‘Trustpilot’ for medicines: can DrugsDiscovered help pharma be patient centric?

As consumers, individuals have the ability to hold many industries to account through reviews. Platforms such as Trustpilot, TripAdvisor and Google Reviews – as well as internal company feedback functions, which Amazon pioneered in 1995 - have become very important in our consumerist society. Studies have shown that an overwhelming majority of people – 93% according to a Podium study – relied on previous customer’s reviews when deciding whether or not to purchase a product or service. 

Despite the adverse effects of medicines being more life and death than a bad meal, insufficient broadband or a disappointing hotel room, the pharma industry has not been reviewed in the same way as other industries. 

However, Danish-headquartered medicine management app DrugStars wants to change this. The apps' founder and CEO Claus Møldrup explains that, since its launch in 2016, DrugStars has been collecting the reviews and opinions of patients about their medicines. Now the company has anonymised and collated almost 400,000 reviews and more than 55 million data points into a platform for the pharma industry, known as DrugDiscovered. 

Pharma can then leverage this huge quantity of data and insight about their products, categorised based on dosage and target indication, to find out how patients are coping with the medication and if there are any serious side effects. Knowing the issues facing patients in the real world will support pharma in responding to correct these problems by improving the quality of both existing drugs and future drugs in development.

Møldrup believes that the pharma industry, unfortunately, has avoided listening to patients and says there is a significant “trust deficit” between companies and patients.

Although pharma’s reputation has soared in the Covid-19 pandemic, this is from a very low level where it is often ranked close to the bottom of industry categories. For instance, a 2019 US Gallup poll ranked pharma bottom of 25 industries with a score of -31; government came in second to last with a score of -27. This was largely because of high drug prices, extensive political lobbying and the role the industry played in the opioid crisis. 

Similar results were found in a survey carried out by DrugsDisclosed – the patient-focused sister platform to DrugsDiscovered. The study found that 72% of patients felt ignored by the pharma companies and 81% felt that pharma companies influenced prescription decisions.

As a result, the pharma industry has tried to embrace patient centricity; however, Møldrup argues that so far this has largely been rhetoric, “in reality they are not very patient centric”. He added in a statement: “Until now, there has been no way for patients to speak out and no mechanism for the industry to listen and learn. If medicine is to work effectively for everyone, this must change.” 

This is largely linked to the way that the pharma and healthcare industry is structured. Despite being the end user and having important insights into how company’s drugs work in the real world, patients are not the decision makers. Instead, the primary customers of the pharma industry are the physician, specialists and governments or payers, explains Møldrup. 

In addition, Møldrup adds, there is some internal reluctance from within pharma to engage with patients. Although those working on drug discovery and development might want to talk to patients, because of pharmacovigilance concerns and fear about doing wrong by patients, they are not allowed to look at patient organisation websites or conduct polls with patients. 

Instead, according to Møldrup, they have buried their heads in the sand and tried to ignore any problems associated with their medicines. 

The aim of DrugsDiscovered is to allow companies to turn their rhetoric around patient centricity into a reality. 

The platform allows pharma companies to listen to the views of hundreds of thousands of patients in one place. The anonymised insights on the platform come from the DrugStars app where patients are asked nine questions about their experience with their medicines, including how bothered they are by the side effects, what difficulties does taking the medicine poses and whether the benefits of the medicines outweigh the negatives. 

These are questions that patients are not normally asked. Møldrup notes that an employee at DrugStars with epilepsy noted that no-one had every really asked these types of questions before; “doctors always ask how you are doing in terms of your disease, not your medication”. 

These insights are then shared with pharma companies in a legally secure and compliant environment; Møldrup notes that because DrugsDiscovered is “regarded as secondary market research, there are no pharmacovigilance issues”. In fact, DrugsDiscovered already has nine pharma companies on board, according to Møldrup.

Pharma companies can then use these insights to re-build their reputations by proving they are listening to patients and actively dealing with any issues associated with their medicines. 

If a large number of patients are reporting issues associated with a particular drug, this is worrying for a company’s reputation and it needs to find a way to rectify this. In the same way that if a restaurant receives 500 bad reviews on TripAdvisor, it will need to make changes, maybe to its menu or front-of-house staff, to prevent a future downturn in custom. 

In addition, because DrugsDiscovered can be used to look at patient reviews across a whole disease area, as well as specific medicines, pharma companies can use the platform to see how their drugs measure up against their competitors.

Møldrup adds the platform could also inform future drug development as pharma can see clearly which side effects or administration methods are most troublesome to patients in existing drugs or disease areas. 

A major driver in encouraging more companies to become genuinely patient centric with the help of DrugsDiscovered will be the payers and governments, according to Møldrup. This is because these groups are focused on value for money when negotiating drug prices. 

They are not going to be keen to pay premium prices in the long-term for drugs that perform less well than their competitors in the real world. Therefore, it is in a company’s interest to focus on ensuring they are prioritising patients experiences and avoiding negative reviews when launching drugs on the market. 

Patients are highly motivated to engage with the pharma industry about their experiences with medicines, now the pharma industry has access to these insights it can listen and respond to issues benefiting patients globally. Patient and DrugsDisclosed user Colin Failes concluded in a statement: “If we can start to use our daily experiences in a useful way that can make the drugs work better for everyone, we can really help people that are already suffering.”