A patients survey on the use of the information leaflet

AFI (the Associazione Farmaceutica Industria) as part of their initiative "my e-Leaflet: the evolution of the Patient Leaflet" looking at the digital evolution of the Patient Leaflet, recently released the results of a survey titled: "What is the value for you as a user of the medicines Patient Information Leaflet ?".

The rationale behind this survey was to identify the key pain points in the usage of the current paper based leaflet so that the digital evolution could address and improve on those points.

The methodology

For this survey a CAWI (Computer Assisted Web Interview) approach was used. This is part of a methodology based on a questionnaire provided to the respondent with a link, in a panel, or a website. It’s considered the most economical way to collect survey data, because you don’t need interviewers, devices or extra tools. For all these reasons web surveys, also called online questionnaires, are one of the most common methods to collect information. When you’re opting for CAWI, all the attention is on the questionnaire design because the response rate is directly linked to the quality of the questionnaire itself.

The respondent user group

Unfortunately the number of responders for this survey was not very big, just 1183 answers, which is indeed a small number to infer any generic behaviours but it is still useful to gather insights into the perception of this information distribution tool and its digital evolution. The age and gender distribution was quite good but unfortunately no information was provided in terms of geographic distribution within Italy nor other demographic attributes like education level, country of origin, primary language, etc.

The responses

Let's now look in detail at some of the questions and answers fro this survey and how they relate to previous surveys, data coming from the market and the manufacturers. We are also integrating some of the real-world data available through Medstrends a data analytics tools developed by myHealthbox to look at data on the usage of its search engine on medicines information.

Q1 - "How often do you read the patient leaflet of the medicines prescribed to you" ?

The responses here are quite interesting as it seems that 8 out of 10 people read the instructions and over 50% always read them. This is very good news and seems that the efforts of the last few years towards improving the readability and the language used is finally paying off.

Q4 - "How would you improve the patient leaflet" ?

While most of the responders agree that an improvement is needed when looking at the "how" the audience is evenly split into 2 large groups: one group requesting a graphical improvement the other looking at making is easier to read with the use of more approachable language and more concise text.

The lack of flexibility in the design of a modern template to navigate the textual information, the legal requirements from the Drug Agencies in terms of what information must be provided, the reduced amount of space available all contribute to make a paper leaflet difficult to navigate and read so the results of the survey are not really surprising. For example the use of diagrams would be perfect to lead the patient to the correct information while at the same time making the UI interaction more pleasant. This is confirmed by some of the answers in the survey that point to improved graphics, larger text and the use of symbols and drawings as the main area for improvement.

Q5 - "Would you like if together with the paper leaflet information was available in digital format via a web site or a dedicated app." ?

Here the survey steers towards a more digital approach and the answers confirm that patients are fully aware of the potential of digital tools in this area. 80% of answers agree that a digital tool alongside the paper leaflet would be useful, 45% of these declare a high interest towards this tool.

Q6 - "What information or functionality would you like to see on this website or app."

The top responses to this question are:

1. Personalized information (96%). To answer this need for example the eLeaflet already provides a way to create a personalized dosage schedule or calculate the perfect dosage according to personal parameters input by the patient.
2. Quick search through the text using keywords (96%). myHealthbox is one of the few platforms where all the content of the PIL and SmPC documents has been fully indexed thus allowing full text searches on the whole text (not just on product name), "homeopathic remedy for asthma", "contraindications on the use of paracetamol" are just examples of the available queries.
3. Use of video instruction (64%). The eLeaflet by myHealthbox already allows full multimedia support (audio and video) with customers opting for video instructions in cases of complex medical devices (i.e. insulin pens) or implementing an audio leaflet for products for the elderly or for patients with reduced eye sight.
4. Instructions in multiple languages (35%). Here we were expecting much higher numbers but it is difficult to have a complete understanding of the answers without knowing the full demographics of the responders. Native Italian speakers would most likely show little interest towards having other languages available while foreigners would probably show a very different disposition. With over 5 million customers in Italy with a primary language which is not Italian there is in fact a huge marketing opportunity for those companies that want to break the language barrier.
5. Reminders (81%). This is just one aspect of the level of personalization that could be implemented with the adoption of an eLeaflet solution.

Q7 - "What characteristics would you like to see on this website or app."

Quite understandably the main ones are:

• ease of use
• trustworthiness of the source
• compliance with privacy regulations.

The last question from the survey asked if the respondent would agree on removing the paper leaflet if a web site or app. was available to provide the same or better information, only 22% were in favour but in our opinion it is difficult to decide on replacing an established solution without a clear understanding of the alternative.

Very few patients (but the numbers are growing) have had the opportunity to actually try the digital leaflet so it is totally reasonable that their answers reflect this lack of use and knowledge. Like most digital solutions that replace and improve paper-based technologies the attitude changes quickly and dramatically once users /patients have had the opportunity to experiment with the new solutions.