Why 72% of patients don’t feel listened to by pharma

Claus Møldrup explores research showing that patients want their voice to be heard more by pharma, and asks what a truly effective feedback loop for medicines might look like.

The democratisation of data opens up improvements to virtually every product and service across virtually every sector — bar one. Pharma remains stubbornly closed to feedback, with potentially damaging consequences for the industry, healthcare systems and patients.

The most obvious iteration of democratisation is the rise of online experience sharing platforms. From highly specific sites such as Trip Advisor to all-encompassing platforms such as Trustpilot, the modern consumer’s voice carries weight. While negative reviews can sink a business, forward-thinking organisations see this accountability as a driver for continuous improvement.

The omission of medicines from the feedback revolution is curious and potentially damaging. Data defines modern therapeutics, but this is almost uniquely confined to the clinical trial stages of drug development. Identifying, recruiting, retaining and monitoring patients during this part of the cycle is estimated to cost pharma US$19 billion a year as companies seek to harvest patient experiences.

Once a drug is licensed and launched, however, there is a deafening silence. Millions of patients are prescribed often complex drugs and are expected to follow equally complicated regimens. While clinical outcomes are of course monitored through healthcare systems, the patient’s experiences, such as the reality of their drug administration and day-to-day effects, are ignored by the very companies that developed — and continue to develop — them.

“As most other sectors have long recognised, if a business isn’t taking part in the conversation then others will fill the void to tell their story instead. That narrative, for many patients, is that pharma companies just don’t care”

Pharma is swimming against the tide and can’t pretend that the democratisation of medicines data doesn’t exist — because it’s already here. As most other sectors have long recognised, if a business isn’t taking part in the conversation then others will fill the void to tell their story instead. It means pharma has lost control of its own narrative – and that narrative, for many patients, is that pharma companies just don’t care.

Research supports this conclusion, showing an alarming lack of patient trust. A 2020 survey from DrugsDisclosed.com of 3,346 users of prescription and over the counter (OTC) medicines from the UK and the Nordics revealed that:

  • more than three-quarters of patients do not trust advice from pharmaceutical companies about their medication;
  • 81% feel the pharmaceutical industry influences prescription decisions; and
  • 72% do not feel listened to by pharmaceutical companies.

These are startling statistics, and this overwhelmingly negative perception must be of concern. Pharma is an industry that should have a hugely positive story to tell as it develops the medicines and treatments that bring benefits to billions of people around the world. Yet it is widely mistrusted.

If pharma companies listened more, they would hear that the users of their medicines often feel confused and alone. In direct opposition to the emerging era of personalised healthcare, medicine information leaflets are one-size-fits-all documents that fail to reflect a patient’s individual circumstances and experiences, and are obligated to list every possible side-effect (which can make them virtually meaningless). In addition, patients have no opportunity whatsoever to feed back or pose questions to the company or — as critically — other users.

As one Crohn’s Disease patient describes in a DrugsDisclosed user case study, “It can be difficult getting useful and reliable information on your medication, and leaflets that come with them can be scary. They have to list all of the possible side effects, even the rarest. It is reassuring to read about other people’s real-life experience… It is important because it is by the people that actually take the medications. It makes me feel less alone.”

Shared experience — the power to improve

There is a better way. Healthcare (as distinct from pharma) has evolved with society and its technologies. Go back just a few decades and patients were passive bystanders to their own healthcare. Medicine took a patrician approach: it knew best and patients should lie still whilst they were poked, prodded and prescribed until they (hopefully) got better. This has changed — and changed for good.

Many healthcare systems are well advanced in listening to patients. In the UK, for example, every NHS hospital has a ‘patient panel’ made up of service users. These panels provide real-time feedback on experiences, from food to hygiene to clinical care, and members often sit on the main hospital Board to ensure that actions are informed by patient insight. This isn’t a PR exercise — it improves hospital environments, focuses decision-making and ultimately benefits clinical outcomes.

We are now seeing this evolve further as a new and distinct discipline emerges, known as Public Engagement (PE). PE isn’t traditional ‘communications’ where organisations talk to try and change patient behaviours, rather it’s about listening to patients to change corporate behaviours.

This evolution is particularly prevalent in emerging medicines, with organisations such as Genomics England and The Wellcome Trust supported by Understanding Patient Data recognising the huge and largely untapped value of patient experience — and that the success of new forms of medicine depends on public understanding, acceptance and consented participation.

The way back

Some of these issues fall out of well-intentioned codes and regulations to protect patients, but this can no longer be cited as an excuse for pharma’s continuing lack of engagement with its ultimate end users.

Technologies — specifically a sophisticated form of ‘Trustpilot for medicines’ — exist to bridge the gap between pharma and patients responsibly. Using this kind of technology will see significant improvements to healthcare generally and medicines specifically.

Research again backs up this conclusion, with a study that reviewed patients who had used an anonymised — regulatory compliant — medicines feedback app. After two months:

  • 79% experienced an improvement in remembering to take their medications;
  • three quarters experienced an improvement in taking their medications as prescribed;
  • close to half felt they better understood their medications;
  • 69% felt more motivated to take their medications; while
  • more than a third felt the effect of their medication actually improved.

In calling for further research, another study concluded that use of these apps improved clinically relevant indicators of adherence and impact and benefits were related to level of app usage.

Asking patients how they feel about medications can also benefit wider healthcare systems. In the UK, for example, more than half the public expressed an unwillingness to take a vaccine unless it had been tested for at least a year. Further, close to three quarters would be unwilling to allow their children to receive such a vaccine. This is priceless public insight during a pandemic as pharma races to find a COVID-19 vaccine — allowing the industry to better support governments as they prepare populations should a vaccine become available.

Beyond improvements to patient well-being, health outcomes and pandemic response, listening to patients can also improve pharma’s business operations. Understanding, for example, the factors that heighten the risk of poor adherence to medication regimens can lead to solutions designed to mitigate them — and reduce patient drop out. Further, with insight direct from users, pharma companies can optimise their Patient Support Programmes and patient support materials, while they also have access to a continuous, near real-time market research resource made up of hundreds of thousands of highly engaged patients willing to share experiences.

From bad medicine to good

The democratisation of data is here, and it’s here to stay. Pharma’s longstanding reluctance to join the conversation simply isn’t sustainable. The choice is whether the industry engages quickly and willingly or continues to resist and is dragged into the 21st century under duress. The former will go a long way to restore patient trust, while the latter will further undermine it.

Pharma needs to capture deep patient insight into its medications, which it can apply from product development to marketing to patient support. At the same time, this will allow users to feel empowered in helping to shape a medicine environment that reflects, recognises and responds to their daily experiences.

The tragedy is that a continuing failure to join the conversation hurts pharma companies, health systems and millions of medicines users around the world. Now is the time for pharma to join the feedback revolution and turn bad medicine to good.

About the author

Claus Møldrup is co-founder of DrugsDisclosed.com and CEO of DrugStars.