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.
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.
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.
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.
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.
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.
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.
The top responses to this question are:
Quite understandably the main ones are:
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.
More information about the eLeaflet solution from myHealthbox is available on the eLeaflet website