The Patient Summit USA 2019

Oct 2, 2019 - Oct 3, 2019, Philadelphia

Attend this event to get real case studies which are moving the needle and changing the relationship pharma has with its ultimate customer - giving you practical techniques across the value chain (R&D and commercial) on inspiring cultural change, delivering ROI, tackling enrolment problems, boosting adherence and improving health.

Adherence: Through The Eyes Of The Patient

Are pharma and patients speaking the same language when it comes to medication adherence?



It has been well-documented that medication non-adherence is the Achilles heel of the pharma industry. Otherwise efficacious drugs are not having the expected impact on patient outcomes, because patients simply aren’t taking them. Addressing the issue is a major challenge for organisations who have spent millions of pounds devising potential solutions to this perennial problem, with varying results.
 
But what is the patient perspective on adherence? Do they even use this term? And how do they think pharma can help patients take their medication safely and effectively? 
 
Two patient advocates who recently spoke to us say the reasons patients don’t take their medication are many and complex, and not always understood by industry. Patient advocate Matt Eagles has Parkinson’s disease and is an active member of eyeforpharma’s unique Im-patient steering committee. Eagles has been taking medication almost all of his life for various medical issues and he sees a fundamental disconnect between how pharma perceives adherence and how patients do.
 
According to Eagles, discourse around adherence evokes the “paternalistic view that pharma has of patients” and conjures up feelings of guilt in patients. “It’s like pharma telling off a child who has been naughty – ‘you haven’t taken all your medication today’.”
 
According to Eagles, what pharma forgets is that one size does not always fit all – he says patients know their own bodies better than anyone else. 
“You know if you if you are not feeling well with a headache, for example, you take an aspirin or a paracetamol. Admittedly they are not a prescription drug, but you don’t feel guilty not taking one whereas with prescription meds, there is that feeling of guilt.”
 
Elly Aylwin-Foster is another patient advocate, who has lived all her life with cystic fibrosis. She is also a member of the Im-patient committee. While she is well aware of adherence as an issue, she says this is largely due to her work within the healthcare industry as opposed to her personal experience as a patient. She also asserts that patients simply do not use the term in real life.
 
“I might use the term adherence or compliance if I am speaking to my own doctor or other people within the healthcare industry, but I don’t think I have ever used it outside the healthcare industry. In conversations I have with other patients in real life or those I see online, no one uses that word to describe their actions, of course they don’t. “Patients and pharma are speaking a different language.”
 
Many of the solutions pharma has devised for addressing non-adherence are based on the idea that patients simply forget to take their scheduled dose of medication. Eagles maintains that it is far more nuanced than that; although many patients might forget, there are also myriad reasons as to why a patient may simply decide not to take it. He also believes that patients must see tangible benefits of a drug in order to persist with it.
“If a medicine works and helps them, they will take it – in my view there has to be a tangible benefit.”
 
Aylwin-Foster agrees. “I would describe myself as a very adherent patient, I'm happy to take medication and doing everything I can to keep myself healthy. But there are always times when I won’t take a certain medication I have prescribed for a particular reason, and those could be for days, weeks, or even months.”
 
Aylwin-Foster echoes Eagles’ comments when she says that many patients are simply choosing not to take a certain medication because of how it makes them feel – there must be a real benefit, and the side effect profile cannot undermine their quality of life.
 
“Many people with cystic fibrosis may have to take ciprofloxacin, a high strength antibiotic used to treat resistant or difficult bacterial infections. But it’s a medication with a lot of side effects so there are a lot of people who just swear off it and say they will never take it again.
 
“Most patients acknowledge that side effects are sometimes just a fact of life, and if the treatment is working and the side effects are bearable then that’s ok. Sometimes a non-adherent attitude can come from a place of lack of trust but also a fear of whether taking a medication is the right thing for them.”
 
Eagles adds that the same dosage can cause different reactions in different people.
 
“In Parkinson’s if you get too much dopamine in your system the side effects can be worse than the actual Parkinson’s, with the twitching and dyskinesia, so if you are adhering to your tablet regime as given to you by your doctor you could feel awful. Whereas if you know it is time for a dose but you feel fine and think you should delay it, then you will feel better.”
 
Other, more practical issues can also impact adherence, and this is where the patient’s view is so valuable; Eagles explains his problems with tablets that must be cut in half to obtain the correct dose. “They don’t always break exactly in half, and sometimes they degrade so you lose a lot of the medication. Air can also cause tablets to degrade. Pharma needs to think about how they package, dispense, and dose medicines.”
Eagles’ solution to this is a branded pill box, made specifically for a certain type of medication.
 
“Having a pill box that is suitable for the medication, not just one size fits all, would make a huge difference. Why don’t they produce branded pill boxes with instructions on the box?  Medicines come in generic glass bottles or plastic pots, but you need a pill box for out and about. People don’t want to be taking pills if they don’t have to so why not make it as easy as possible? It’s a no-brainer for pharma in terms of encouraging adherence.”
Both Eagles and Aylwin-Foster are adamant that there is a lack of clear information provided by pharma for patients when it comes to taking their medication properly and safely.
 
Attempting to learn more about a medication online can open a can of worms; Aylwin-Foster believes it is incumbent on pharma to provide accurate and accessible information on its medications for its real customers – the patients – as well as combatting the misinformation that can be found by searching Dr Google.
 
“There is a lot of easily accessible information online which can be valuable for patients but there is a negative side, such as conspiracy theories that come up around various types of medication. Pharma has no idea how entrenched the fear can be from reading this kind of stuff and I don’t think the industry has any response to it. I personally can find that quite frustrating when I actually want quite detailed and specific information on a drug, I can’t always find that and I certainly can’t find it from the manufacturer,” she admits.
 
Pharma’s apparent misunderstanding of the adherence issue could be solved by true dialogue between industry and patients, agree both patients.
“There are many different types of patients. If pharma could look more on social channels, they could join the dots and not see patients in isolation,” says Eagles.
 
According to Aylwin-Foster, pharma has got it all wrong by focusing their adherence solutions on reminders or notifications in the form of texts and apps. “Pharma seem to think patients mostly don’t take their medication because they’ve forgotten – they don’t understand that perhaps a patient might want more information or more of a dialogue round how and why they take their medication,” says Aylwin-Foster.
 
“Direct communication between pharma and patients is still quite rare and relatively new. It’s not that it is distrust per se, but there hasn’t been an opportunity for a relationship to form between pharma and curious patients searching for more information.”
 
“Both sides are on the defensive - they need to meet in the middle, there needs to be a compromise. Pharma has to have empathy, because if you can get empathy then you can get solutions,” Eagles asserts. “Pharma needs to move beyond seeing it as a disease state and think of the patient as a person. The origin of the word patient comes from the Latin verb pati ‘to suffer’, but there is no need for patients to suffer unnecessarily.”
 
 

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The Patient Summit USA 2019

Oct 2, 2019 - Oct 3, 2019, Philadelphia

Attend this event to get real case studies which are moving the needle and changing the relationship pharma has with its ultimate customer - giving you practical techniques across the value chain (R&D and commercial) on inspiring cultural change, delivering ROI, tackling enrolment problems, boosting adherence and improving health.

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