Pharma, Stop Flummoxing Patients
Efforts to empower patients are undermined by bamboozling medical information. Is there a straight-forward solution?
“If you can’t explain it to a six-year old, you don’t understand it yourself."
This is just one of the many aphorisms attributed to the preeminent physicist Albert Einstein.
And this maxim is something pharma companies would be wise to heed as they design their patient information, literature and materials. Despite the industry’s critical role as an information provider, one of the most commonplace grievances amongst patients is that health information is dizzyingly technical.
How can pharma make complex medical information less intimidating and inaccessible and more engaging and insightful for the patient?
Pharma is acutely aware of the rise of the informed patient, but have they mistaken this for universal health literacy? The data shows that this is not the case; a 2015 study of eight European countries found 12% of respondents showed insufficient health literacy and almost one in two had “limited” (insufficient or problematic) health literacy.
The importance of health literacy cannot be understated, says Trishna Bharadia, patient advocate, international speaker and charity ambassador. “Health information is a major component of the healthcare journey – it affects your interaction with HCPs, your access to medicines; there are various points in that journey that can make a huge impact on what the eventual outcome is.”
Health literacy is a very complex topic, and can vary according to socio-economic levels, education and access to healthcare, says Sheila Khawaja, Vice Chair of The World Alliance of Pituitary Organizations (WAPO). “When you are first diagnosed, you are overwhelmed with information and medical visits. It can get very challenging for the average layperson. This is where education levels can make a difference.”
She has come across many examples of poor communication from pharma to patients.
“Patient information on pharma websites is sometimes not intuitive and when it is, it may be too generic or incomplete. Legal documentation can also be too long and too technical. It should be max two pages, of just the main points and should include a reference person who patients can refer to when doubts or questions arise.”
According to Bharadia, in an ideal world, all patients would have a high level of health literacy. “It’s more important nowadays that they have a high level of health literacy because of the vast amounts of information out there – some of it is complete rubbish, some of it is very valuable but not understandable, and then you’ve got a small amount of information which is relevant to them.
If you are a health literate patient, then you are going to know how to filter things, if you’re not, you are going to absorb all of that information but only a small amount is going to be useful.
It shouldn’t just be the domain of the expert patients, it should be that every person who goes to the doctor has a certain level of health literacy whereby even if they don’t necessarily know where to go, they have the ability to find out where they can get reliable information.”
Khawaja agrees that finding reliable and trustworthy information is a major challenge for patients.
“Nowadays, with technology at our fingertips it is very simple to search for information on the Internet: patients need to know where they can find reliable information, that is explained quickly and simply.”
When it comes to solutions, Bharadia suggests a team approach from the wider pharma industry. She believes there needs to be a broad consensus on what’s appropriate when it comes to the language and tone of health information for patients.
“There’s no point in just a couple of companies saying this is what we are going to do, there needs to be that consensus because that’s how we get a wider change in the industry.”
She notes that pharma also faces barriers when it comes to creating patient guidance and information; “It needs to be easier for companies to engage with patients in order to produce the right kind of literature and information. If that means looking at the regulatory guidelines on how pharma can engage with patients then I think that systemic change also needs to happen. Pharma needs to collaborate with all the stakeholders to make sure that that end result is accessible understandable information that a patient can use in an effective way.”
Khawaja agrees that co-creation with patients is the way forward when it comes to improved health information from pharma. She accepts that the industry is “showing great interest” in delivering better patient communications and has already begun to work with expert patients. Indeed, she sees patient organizations acting as “moderators” between both worlds.
Pharma needs to work with patient organizations and conduct a needs assessment survey to ascertain the best way to help patients understand, she says. “They must also involve HCPs and GPs, as the first point of contact for patients, their views are critical. Pharma must also bear in mind the age group, culture, health literacy levels, education, and socio-economic situation of their target patient group.”
She suggests that industry consider novel or alternative ways of delivering their messages, such as video pills, gamification, or cartoon strips. “I'm all for technology and social media – and this works not only regionally but globally. Video pills keep concepts short and it is easier to remember a visual and storyline than text.”
She nonetheless echoes Bharadia when it comes to understandability and accessibility. “Social media and pharma don't go well hand in hand, for obvious legal and regulatory reasons, but the first starting point should be their website. If you have a product that is not functioning well, you hope you will find additional info on the brand website. The same is valid for the pharma industry. That is the starting point for many patients. The information not only needs to be patient-friendly, it should be easy to find – and not hidden under many sub menu sections. I get so frustrated,” she says.
Explore the big issues driving the patient conversation at our Patient Summit Europe 2018 event in October.