Putting Patients on the Programme

This Just In

Patients are an important part of the European Respiratory Society International Congress, and other medical associations are likewise recognizing the value of giving patients a role and voice at their events.

Over the past decade or so, a growing number of medical associations have included patient speakers and representatives on their conference-planning committees. The benefit is a keener insight into the particular medical condition the event covers, leading to conferences that are structured to better reflect the needs of those who live with those conditions. Is this a specific trend for the medical and health-care sectors, or will it spread to other association events?

In the April issue of PCMA’s Convene magazine, Senior Editor Barbara Palmer explores this recent development among medical conferences. She writes about how in 2013, after attending the Stanford Medicine X conference at Stanford University, geriatrician Dr. Leslie Kernisan wrote in a blog post about the most remarkable innovation she encountered at the event. It wasn’t a tech advance or brilliant research breakthrough; it was the high-level involvement by patients.

Kernisan explained how patients told their personal stories on stage and around the tables during meals, and took part in brainstorming health-care solutions and in presenting new technologies. The presence of patients “packed a powerful punch,” Kernisan wrote. “It all kept me feeling engaged and inspired during the event and left me wishing that more academic conferences were like this.”

As Palmer writes, her wish is being granted. The last decade has seen a gradual movement that harnesses the benefits that occur when both health-care professionals and patients play a genuine role at medical meetings. From events like Medicine X, where patient involvement is a core element of the conference, to the European Respiratory Society (ERS) International Congress, which gives patients a smaller but vital role — involving them in conference-planning committees, as speakers, panellists, and meeting participants — patient advocacy at events is a growing trend.

The benefit is such that health-care professionals are actively pushing for patient involvement. Pippa Powell, director of European Lung Foundation (ELF), a patient-centred organisation founded by the European Respiratory Society, organiser of ERS International Congress, told Palmer: “We’re overwhelmed by the questions of ‘Can patients come sit on this board?’ ‘Can patients come and do this?’ ‘Can we make sure there are patients involved in that?’ And that’s not us, that’s us responding to the [healthcare] professionals who want patient involvement.”

The effect is improved understanding at all levels. Exposure to patients at meetings allows health-care professionals to understand the day-to-day lives of patients, Powell said. “I think sometimes they can get lost in the bigger discussions and the more complex issues and forget, at the end of the day what’s most important,” she said. “And sometimes it isn’t what you think. Yes, they want research, and yes, they want progress in their disease area — but they also just want to be able to enjoy their life to the best of its potential.”

Sudip Parikh, senior vice president and managing director, DIA (Drug Information Association), believes patient advocates can inspire health-care scientists to work harder to find solutions, he told Palmer. “Meeting those advocates, it changes your intensity level, it changes your pace of research. You’re just not looking at molecules and trying to fix the molecule, you’re looking at people and you’re saying, ‘If I can fix this molecule, I can do something for this person who is standing right in front of me.’ That’s a game changer in terms of what it does to your patient, how hard you work.”

DIA seeks patient participation to determine clinical endpoints, the desired outcomes of new drugs. Parikh explained that while researchers may focus on a new treatment’s ability to prevent disease-related death over the standard therapy, patients focus on quality of life. Parikh cited the case of clinical trial data for a drug treating Duchenne muscular dystrophy, which did not present a compelling case in terms of lengthening life spans, and therefore may not have been approved. However, at a DIA meeting, “a patient advocate made the case that things like being able to hold a spoon or being able to smile or being able to raise your hand were very valuable endpoints,” Parikh told Palmer. The drug was approved.

In the world of healthcare, as ordinary people whose daily lives are affected by the decisions made by experts are finally having a voice, will other association sectors take note? Surely students and their parents would like to have a say in how they are educated at education conferences, and the public deserves a voice in congresses concerning their safety. It can be argued that associations meeting to discuss challenges such as climate change or the effect of artificial intelligence and automation on the workforce should involve the input of the people on whom these changes will have the greatest impact.

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