Patient-led Clinical Trials

May 8, 2017 - May 9, 2017, London

Where patients and pharma join forces to deliver empowered trials

Communicate Your Way to a Better Patient Experience

Making patients feel part of the team during a clinical trial can transform the trial experience for the better

Delivering a more engaging and rewarding experience for patients taking part in a clinical trial will speed recruitment, lower dropout rates, increase participation in subsequent trials and, best of all, produce higher-quality patient data. But, how do you deliver a better patient trial experience?

An often-overlooked factor is basic communication, says Helen Matthews, COO of The Cure Parkinson’s Trust. “Clinical trial participation is no small deal, particularly if you’re living with Parkinson’s with impaired mobility where even getting to the clinic can be a major challenge. Patients can be asked to come off their medications for a period so that clinicians can do an assessment of them in an ‘off state’. But being off medication is a massive challenge for Parkinson’s patients because their ability to function, move and think clearly can be compromised. It’s a big ask to invite people to be part of a trial.”

Yet, a trial can also be a “massively positive experience”, adds Matthews. “As an organization, we have been pushing for better communication between the clinician and the participant in the trial. It comes down to making everyone feel that they are part of the same team – when you get a strong sense of teamwork and collaboration, then some of the challenges of the trial become less daunting. Understanding the ‘why?’ is a real motivator – if you know why you’re doing something, if it’s been clearly explained, then you understand why it’s important. It makes patients feel part of something important and exciting.”

Inform, motivate, support

Co-designing trials with patients and seeking insight to ensure they deliver outcomes that really matter to patients is crucial, says Cathy Emmas, Patient Centricity Partnership Director at AstraZeneca. “We also need to ensure the design has as few barriers to patient participation as possible; so rather than just relying on site staff, we also ask patients themselves where the barriers are and what would make it easier for them to join a study and remain engaged. We have a couple of ways we are already doing that – firstly, by running a simulation of the study with patients at an investigator site, we can observe the patient’s experience of the study visit and get direct, in-depth feedback on the study procedures and patient materials. Secondly, we can get insight from a larger number of patients across a wider geography via surveys of online communities such as PatientsLikeMe. We use structured questions to understand the likely impact of certain aspects of the study on willingness to participate, but we also give patients the opportunity to share with us their own suggestions for changes that would make the study work better for them. These can, sometimes, be things that seem quite minor to the study team but could make a big difference to a patient’s ability to join a study and improve their trial experience. Sharing the results of such surveys is essential in building long-term partnerships with patients and communities. We commit to share not only the findings of the surveys with participants but also the changes we’ve made as a result. It’s an important part of our relationship with the patient that they see the impact of their input. This is not a one-off transaction; this is an ongoing partnership and we believe that the more we share with patients, and show how their insight and experience is valued, the more patients will be encouraged to help us design and deliver meaningful studies that patients want to join,” says Emmas.

Early and ongoing contact

For Matthews, the earlier patients get involved in drug development the better. “They are the experts and their experience of a disease will be entirely different from what a clinician sees. Their priorities are too often overlooked, in terms of the outcomes people are looking for. For example, for a group of people who have a type of Parkinson’s where chronic fatigue is the prevalent symptom rather than tremor, a tremor outcome hardly seems relevant. If you involve people early enough, you can identify the right cohort to take part.”

Patients need clarity in order to fully understand the benefits and risks of trial participation. “In a survey back in 2012, we identified barriers for clinicians and for patients. There were a lot of misconceptions and concerns around placebo and coming off medication, and it came back to clear communication, of spelling out the risks and benefits. Too often, patient information leaflets are long and burdensome and fail to explain why this piece of research is important in the wider research context. If you know why you’re doing something and it’s been clearly explained, suddenly you understand why it’s important,” says Matthews.

With trials running over several months, the key is respect and keeping people engaged, she says. “Approach it from the perspective of the patient; they are giving up their time and want updates, they want to know if the trial is recruited or has been delayed, and they want to hear about other things that are happening of interest to them in the center they’re attending.”

Potential patients have also been missed when their enquiry was not followed up. “It’s a disaster because you lose that person to research. It’s a very brave thing to put yourself forward, and even if they are not right for that particular study, they can get involved in other ways. It’s about protecting that enthusiasm and making sure people stay engaged. We developed a clinical trials charter that clarifies expectations for clinicians and patients alike, and ongoing patient communication featured heavily,” she says.

For Matthews, there’s every reason to be optimistic. “One of the reasons we formed the Cure Parkinson’s Trust 11 years ago was because industry was leaving in droves. We were still dealing with the same family of medications that were introduced 50 years ago, and it was a real concern, so it is so encouraging to see the number of companies now coming in with innovative ideas around new treatments. What’s more, they’re starting to communicate with patients in the right way on how to develop those treatments. We’re certainly in a different environment now and it’s very encouraging to see that.”

Cathy Emmas will be speaking at Patient-Led Clinical Trials . For more information, visit

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Patient-led Clinical Trials

May 8, 2017 - May 9, 2017, London

Where patients and pharma join forces to deliver empowered trials