Clinical trials – examining the patient experience

Introduction

Clinical research is essential in helping us find out if new therapies really do work and if they can make a difference to patients’ lives.

But with over 300,000 trials looking for around 44 million patients, conducting clinical research is becoming increasingly difficult. We know there are patients out there, often searching desperately for new options or alternatives that they haven’t already tried.

So why is it a struggle for clinical trials to reach them?

This was the question explored at an event organised by Havas Lynx Group as part of their Patient-Centricity on Trial initiative, where a panel of patients, caregivers, healthcare professionals and industry experts discussed both the patients’ and the clinician’s clinical trial experience.

Getting the timing right

In many cases the first exposure patients have to clinical trials is when they are ill – possibly having just been diagnosed with a new condition. When recruiting for oncology trials, Nicola Froud found that presenting people with information about clinical trials at this point could be overwhelming:

“It’s a minefield, and they don’t know what to make of it. And then put in front of them is all this information that they don’t really understand. It’s a lot to take in.”

This may be in part down to the way this information is delivered. Typically, doctors and nurses are responsible for finding prospective patients for clinical trials – not an easy feat when you are time-poor and trying to run a clinic. This was Tapas Mukherjee’s experience as a respiratory specialist: “People relied on me to tell patients about the trials. The person you see might not be suitable – they might be pregnant or a smoker – so the chances of me being able to find someone is really slim. The thing that I often heard from patients was ‘I don’t want to be a Guinea pig.’”

Addressing misconceptions

Mark Evans believes that awareness of clinical trials is a major problem when it comes to finding people willing to take part.

By making clinical trials part of a broader conversation about health and wellness – rather than something that we only talk about when we are sick – we can have more open conversations and start to build trust with prospective participants and their families.

To build this trust we need to ensure we are not bombarding people with dull, dry information – or worse, not communicating with them at all. When we fail to communicate with patients enrolled on trials, it creates a very one-sided situation, something Professor Andrew Biankin sees as a value disconnect: “Patients and participants are the most important people within the trial, but they feel as though their data is being harvested. They have lost their value. And there is value. There is the benefit to the community, to your population, and to the people who share your genetic make-up.”

The question then becomes not only how can we make people more aware of clinical trials, but how can we involve them throughout the process, and properly incentivise them to take part?

Bridging the divide

Claire Knapp believes that broader social changes could offer a route forward: “I think there is a lot of appetite to get involved in trials and research. When you look outside of pharma there is a move towards creating a collective benefit and towards altruism. You have this disconnect between people who are hungry to get involved, and not being able to bring people together.”

To bridge that gap, Max Scott-Slade, Co-Founder of Glitchers, created the ground-breaking video game Sea Hero Quest to help fuel dementia research. The game used entertainment to collect data that helps scientists understand spatial navigation. Those participating had the immediate satisfaction of playing the game, but also became part of the community, contributing to and sharing in the results of the research – making the exchange less one-sided.

A sense of community and patient involvement in trials is something that Sammy Ainsworth is working towards at Alder Hey Children’s Hospital and in the surrounding area: “We had parents from quite tough parts of Liverpool, and they were feeling like clinical trials weren’t for them. We now have a strong parent advisory group feeding into how the trials are done.”

Getting back to basics

Sammy’s daughter has also taken part in clinical trials, which brought a different set of challenges. She found that participants and doctors can have different priorities for treatment. Whereas physicians want to avoid the signs and symptoms of disease, participants want to function: they want to pick their kids up, get through a week at work, and make the dinner. These everyday things can be impacted by clinical trial participation, but often get forgotten about.

Mark Evans believes that this is a natural consequence of the way global trials are run: “It can be  a relatively small group of people, making decisions centrally. By listening to the patient’s voice and perspective, small changes can be made that could greatly improve their experience on clinical trials.”

The stories from the panel make it clear that it’s often at the level of basic participant experience where things fall down. As general consumers, we expect a positive customer experience from the companies we engage with. Is it unreasonable for patients giving up their time and taking a chance on clinical trials to expect the same?

By understanding the people involved and by going back to the basics of good communication and customer experience, we can do more than improve access to cutting-edge medicine. We can help clinical trial participants feel like a valued part of the medical advances they are making possible.

Focus Group Attendees

Matt Eagles, Head of Patient Engagement, Havas Lynx Group

Sammy Ainsworth, Youth and Family Participation Officer, Alder Hey Children’s Hospital Clinical Research Foundation (CRF)

Professor Andrew Biankin, Regius Chair of Surgery/Director of Translational Research Centre

Max Scott-Slade, Co-Founder, Glitchers

Vicki Dillon, Patient Advocate and Former Nurse

Tapas Mukherjee, MBChB, MRCP, PGDIP, Associate Medical Director, Havas Lynx Group

Dr Vernon Bainton, MBChB, BMedSci, Chief Medical Officer, Havas Lynx Group

Mark Evans, Managing Director, Havas Lynx Faze

Claire Knapp, Managing Director, Havas Lynx

Nicola Froud, Former Clinical Research Associate