Only a third of patients fully understand the Patient Information Leaflet (PIL) provided with their medicine, while less than half usually read it, according to a new survey.

Pharmacists can help by supporting any pilots that test new ways of communicating medicines information with patients, the researchers told The Pharmacist.

The survey also highlighted the important role pharmacists could play in giving advice to patients, with nearly three-quarters of patients saying that they spoke to healthcare professionals to get information about their medicines.

To help healthcare professionals ‘work smarter’ not harder, researchers proposed a ‘digital-first’ approach to medicines information that took care not to exclude those without access to technology.

The report, authored by Kent Surrey Sussex Academic Health Science Network (KSS AHSN), UK National Innovation Centre for Ageing (NICA), VOICE and Pfizer UK, complied over 3,000 responses from patients and clinicians to understand how PILs are currently used.

It found that just 32% of patients surveyed said that they completely understand the PIL, while just 47% said that they always or often read it.

Many patients reported anxiety from reading about potential side effects, and several said they assumed that their GP or pharmacist would tell them about anything important.

Less than 10% said they read the PIL when they received their repeat prescription, meaning that they were likely to miss out on any updates to their medicine’s safety information.

Most patients (93%) would read the PIL when the medication was first prescribed, 75% would read it if they were to experience any side effects, and 58% would read it if they were prescribed any information about a new condition.

Over half (55%) of patients reported problems with the readability of the PIL, such as the font size and quantity and relevance of the information provided, while 27% said they found it difficult to understand – for example, because it contained technical language. Just 29% said they had no difficulties with the PIL.

The survey suggested that patients are increasingly turning to alternative sources of information about their medicines, including online sources such as Google searches or the BNF and NHS website (77%), healthcare professionals like pharmacists or GPs (71%). Just 13% mentioned paper-based information like the medicine box or PIL.

But the report also highlighted the capacity pressures faced by healthcare professionals who did not always feel like they had time to adequately explain information to patients.

One clinician quoted in the report said: ‘You can’t always be proposing solutions where we’ll get... “the pharmacist [to] do this”.... we’re not living in a world where manpower resource is infinite, in fact, [we are in a] situation in which it’s contracting down.’

Another proposed that ‘whatever solution we come up with, should reduce the requirement for face-to-face inputs, not increase it’.

The report concluded that the focus should be on ‘working smarter’, by giving healthcare professionals tools they can use to provide a better service to patients without needing more staff.

The researchers said that innovative medicines labelling of the future should focus on a digital-first approach, with patients reporting that they wanted audio, video or translation functions, as well as search functions to answer specific queries about side effects, allergies or how to take their medicines.

They also said that patients who take multiple medicines might want to be able to print out a schedule and receive alerts, and that patients with lower health literacy might benefit from simplified language or pictograph options.

However, they emphasised that any solution must be co-designed with patients with specific needs and with those who might have difficulty accessing digital technology.

Pilots could aid understanding of how electronic medicines product information is accessed and understood by both patients and providers in a variety of real-life settings and platforms, they said.

Hinal Patel, a trained pharmacist and medicine optimisation programme manager at KSS AHSN, said: ‘Community or GP based pharmacists can help by really getting behind any pilots and supporting the trial of them out so that [a] wide range of professionals as well [as] patients have been involved in testing potential future developments.’

The researchers also said that appropriate training should be provided for healthcare professionals to help them identify the health and digital literacy needs of their patients, and could link with Health Education England’s Artificial Intelligence (AI) and Digital Healthcare Technologies Capability framework.

In September Ghalib Khan, founder of Written Medicines, spoke to The Pharmacist about how he was developing bilingual medication labels to improve patient safety.