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The pharma industry claims to be patient-centric, but, asks Claus Møldrup, how can this be the case if the evolving user experience isn’t always at the forefront of the industry's mind and informing decisions?
“Unfortunately, that product no longer has our focus commercially.” This is a common position taken by many pharmaceutical companies on any number of therapies. This exact phrase was said by one pharmaceutical executive to me recently about a drug that had over 820 reviews on our site. While the company making the drug wasn’t focusing on it anymore, lots of patients were still taking it and wanted to have their voices heard.
Unfortunately for patients, companies that make the drugs they take regularly are often uninterested in that particular treatment if it is old and out of patent. Instead, focus is cantered on the newest — more profitable — therapies. This is what we call the 90/10 issue. Across the pharma industry, organizations focus on only at maximum 10% of products currently on the market, with the remaining 90% receiving very little attention.
Within the industry, old and generic products simply don’t warrant a budget anymore. The shiny new introductions and the up-and-coming products steal the limelight and therefore the ongoing needs of those being prescribed older medications, get lost due to lack of commercial focus.
Despite the industry’s laser focus, 81% of all drugs prescribed in NHS primary care in the UK are generic.1 This demonstrates the deep disconnect between the pharma industry, those prescribing the medication and the needs of the patient. The clinical trial process is carried out to ascertain several things before a drug is released to market. They look at whether the treatment works; does it perform better than other treatments and are there are any side effects. Following this there is little done to monitor patient experience and adapt accordingly.
2 The use of this data helps to speed up the drug development process by making data-gathering in clinical trials more efficient and therefore more profitable. Despite this, the industry has not yet recognized the value of collecting real world patient data to unlock how these medicines work beyond the confines of clinical trials and the potential benefits this could bring to not only patients and the industry.
From the perspective of those taking medication currently on the market, this is a serious issue. The pharmaceutical industry claims to be patient-centric, but how can this be the case if the evolving user experience isn’t always at the forefront of the industry’s mind and informing decisions?
In this digital age, there is increased access to information which is empowering the average person in a variety of ways. In particular, consumers now possess a greater ability to influence change and improve products and services directly from their fingertips. Review platforms such as Trustpilot garner more than one million business, product and service reviews each month from consumers across the globe who want to have their say.
According to Bright Local, 85% of consumers consider any review older than three months to be irrelevant.3 Based on this principle, although valuable from a regulatory perspective, any clinical trial responses gained before a drug goes to market, is not considered a valid benchmark for quality by patients using the drug.
In most other industries, old products are replaced or phased out when new ones arrive. Looking at fashion, technology, or even the automotive industry, we can see that these companies keep their focus on the current products in the market, the ones impacting their consumers, actively listening to learn, adapt and improve.
This is not the case for the pharma industry, where old products can stay on the market for a long time, in some cases 50–60 years. The impact of not listening to a patient experience is considerably more serious than that of the next generation of Apple iPhone, so the question remains, why aren’t there more mechanisms for gathering real-world data?
A feedback process for patient experiences with medication on the market, fed directly to the companies producing them, does not currently exist. Presently, if there were any issues, they tend to be taken up with a physician who will then recommend a new course of action. The feedback would stop there.
Recent research from DrugsDisclosed.com of 3,346 Nordic and UK users of prescription and over the counter medications found that:
It’s clear from these findings that patients understand the influential role pharmaceutical companies are playing in developing the medication they are taking. A few focus groups and a patient relations department are no longer enough. There is a trust deficit occurring between patient and pharma, and this could be rectified by addressing the fact that patients want to open this dialogue directly and be able to give feedback on their medication experiences.
The ramifications of not developing a real-world listening mechanism are significant. Billions are spent in the clinical trial stages of drug development.4 Yet, once on the market after a few years, their impact is not tracked or monitored.
Patients are the key to unlocking how these medicines work beyond the confines of clinical trials. Pharma needs to listen to what patients disclose about their medicine, earning patient trust while gaining new and important insights from the true experts on medicine — the patients. This can provide producers and developers of medication the opportunity to improve their business operations by understanding which products are working best for patients and allowing them to allocate their resources accordingly.
We shouldn’t underestimate the positive effects of patients who feel listened to. Patients feel that they have a level of control over their own care, and researchers have a vitally important source of evidence. Pharmaceutical innovation should always start with the patient. More needs to be done to rectify the 90/10 issue, putting patient voices at the forefront of the industry focus.
Claus Møldrup is co-founder of DrugsDisclosed.com.