Engaging with Emotions: Patients as Partners

While last week’s Patient as Partners EU conference in London (January 27–28) was primarily focused on patient involvement in designing and executing clinical trials, a number of takeaways and observations are relevant in the wider pharma context, especially for an industry that is increasingly committed-in theory at least-to the concept of patient centricity.

The patient-involvement obstacles faced by those designing and conducting clinical trials, of course, pre-empt or echo the practical, ethical, and logistical challenges that other sectors of the industry must tackle in realizing a truly patient-centric culture. At present, it was pointed out, more than 80% of clinical trials experience delays of one to six months and a mere 10% of trials are completed on time. What’s more, 48% of clinical trial sites “underperform,” failing to deliver the number of patients expected; and, although it varies by therapeutic area, on average, only half of all patients screened complete clinical trials. Engaging patients in clinical trial design could help to alleviate some of these problems, leading to improvements, for example, in study design, participant recruitment, participant retention, protocol adherence, and facilitating a better participant experience.

This is all well and good, but the presence at the conference of many patients themselves, some with very debilitating conditions, served to underline a disconnect between the industry’s noble intentions and the current reality. The patients in attendance took a strident tone when it came to airing their grievances. “When it comes to trials, are you doing them with us or for us?” was one patient’s question. “When designing a trial, the designers think of ‘us and them,’” said another. “That decision at the beginning informs the journey subsequently.” There was more: “Things are baked into studies that don’t address practicalities;” “Trial design focuses on limitations rather than possibilities;” and “We always hear that changes are five or 10 years into the future-we need these changes now.”

Some of these changes come down to simple ways of phrasing a question or request to the patient. “Some people respond to ‘Take your medicine’; others would prefer, ‘Its time to take your medicine,’” observed Dumitru Drumea. More significant strains on the patient involve travel to the clinical site-in the US, 70% of patients live at least two hours away from their nearest study center-and the ongoing impact of their treatment on their families.

These are emotional aspects of course, and emotions can be difficult to reconcile with the some of the cold practicalities of healthcare. In terms of decentralized trials (aka home, virtual, remote, or site-less trials), for example, there is the not inconsiderable issue of safety to consider. But, as many of the speakers emphasized, a patient’s emotional wellbeing is a significant factor in their treatment, and this of course extends way beyond the clinical trial space.

“I have tried to bring patients and their carers into the office,” noted Liz Clark, VP of medical affairs at Norgine. “There isn’t one ‘average’ patient,” she continued. “We have to represent people with diseases, rather than ‘patients’ as an amorphous thing.” Takeda’s senior director and head of global strategic patient services, Lu Zheng, Ph.D., explained, “Clinical teams have been very focused on measurable data. But patients are human; they’re not living in a vacuum. We need to understand not just the patients’ physical pain but any emotional pain they might be feeling.” Highlighting the importance of ethnography over questionnaires and focus groups, Jeremy Sayers, managing director of Origins Insights, a company engaged in qualitative work on the patient experience, added, “There’s nothing like seeing into the eyes of the patients themselves and speaking to them in their own environment.” 

Things are beginning to change, but slowly. “We are at the very beginning of this journey,” said Zheng. When it comes to changing a culture, “the industry is not a small speedboat,” commented Daniel De Schryver, patient engagement and advocacy lead at Janssen. “We’re talking about moving a tanker.”