up to date with all the latest product information. Only 10% (n=222) of patients who responded say they read their medicines information when they receive a repeat prescription.

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.