3 ways to make 2024 the year of the patient

By Steve Rosenberg

Chief Executive Officer 

Featured In: Pharmaphorum, December 2023

Clinical research is never just about the next year; it’s always about the next several years. But one thing remains constant: the patient has always been, and always will be, the most important constituent in clinical research.

I’ve been preaching for decades that our industry needs to treat patients like the heroes they are for making a sacrifice in time and body and effort, often when they are facing serious health issues.

Change comes slowly to our industry, and rightly so. When you’re putting experimental drugs in human beings, you’d better not change too much too fast. You’d better care about safety and efficacy.

Although it’s taking time for pharma to recognise and adapt to a truly patient-first mindset, in 2024 patient centricity will have an increasing impact on the way pharma designs and conducts trials. This evolution will create significant improvements in research if we focus on 3 key areas:

1. Involve patients in trial design and development

Historically, and largely still, pharma thinks of patient centricity in terms of making sure the patient has a ride, and someone to greet them, and a blanket.

While the patient’s physical comfort is important, what they actually want is so much more than that. They want input into how trials are designed from the start – not to be retrofitted into a protocol that had little or no guidance from patients who will be asked to take part. They want technology that makes it easier to participate, and information before, during, and after the trial.

Why do I think next year we’ll see patient’s requests for influence grow? Because, thanks to widespread and highly organised patient advocacy groups, pharma is starting to listen and think in earnest about everything the patient needs.

It will take time for pharma to be able to react to and anticipate those needs, and to fully recognise what’s going on with patients. But sponsors and CROs know patients’ voices are only going to get louder and stronger.

The good news is that, as patients continue expanding their influence on the design of protocols and the conduct of clinical trials, sponsors and CROS are learning how much smoother, faster, and less expensive it is to run a trial when they give patient advocates a stronger voice.

2. Address patients’ increasing technology expectations

Just as most of us reach for our phones to do almost anything, patients are asking for the same level of consumer-grade technology at their fingertips to take part in research.

It’s not enough to put a paper form on a smartphone or tablet and expect patients to fill it out. We have to take it a step further and look at what the patient needs to stay engaged.

For that to happen, pharma is waking up to the fact that they have to rethink how they put technology in patient’s hands.

Next year and in the years to come, pharma will continue to gain a growing appreciation for how much more compliant patients become when they can use appealing apps that are akin to those they use in daily life. This is especially important in real-world studies where compliance rates hover at 50% and the site is not there to drive compliance.

In addition to consumer-grade apps, we’ll also see an increase in technology customisation. eClinical technology companies and sites will start paying more attention to what’s happening in the day-to-day lives of patients and bring those findings to sponsors and CROs.

I also believe next year our industry will do more to make the site’s life a bit easier. As patients have more and more technology at their disposal, the burden of provisioning and supporting that technology will fall to the sites, who have to make everyone happy – sponsors, CROs, patients, and regulators.

3. Eliminate silos

There is a growing understanding of the need to remove the silos that exist between being a patient, and being able to access your Electronic Medical Record.

Sponsors and CROs can keep patients for the duration by keeping them better informed. This means not only sharing their data with them throughout the trial, but also returning it to them at the end, so they continue to get the care they need.

It’s not up to eClinical technology providers to decide if patients can see their data. But we certainly can move the needle forwards by giving our customers the evidence that engaged patients stay compliant.

It’s why I’m encouraged by Pfizer’s admirable and progressive decision to begin returning patients’ data to them starting in July 2024. When the world’s biggest pharma company signals its recognition that the patient is going to be more in charge, and needs more to become an active stakeholder in clinical research, the entire industry takes notice.

We’re seeing the growing strength and influence of patient advocacy groups; better patient data collection apps on the latest smartphones; and a new level of patient engagement from the top pharma company, and from TransCelerate, with their Study Participant Feedback Questionnaire Toolkit.

As these elements come together, we’ll see the patient wield much more, and much more positive, influence on clinical research. It’s why, in true partnership with patients, I’m optimistic we can label 2024 The Year of the Patient – and finally deliver.